tag:blogger.com,1999:blog-61671426843575022052024-02-07T03:35:30.931+00:00Things Are Never How They SeemMadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-6167142684357502205.post-83155323822601676922016-10-25T17:11:00.000+01:002016-10-25T17:11:02.568+01:00Dreams Really Can Come True!!<div style="margin-bottom: 0cm;">
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">So,
it's been a while since I blogged, sometimes there is just so much to
blog about, that you don't end up blogging at all! Not to
mention that there seems to be absolutely no time to sit and actually
type. Sometimes however, something happens, and I am just
compelled to write about it.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">So,
Rowan, as some will know, absolutely loves music. He loves
nothing more than to put his headphones on, turn the tunes up really
loud, and sing as loud as he can. He says it helps him with his
pain, and when he feels a bit sad. </span></span></span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">Rowan's
got quite an eclectic taste in music, ranging from Piano Guys, to
Queen, Coldplay to Christina Perri and everything and anything in
between, more recently adding in Taylor Swift. However, if you
look at Rowan's 'most played' list, there are just 2 bands on that
list. One being Imagine Dragons, the other, Sunset Sons. Who?
You may ask? (don't ask Rowan, he gets very cross if you don't know
who they are!). Yes, a band called Sunset Sons. </span></span></span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">We
first heard them about 18 months ago, when checking out the
supporting act for Imagine Dragons who we saw in Birmingham. They
were an instant hit with Rowan, and he absolutely loved seeing them
as the supporting act. Since then, his love for Rory, Pete,
Robin and Jed has just grown and grown exponentially. The
release of their first album (Very Rarely Say Die) cemented Rowan's
love for the band. In the height of any hospital admission, or rough
day, while feeling frustrated, upset, in pain, and exhausted, he plugs
himself in, and listens to September Song. 'hang on, it's not
over, we can find a little somewhere to be, hang on, it's not over,
just take a little moment to breathe'. Being only 7 years old
the lyrics for this song may, or may not, be meaningless to him, but
it's amazing to watch him try to distract himself this way.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">In
August of this year, ironically during a hospital admission again,
Rowan was listening to his favourite song, Remember. We were
waiting for doctors, and tests, and a plan, he was nil by mouth, and
he was in pain. As he has done a hundred times before, he
plugged his headphones in, and turn up Remember so loud, I could hear
it word for word, through the headphones. I snapped a quick
picture, and tweeted it to Sunset Sons, I thought they would like to
know how much their music helps Rowan, genuinely! To my utter
surprise Rory tweeted us back! A day or so later, Rory appeared
in Rowan's bed space in hospital, while we were waiting to go to
theatre for surgery. I won't divulge the conversations they had
that day, but I can say I think it was enlightening for everyone!
The nurses may have all been a bit weak at the knees (after
spending 24 hours being briefed Sunset Sons and every single song by
Rowan) but Rowan was the epitome of cool, calm and collected. The
one thing Rowan kept saying was that he only had to wait 7 years to
come to a gig. You see, all the gigs so far have been 14+
(except the festival ones) due to licensing and venue rules.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">A few
days later, another message pinged through twitter, 'How would the
big man like to come to a sound check?' I knew how much that would
mean to him, but I didn't want to get his hopes up, in case things
didn't quite work out for him. Turns out, it DID work out. The
long awaited sound check day was yesterday. We came to Helen
House for a few days respite, the plan was, we would go to the sound
check, come back, put Rowan to bed and then Denise and I would go to
the gig in the evening at the O2 Academy in Oxford, leaving Rowan
literally around the corner at Helen House. It was all set, and
planned to perfection, as has to be done with a child with complex
medical needs like Rowan!</span></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLbKqRgaz7Xic58OGZpsUQsOh0E0t2gzaDo8_uYrq8MSTata8zJiHB7lI3Tzw8F7SGwlNX8WdfDh7eMQjDAoCvIR2xtuIke-BUap1yNLH9N_7WBNIcUzQzDYOwwGhlrOgvhGK3wgZbrSQ/s1600/14825576_10154350963208113_1967835063_n.jpg" imageanchor="1" style="clear: left; font-family: "times new roman"; font-size: large; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLbKqRgaz7Xic58OGZpsUQsOh0E0t2gzaDo8_uYrq8MSTata8zJiHB7lI3Tzw8F7SGwlNX8WdfDh7eMQjDAoCvIR2xtuIke-BUap1yNLH9N_7WBNIcUzQzDYOwwGhlrOgvhGK3wgZbrSQ/s320/14825576_10154350963208113_1967835063_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sound check time!!</td></tr>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">All
yesterday morning he was counting down the hours, minutes, and
seconds to the sound check. We had Remember on repeat, ALL
MORNING. 345pm arrived, and off we went. Rowan was SO
excited, he had even picked a top he thought Rory would like! As
we approached the O2 Academy, we had a welcoming party! Up the
stairs we went, as the band were continuing their sound check, Rowan
announces 'it sounds really real'. We're not really sure what
he expected, but he was in awe. As we walked in the door, the
reality of the situation hit him, and he just didn't know what to
say, standing right in front of him, was the band he listened to
every single day. Priceless. Rory asked Rowan which song
he wanted (even though we know Rory already knew!!) Remember,
obviously! Rowan sat on the stool, bouncing his feet in time,
taking it all in.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">Once
the checks were all done, the band descended from the stage to say hi
to Rowan. Somehow Rowan ended up on the stage! Playing the
drums and keyboards with Rory. It's hard to explain how it
feels, as Rowan's mum, watching a guy that doesn't really know us, or
Rowan, or a whole lot about our 'back story' see Rowan for who he is.
Many, many, people shy away from Rowan, with his backpack, and
tubes everywhere, drainage bags etc. But not Rory! I
deliberately didn't want to give a whole sob story about Rowan, I
don't like it when people feel sorry for him, or pity him. Rowan
doesn't have it easy that's for sure, but that's just not how we see
things, and that's not how Rowan sees himself. </span></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCwSj9lm73XI6fPadki6wdDu-1RpVVwIHFctSslogC5OW5IueL1QFzqkpHFc-vey3w_Fr3Va223vfTf_flQYiisNtuDh6QARubIdKnf0wVXBXX5vQCN1SihxMIG2f3MfVCWQ5ae2S38vQ/s1600/14813587_10154350963283113_1679559348_n.jpg" imageanchor="1" style="clear: right; font-family: "times new roman"; font-size: large; margin-bottom: 1em; margin-left: auto; margin-right: auto; text-align: center;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCwSj9lm73XI6fPadki6wdDu-1RpVVwIHFctSslogC5OW5IueL1QFzqkpHFc-vey3w_Fr3Va223vfTf_flQYiisNtuDh6QARubIdKnf0wVXBXX5vQCN1SihxMIG2f3MfVCWQ5ae2S38vQ/s320/14813587_10154350963283113_1679559348_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My favourite picture of the afternoon! Drumstick up your nose Rory!</td></tr>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">As
Rowan was banging away on Jed's drums, and Rory was teaching Rowan
the beginning bars of Remember (by the way Rory if you see this, can
you let me know the notes, Rowan is trying to practice it, I can
'play' piano so can teach him it), under the watchful eye of Pete. </span></span></span><span style="font-family: "times new roman"; font-size: medium;"> Dave and I had a little chat. </span><span style="font-family: "times new roman"; font-size: medium;">Dave said something to me, that
no one has ever said before, and it is something that will stick with
me forever. 'What are they treating him for?'. Dave did
not ask me 'what's wrong with him' which is what I usually get asked,
and I hate it when people ask that, there is NOTHING wrong with
Rowan, his body may not work like yours or mine, but there is nothing
WRONG with him. So I gave a little more information, while
trying to watch Rowan. He was in his element, quiet, taking it
all in, cool as a cucumber. It was time to go, and as we walked
back to the hospice, Rowan was singing, and chatting, and he was just
amazed. He said it was the best day of his life, ever. His
dream literally had just come true!</span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">On
return to the hospice, Rowan was telling everyone, whether they were
busy or not, where he had just been, and who he had just met. At
about 1845, Denise and I were getting reading to head out to the gig,
when my emails pinged. Amongst it, was a Twitter notification,
I quickly checked it. Went and got Rowan as quickly as I
could, and got him to read it. 'We've sorted it so that rowan
can come to the gig toni-' Rowan stopped reading, ran around,
screaming, jumping up and down, he was SO excited, it was priceless.
I videoed it. Suddenly he was getting in the wheelchair,
barking orders at nurses for medicines, and jumpers, he was over the moon
to say the least, kicking his legs, and squealing!</span></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgckg4EfKqwwb6t5Oe-N8P9YAGCekreq6xOCgLSjN3B9j0MCvhWS0Bmu7r_Ufvk1UihYKFwyStwE8UV1zWtTFk5nWHtXaMI6CEVgBv-y2oI6nswYze2egHJ60ipP1bhUE_Cchb5_IIx1zM/s1600/14804878_10154350963508113_1489401704_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgckg4EfKqwwb6t5Oe-N8P9YAGCekreq6xOCgLSjN3B9j0MCvhWS0Bmu7r_Ufvk1UihYKFwyStwE8UV1zWtTFk5nWHtXaMI6CEVgBv-y2oI6nswYze2egHJ60ipP1bhUE_Cchb5_IIx1zM/s320/14804878_10154350963508113_1489401704_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for the gig to start!!</td></tr>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">Off
we went, where we found a lovely security guy from Showsec, who
handed us a pair of ear defenders that had already been waiting for
Rowan, and escorted us upstairs, across the room, to the foot of the
stairs to the stage. Harriet from the O2 Academy also appeared,
and got Rowan a chair so that he was comfortable, and introduced us
to another security guard, who stood with us the entire gig! It
was amazing! Rowan was exhausted, Sunset Sons didn't start
their set until 915, but after a power nap from Rowan, he was blown
away. The shout out to Rowan when Remember was played, was
something he will never ever forget, watching Pete play the bass TO
Rowan, was amazing. The high fives, and fist bumps as they
entered and left the stage, Rowan really was treated like a rock star
(we are working on the black Rory!). </span></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Thank you so so so much Dave!</td></tr>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">I
spent some of the gig watching Dave, watching Rowan. Rowan was
just a little boy, clapping along, singing every word, completely
immersed in the music he loves. Dave was watching, and smiling
at him, you did that! Dave, you made Rowan's dreams come true,
and for that we will be forever grateful! You may never truly
understand what that experience meant to me, as Rowan's Mum, it's not
something I can put into words. I honestly felt like you guys didn't
see his disability, his difficulties. Last night Rowan was in so
much pain, his muscles literally gave up holding him up, we had to
support him. But there he was, singing his heart out, enjoying
himself, something far bigger to concentrate on than his painful
legs, and back.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">When
the gig was over, we headed, escorted, down the back stairs, avoiding
all the tipsy crowd, where we were met by another Showsec security
guard, and Rowan's wheelchair, Dave took a selfie with Rowan, which
is on Twitter! We walked back to Helen House, and Rowan was
absolutely exhausted in every possible way, but buzzing!</span></span></span></div>
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<tr><td class="tr-caption" style="text-align: center;">Buddies</td></tr>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">This
morning he got up, and has played the album ALL morning. He even
sang responses to questions, in the tune of various sunset
songs.....it's amazing how he can turn 'I need, fluconazole, it's
already 8 o clock' to the tune of 'I win, you lose, it's only for us
two'. He went into the hospice's music room, and was practicing the
drums, and trying to remember the keyboard part Rory had taught him.
Rowan said to me this morning 'I don't really have any friends at
school, but it's ok now, because </span></span></span><span style="font-family: "times new roman"; font-size: medium;">Rory said I am his buddy, so now I
have a friend'. It's hard to explain sometimes, how lonely and
isolated Rowan can be. He doesn't get invited to birthday parties,
or play dates, he isn't included in many things children his age are
doing. People don't always understand Rowan's needs, and he has to
miss out, because the forethought wasn't there, or people are too
afraid to just ask. Yesterday, Rowan's needs were thought about,
nothing was too much trouble for Dave, Harriet, or the Showsec team.
Rowan was treated like a VVVIP!!</span></div>
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<span style="color: black;"><span style="font-family: "times new roman";"><span style="font-size: medium;">Dave,
thank you so much, words will never be enough. You made one little
boy realise that dreams really DO come true if you just be yourself.
Sunset Sons, you guys made Rowan feel important, and loved, and gave
him an experience he will never forget. Rory, you are absolutely
amazing with Rowan, don't ever change, and thanks for making Rowan
feel like he has a friend in this world. Harriet, I have no idea
what strings were pulled to make last night happen, but we are
eternally grateful for everything you did, I mean EVERYTHING! And to
Showsec, for ensuring Rowan was safe, and looked after, from the
minute we arrived, to the minute we left, and not making us feel like
an inconvenience!</span></span></span></div>
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<span style="font-family: "times new roman"; text-align: justify;"><b><u><span style="font-size: large;">Dreams really DO come true.</span></u></b></span></div>
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MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com4tag:blogger.com,1999:blog-6167142684357502205.post-3646188686879548052016-03-29T22:46:00.000+01:002016-03-29T22:46:01.250+01:00The verdict is in......undiagnosed.<div style="text-align: justify;">
It may come as a bit of a surprise for those who know me, that I didn't really accept that we were 'official' members of the undiagnosed club until 9 months ago. Rowan had lots of labels, which I won't bore you with again, and life over the last almost 7 years has been complicated, rough and down right terrifying at times. I was living in a kind of denial for most of it if I am honest. On the outside it would appear that I understood and I was fully on board with the whole 'no diagnosis' thing, and I was comfortable with it. And I was, logically. I could say it, but I didn't feel it. Deep down I still thought we could find out what was going on, and either give him a medication, or a trip to theatre, or the right diet or change of treatment plan and within a few months I would have a relatively typical little boy again, and that chapter of the story would have ended. Just like had happened with Ayden and Cameron when they were diagnosed with Coeliac Disease. I wasn't expecting a 'cure', that I accepted a long time ago, but I didn't expect this 'no diagnosis' thing to be an ongoing situation. I mean he has lots of 'symptoms' and he has lots of 'complexities' and he has had a ridiculous amount of tests, and we are under the world famous children's hospital along with many other specialists, and professionals. Logic says there is enough evidence, and enough professionals involved that SOMEONE would know what's going on, right? Wrong.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0rxPfD9KFGVQQV-oJPrSyXyy8Yr6lZhv3AM7uHNdf72mvJLEkX5aOQFrccerBeMnrHlsUG_u8kGyF-dmfPHJ8SK3CqpUdUHdy2gbe-CU1lGufD3Jv63HpzDjdvYa1-BVFmkJpIJnVbjw/s1600/12509005_1003313966401501_7979174427514872780_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0rxPfD9KFGVQQV-oJPrSyXyy8Yr6lZhv3AM7uHNdf72mvJLEkX5aOQFrccerBeMnrHlsUG_u8kGyF-dmfPHJ8SK3CqpUdUHdy2gbe-CU1lGufD3Jv63HpzDjdvYa1-BVFmkJpIJnVbjw/s320/12509005_1003313966401501_7979174427514872780_n.jpg" width="240" /></a></div>
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We're in this 'no diagnosis' limbo for the foreseeable, it's not just while we're waiting for test results, it's not just while we're waiting for a referral to a new doctor. There is no medication, or diet change, or surgery that will fix all the problems, and there is no 'eureka' moment imminent. There is no 'final piece' of a puzzle that will complete the picture, we have lots of pieces from lots of puzzles, and we're trying to fit them all together somehow. You know when you go to the doctor, with a lump.....and you go through the process of blood tests, and scans, and ultrasounds, and you're terrified the whole time, what is it, what could it be.....imagine that, every....single....day. That anxiety of what tomorrow could bring. What if? What if? What if?</div>
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With Rowan at the age of nearly 7, I think every day 'What if?' What if today is his last day? What if this opportunity never comes again? What if we never get a diagnosis? What if....this is it? Those 'What if's?' never go away. This 'undiagnosed' situation isn't temporary. Our journey with Rowan has a beginning and a middle.......the end is pending. It's hard work, it's frustrating, it's lonely, stressful and demoralising, it's depressing at times, and it's scary. But......it's not all bad. Rowan is Rowan, regardless of whether he has a diagnosis or not.</div>
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It has taken me a long time to come to terms with the fact that being undiagnosed isn't a temporary stage, it's not just that we haven't 'looked hard enough', it's not that we are waiting for results. We've done the tests, some were pretty horrific, and some, as you may know, went horribly wrong. The results are in, they have been calculated and verified, and the verdict is in. UNDIAGNOSED. It was an adjustment and a lot to get my head and heart around. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitIB-_cRu6j3wg4ZZAMicksh-WC3yuGjuB29c3DgZ73TW4SPnM-cMG_rpn5LhAUyZA1_b1iTNGa1L7tUwYxU4_6txI70baGEu2wfpEcpSSL2BkAabxGMFPZ9qJvKNw8CW40OX5aHJyjr8/s1600/SWAN+UK+logo.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitIB-_cRu6j3wg4ZZAMicksh-WC3yuGjuB29c3DgZ73TW4SPnM-cMG_rpn5LhAUyZA1_b1iTNGa1L7tUwYxU4_6txI70baGEu2wfpEcpSSL2BkAabxGMFPZ9qJvKNw8CW40OX5aHJyjr8/s320/SWAN+UK+logo.jpg" width="320" /></a></div>
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So, I have finally, officially, logically and emotionally accepted it, and have come out of the closet. We are HAPPY to be undiagnosed, and we are PROUD to be a part of a pretty amazing, unique, and diverse community that is SWAN UK, every single one of us different, yet every single one of us united. And from this acceptance, has come motivation. Never will we let an opportunity go astray and never will an opportunity to educate a person about being undiagnosed be missed. To you we may just be one undiagnosed family, but actually there are thousands of us. </div>
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Friday 29th April 2016 is Undiagnosed Children's Day, this is a day where 'we' (members of SWAN UK) raise awareness for our children's situations. To try and raise a little bit of understanding as to why being 'undiagnosed' is important to us, and some of the additional challenges we face. All families who experience disability face challenges, many of which are similar, and yet some of which are unique to our community. We also like to raise the profile of SWAN UK so that other families out there can find us, and we can all stick together through the good times and the bad. Did you know 75% of parents, who's child doesn't have a diagnosis says that they feel isolated? I am one of that 75%! Just by networking other families together, through social media or through local meet ups and coffee mornings, that figure should reduce. Why should we all care?? Because every year 6000 babies are born, and will have a disability that will be undiagnosed. In 2009, Rowan was one of those 6000. It happened to me, it could happen to you, or someone else you know! It matters because Rowan matters. It matters because I matter. The 6000 babies born every year matter.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmU6NYjfM3aV95paOVlRZ1LqwGC4oECcxWGOKZ8eT_0bcIQC34fdusHCXHHnyb0J1apCaQEiUa44vZ0aUtNfPv8ML5OkUxy21AeorwQ3ze1FOxt-9L7fugzcS1Eyflxqhf_Lhyphenhyphenf0GUj5Q/s1600/4183_98089983112_478883_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjmU6NYjfM3aV95paOVlRZ1LqwGC4oECcxWGOKZ8eT_0bcIQC34fdusHCXHHnyb0J1apCaQEiUa44vZ0aUtNfPv8ML5OkUxy21AeorwQ3ze1FOxt-9L7fugzcS1Eyflxqhf_Lhyphenhyphenf0GUj5Q/s320/4183_98089983112_478883_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rowan, 4 weeks old, before it all began</td></tr>
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MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com1tag:blogger.com,1999:blog-6167142684357502205.post-85153115324344324892016-02-09T10:30:00.000+00:002016-02-09T10:43:06.746+00:00Adulting.<div style="text-align: justify;">
Better late than never.</div>
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Isn't that how the saying goes? I have been itching to write this post for 2 weeks and I have had all the right intentions, however between the demanding children and their needs, and university work, and meetings, and appointments, plus trying to factor in sleep it just hasn't happened! Until today that is.</div>
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A couple of weeks ago, whilst Rowan was an inpatient at GOSH, I got the opportunity to go to the Rare Disease AGM. I had absolutely no idea what that was, but, Lauren (from SWAN UK) invited me to support another SWAN Mum, Lisa (<a href="https://definitelynotthewaltons.wordpress.com/">Click here to see Lisa's blog</a>), who was speaking. To be honest it's everything I hate. People, strangers, new environment, and a real lack of what exactly it was, however Lauren can be somewhat persuasive when she wants to be, and off I went, leaving Rowan at GOSH with the nurses. It was time to practise 'adulting', but do I know how to be an adult? I wasn't so sure!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5SNtFfTxAnt6LxzruHdYdDjI-NhUkgt0tOAsuBABsXbF_ysV8Q0j_0oRKnX65S7aMMbwyKy-7-b9kTua4oOPUEhbfuOvNSfsTLvuNfCb47IMVNMWpDZ8tJxSVp1pxnWj-9XoOUx4m5A0/s1600/SWAN+UK.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5SNtFfTxAnt6LxzruHdYdDjI-NhUkgt0tOAsuBABsXbF_ysV8Q0j_0oRKnX65S7aMMbwyKy-7-b9kTua4oOPUEhbfuOvNSfsTLvuNfCb47IMVNMWpDZ8tJxSVp1pxnWj-9XoOUx4m5A0/s400/SWAN+UK.jpg" /></a>We arrived at the venue, found where we needed to be, and got a coffee. There was a bit of 'hanging around'.....which I believe other adults may have called 'networking' but, you know, I am new to this game, and yet to learn the rules! The AGM then began, there was quite a lot of paper! Lots of lists of names of attendees, and I think the thing that struck me most, was all these names, and then 'who they were' written next to them, there were lots of people from lots of different organisations.....I was sat in a room full of professionals, me, and them........professional adults. Crap, I was still a beginner to this 'adulting' and here I had landed myself in a room of 'professional adults'. I felt like a fish out of water.</div>
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However, Alistair Kent, who is the Chair of Rare Disease UK, began to talk. Rare Disease UK is an initiative of Genetic Alliance UK, in a similar way that SWAN UK is also an initiative of Genetic Alliance UK. Rare Disease UK supports those people with a 'rare disease' and SWAN UK supports those who 'have no diagnosis'. There were technicalities around the AGM that went over my head, but the whole experience was mind blowing. As Alistair Kent began his speech, there was a realisation on my part, he GOT IT. Everything he said, was true. Everything we discuss, as parents, privately, within SWAN UK, came out of his mouth. I got goosebumps. There was this big realisation that, SWAN UK, is not just a little desk in the corner of the room somewhere, in the dark. SWAN UK is a part of something far, far bigger than I had ever considered, going right up to the government. Whilst living without a diagnosis does have some unique challenges, specific to a lack of diagnosis, there are also a number of similarities 'no diagnosis' shares with 'rare diseases' and this was echoed by Alistair Kent. A man I had never met, was talking about some of the struggles, and the complexities that we face. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5CFWwSW3ZB6MAZfsTo3wzuEqyxBThaALVPqpDskmdAaqJ7IgWbzH__ifaTyOfIQDOrtMEL8lucaiRDiiNNZDv8ysYNivvFO1bO8VsjlBpJf6DVumHqANIAK89WF0WLNEXrmuSY7E5SqE/s1600/Rare+Disease.png" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5CFWwSW3ZB6MAZfsTo3wzuEqyxBThaALVPqpDskmdAaqJ7IgWbzH__ifaTyOfIQDOrtMEL8lucaiRDiiNNZDv8ysYNivvFO1bO8VsjlBpJf6DVumHqANIAK89WF0WLNEXrmuSY7E5SqE/s320/Rare+Disease.png" width="320" /></a> </div>
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In that one singular speech, from a stranger, I suddenly felt validated, that someone cared, that someone was looking out for us, that someone was trying to make things better for us, that rather than just being 'us' over at SWAN UK we were just one part of a very big community, rallying for change, shouting loud at the right people to be heard. It was amazing. </div>
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There was a lot of technical information, lots of damning statistics, lots of comparatives from a previous AGM, case studies, a discussion about a new centre opening up at BCH, lots of very impressive adults, talking about very adult issues, and plans. And I just sat there in awe, inspired. I literally felt like the world just opened up, and I wanted to be a part of it, but how could I be a part of it? I was still only practicing at being an adult, and I don't like people, and I don't like new situations, and I don't like anything that would be required to get involved in anything.</div>
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However there was this overriding emotional response to the day, that I just wanted to DO something, I want to be a part of something that was bigger than just me and the kids at home. I wanted to be a part of the change in those statistics, and I wanted to become more experienced at being an adult. Throughout this complicated, stressful, frustrating, journey with living with a child without a diagnosis, the times I have felt most proud, are the times my knowledge has helped someone else. I'm not talking about 'solving' someone else's problems, but by fighting my way through the system, it means the next person doesn't have to fight so hard. That is what I want to be doing, trying to make future generation's lives that little bit easier. But how can I do that? How can I get involved in that?</div>
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Thanks to the Rare Disease AGM, and Alistair Kent's inspirational speech, I am tackling all those things I don't like, all those things I struggle with, head on. I am going to be a part of the change, whether I like it or not. I'm not saying anything else about this right now, but watch this space........</div>
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And a big thank you to Lauren, without your persuasion, I would never have been inspired. You may regret this in the near future, but thank you for letting me practise at being an adult, for a little while. Who knows where this may take me! </div>
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And if you want to find out more about Rare Disease UK, here's the link <a href="http://www.raredisease.org.uk/">Rare Disease UK</a></div>
MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com1tag:blogger.com,1999:blog-6167142684357502205.post-81834486301397340582015-10-20T21:12:00.000+01:002015-10-20T21:12:30.538+01:00Fundraising for a Quality of Life!<div style="text-align: justify;">
It's been a while since I have written a blog post but as many of you know I have not been doing nothing. Behind the scenes, and through Facebook, Denise and I have been working our socks off trying to get our fundraising for Rowan off the ground. It's been a rocky process, and I really didn't think it would be this difficult, but it is what it is, and I will not give up or be beaten!</div>
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So, a question I am often asked is 'what are you fundraising for?'. Now if you'd been with us at the beginning of the journey you would know that we were fundraising for the down payment for a Wheelchair Adapted Vehicle. Rowan was meant to be getting a power chair, and therefore we needed an adapted car to transport the power chair. More recently however, there was some difference of opinion amongst professionals and therefore, as it stands at the moment, Rowan will not be getting a power chair.</div>
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I was really hurt and upset at the time, and I had to take a time out. It took a few days, maybe more for me to get my head straight. I was worried that I had misled everyone who had already donated, that I had let everyone down. I was ready to give up fundraising and hand back all the prizes we had had donated. Give everyone back their money for tickets to the disco we had arranged, and call it quits. If i had done that though, it would also have meant the money we had in our just giving account (nearly £300 at the time) would have gone elsewhere, and I didn't want that to happen either.</div>
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The fact still remained however, that Rowan was in pain every single day. The fact still remained that as his Mum all I ever want to do is take that pain away, and I can't. A significant part of my day is spent distracting, soothing, making hot water bottles, rubbing, massaging, stretching muscles, strengthening muscles, encouraging pacing, running warm water over various body parts, and crying inside. It's horrible having a child who is in pain, and knowing there isn't much you can do about it, but you try anyway, just in case THIS time it makes it go away, maybe it's the 876th time you rub his back that's the charm. Some days are better than others, some days are a lot better than others, but whether it's a good day, or a shockingly awful day, the one thing we, as a family (and Denise), are determined to do, is give Rowan and his siblings the best quality of life we possibly can. His pain will not rule our lives, and it will not limit his life experiences, nor his quality of life as long as I breathing.</div>
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This determination not to be beaten was, ultimately, the thing that made me dry my tears, put my big girl pants back on, and work out what the next steps were (with lots of help from Denise). So, the underlying purpose of fundraising was to make sure Rowan had the quality of life he deserves, the quality of life he fights every day for. That has not changed, and will not change. What has changed however is the aim of fundraising. We have 2 immediate targets, that will enhance Rowan's quality of life, and a longer goal as well.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYdk5aJViRKpZvF6BGCDHXAT30GknC_7BH8_wmXbC3A5q35Ehe76pd__RoznsTeCwqefTqcLsMEgZd03mJ64X8OV_TcLLfcXvDWZxMdBmtO6oFZMZIWAttzdGc03Dk8qiCux6IsqCsZoI/s1600/71GA2SPPewL._SL1500_-620x597.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: justify;"><img border="0" height="308" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYdk5aJViRKpZvF6BGCDHXAT30GknC_7BH8_wmXbC3A5q35Ehe76pd__RoznsTeCwqefTqcLsMEgZd03mJ64X8OV_TcLLfcXvDWZxMdBmtO6oFZMZIWAttzdGc03Dk8qiCux6IsqCsZoI/s320/71GA2SPPewL._SL1500_-620x597.jpg" width="320" /></a></div>
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The first is to purchase a Nutribullet pro 900. Some people may know what that is, and some may not. In Rowan's words it is a 'fancy schmancy whizzer'. Rowan currently can't eat very much, both in variety and in quantity. In order for him to taste things it has to be a smooth consistency which will drain out of his gastrostomy (the tube in his tummy) into a drainage bag (I know it doesn't sound pleasant, but it's a part of our lives). This does cause him some pain, but he says it's pain he can manage and it's worth it. There becomes a point (after 2 years) that you just get bored with the same jelly, yoghurts, custard, ice lollies and soup. I had a hand blender, but it was inconsistent, and unreliable and basically has now given up (I used it to puree food for Katrina as a baby 12 years ago, so it did it's job!). The last few times we have visited the hospice, one of the things Rowan has looked forward to is mealtimes, they have one of these fancy schmancy whizzers and it means he can eat ANYTHING after it's been in the Nutribullet, because it's more powerful than other products of a similar nature, it's a fantastic piece of kit! Rowan is extremely excited about the prospect of eating things he has missed out on, flavours he has missed, curries, cheesy veg, spag bol, lasagne, all those things I cook everyday that smell so yummy. I have even said I will whizz a McDs burger and see what happens, we can experiment! These currently cost approximately £130, but will make such a huge difference to Rowan!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPCDi0sZN_txoQRqasWC-pizbMdD9H3zEneSRiJNjGeABTyLsVWIVHGfj-ARBUk66P_RKMpALtriR9o9lT2mZFp7zap8t476WYyW7zZ-H5zSN84m9-bngnbEVPxt9KCxAMr3vpU3E-KXI/s1600/carrot3_02.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPCDi0sZN_txoQRqasWC-pizbMdD9H3zEneSRiJNjGeABTyLsVWIVHGfj-ARBUk66P_RKMpALtriR9o9lT2mZFp7zap8t476WYyW7zZ-H5zSN84m9-bngnbEVPxt9KCxAMr3vpU3E-KXI/s200/carrot3_02.jpg" width="171" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Rowan much prefers it in blue though!</td></tr>
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The second item is a bit more boring. As many people who read my blog and have liked Rowan's facebook page will have seen, we like to take every opportunity and run with it, wherever it may take us. We travel all over! From Nanny and Grandad's in Sussex, to various hospitals, up to Louise in Tamworth for yummy cakes, to the Natural History Museum, West Midland's Safari Park, Paulton's Park, all over! And we have many, many more destinations to visit on our list! Obviously this means lots of travelling time in the car, and up until the last 9 months or so we have been just fine, however, more recently Rowan is experiencing more and more pain in his car seat. His back hurts, his legs hurt, and he gets pins and needles in his feet. He can't be in his car seat for more than about 45 minutes before the pain sets in, and even after we have stopped and got him out the car, stretched and done anything we can think of to make him more comfortable, after another 20 minutes he is back to being in pain, crying, complaining, screaming. We have tried everything from rear facing, to forward facing, crossing his legs, leaning them on the seat in front, a tens machine, nothing really works that well. Just to get to Great Ormond Street is about a 2 hour drive (on a good day) that's 2 stops each way, and lots of tears (Not just from Rowan usually!) If we are travelling 'to' a destination, it means before we even get there he is in pain, and sometimes that does impact on the experience although we try hard not to let it, although the journey home is often.....challenging. I have researched, a lot, and asked a lot of questions, and it would seem the way forwards is a new car seat. <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI_EHvSZvFY5yOhaWzgjD0YFYxYxrR1gbB6nsDwOzNpBqD3KQrYRLd7i3DVIvftGm2G0JFGEmQqXSyFSYXzwvEh-YBh92xYleS4n_LOzN1kEf1r5DnumtRvwkLWEH7nMIkxcM4tMkg11Y/s1600/1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhI_EHvSZvFY5yOhaWzgjD0YFYxYxrR1gbB6nsDwOzNpBqD3KQrYRLd7i3DVIvftGm2G0JFGEmQqXSyFSYXzwvEh-YBh92xYleS4n_LOzN1kEf1r5DnumtRvwkLWEH7nMIkxcM4tMkg11Y/s320/1.jpg" width="320" /></a>Only, as soon as you add the infamous title of 'special needs' it automatically gives the right to suddenly multiply the price by 10! Rowan needs a car seat that will support his back, keep him sitting in the best position, prevent him from slipping down and sitting on the bottom of his back, support his feet, and just make sure everything is lined up exactly how it's meant to be. This then, should mean that his pain is reduced, and he can rest properly in the car, and be comfortable while every part of him that needs supporting is supported in the right way. There are 2 car seats that I have come across that will give him what he needs, both, I have been told are approximately £2,500+ Is it worth it? Absolutely. You just can't put a price on things like this!<br />
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You may see Rowan walking around and can't work out why he needs these things, because he 'looks' just fine, but looks can be very deceiving. Rowan's muscles just aren't as strong as they should be, he has to do exercises every single day, and despite these he still gets completely and utterly exhausted, to the point where he physically can't walk up the stairs and his legs give out from beneath him, he gets pain from doing the simplest of things, that we all take for granted. Unfortunately Rowan's body just doesn't do what he needs it to do, no matter how much he wants it to, or how hard he works for it.</div>
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In order for Rowan to live the life he deserves, the life he fights so hard for, he needs a bit of an extra helping hand. I would love to be able to afford these things on my own, and not have to ask for help, but it just isn't going to happen. I know in the current climate everyone is strapped for cash, it's not easy for any of us, but every penny (or cent, or euro etc) gets us that little bit closer to our target. Every penny someone donates, is making a positive impact on Rowan's quality of life.</div>
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Rowan has his own just giving page if anyone would like to make a donation, I just want to point out as there has been some confusion, the money you donate does go directly to Rowan. Tree of Hope are a charity that helps families like ours to raise money, they hold the money for us, and we apply to them to release the funds, it gives those who donate a reassurance that their donation is going on what we say it is, it also gives us the advantage of a text to donate number, and a charity number as well, but it does go into a fund specifically for Rowan. Here is the link <a href="https://www.justgiving.com/rowansroadster/">Rowan's Reality</a></div>
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However, if, like many people you want to get fully involved in the process, Denise and I have worked our socks off organising a Halloween Disco this Sunday (25th October) in Kingsthorpe, Northampton. There are about 20 tickets left, and the information is below, if you'd like to come, let us know! There is a mobile number, and an email address below, or message us through Rowan's facebook page and we will get you sorted out. Denise and I have a couple more ideas for fundraising events once we have gotten over this one (and some time to recover) and we are grateful for every single one of you who are behind Rowan, and believe in him like I do, even if you can't donate, even if you can't come to our events, please share his fundraising page, like his facebook page (<a href="https://www.facebook.com/RowansReality?fref=ts">Rowan's Facebook Page</a>), and see for yourselves the difference you are making.</div>
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MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-48843467387111191332015-07-15T09:35:00.000+01:002015-07-15T09:35:45.321+01:00Single Parenting and Hospital Admissions.<div style="margin-bottom: 0cm;">
<span style="text-align: justify;">I realised a few days ago, that no one
really understands the logistics of what happens with Katrina,
Cameron and Ayden when Rowan needs to go to hospital, whether that's
the local hospital, or GOSH. You would assume they'd go to family or
friends, I mean that's what happens with most siblings isn't it? My
situation is a little different however.</span></div>
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Due to circumstances I don't have
family who are able to help out, either through work commitments or
logistics, and actually the vast majority of family would not offer
anyway, due to them just not being part of our lives. The 'other'
side of the children's family either don't know my children, have
never met them, or are not allowed contact with them, which has been
decided by a court. This only leaves friends. I don't have many
friends, in fact, when it comes to needing someone to help out with
the kids the list is pretty much non existent.</div>
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So what happens with the kids?
Depending on which hospital Rowan happens to be in, and what days of
the week it is. If it's certain days of the week, I have one friend
who helps out, whether it's sitting with Rowan, or looking after the
other kids, or running to the shops, or whatever will be helpful. If
it's the other days of the week, I am alone. It's hard. Very hard. </div>
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If he is in the local hospital, my routine looks a little bit like
this:</div>
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6am Get up get the kids ready for
school, including putting dinner in the slow cooker, hoovering,
dealing with the dogs, tidying up, putting a load of washing on,
putting the dishwasher on.</div>
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815am Take the kids to school</div>
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830am Go to visit Rowan, trying to get
there for 9am and wait for ward round</div>
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9am-3pm deal with doctors/nurses/Rowan,
getting him up and dressed and washed, and fed, and entertained,
medicines done, out for ward leave, IV to do, checking his
temperature, cuddling him, comforting him, popping to the shop to top
up supplies, dealing with blood tests and other tests, as well as a
constant influx of calls, texts, and emails about everything, and yet
nothing all at the same time!</div>
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3pm leave the hospital to go pick the
kids up from school</div>
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430pm arrive back at the hospital after
picking all the children up, nipping home to collect
ipods/tablets/toys/dvds and anything else Rowan has requested.</div>
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430pm-6pm entertaining all the kids in
a very small space, getting homework done with them, and reading,
games, watching TV, more meds, more doctors and nurses to deal with,
emptying drainage bags, getting Rowan's Pjs on, teeth brushed,
sorting out what needs to go home, and what needs to stay, tidying up
his cubicle.</div>
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6pm-730pm I.V.s and TPN connection to
happen, getting Rowan into bed, and settled for the night, leave him
crying because he wants to come home.</div>
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730pm head home with the older 3 kids,
now grumpy and tired!!</div>
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8pm- Arrive home dish up dinner, to
find I forgot to buy potatoes/chips/rice/cheese etc. Hunt in the
cupboard to find something to substitute! While getting the kids to
feed the dogs, tidy their rooms up, find their stuff for tomorrow.</div>
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830pm Kids eat dinner, put their Pjs
on, and go to bed, then I eat (or not, which is more likely).</div>
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9pm Spend time playing with the dogs,
topping up their water bowls, fold the washing out the tumble dryer,
put the wet washing in the dryer, put dirty washing in the washing
machine. Unload and then reload the dishwasher, clear up after
dinner, sort out whatever Rowan sent home or requested for the next
day. Catch up on emails and messages on the answerphone, write a few
emails, open the post.</div>
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1030pm Call the hospital to see how
Rowan is.</div>
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11pm Go to bed, but now I can't sleep.</div>
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12am, the hospital rings, Rowan's TPN
pump won't stop beeping and I have to talk them through step by step
how to shut it up and get it running again after they have done his
I.V.s</div>
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1230am, try and sleep.</div>
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It's absolute chaos as you can see,
trying to run a house and feed the kids, and keep them all at the
things they need to be at. This is a normal day, on a Wednesday or a
Thursday, it's even more complicated as it's Guides/Beavers/Cubs.
But it needs to be done. The dogs don't get walked, I don't get to
go for a run, I don't get to clean the bathroom/toilet/mop/dust, I
don't get to go food shopping. It's lonely, and isolating, stressful
and exhausting! The few times I have asked people to help me out, I
have either been told no, or people are busy, that they find it hard
to see Rowan poorly, or something else. I understand people have
lives to lead, and sometimes I get really upset that no one will give
me a hand. I may appear that I have it under control, but I am often
falling apart. I often go all day without having eaten anything,
because I just can't get away. When Rowan is really poorly I don't
even get to the parents room to make a coffee as he just wants to be
with me all the time. Sometimes I physically can't eat, the
emotional drain of it all, and the worry of him being poorly, he
never has to stay for something 'simple' as I can do so much of his
care myself, so when he is in hospital, it's serious, and having to
leave my 6 year old in hospital all on his own every single night,
hurts in ways I can't explain. Would you leave your 6 year old alone
in hospital overnight, I mean it's not like a sleepover is it? He's
there because he is very poorly, and the time your child needs you is
when they are poorly and I just can't be there with him, because of
the circumstances. How would that make you feel? What would you do?</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnz3j0H2u5JJL1FKXw8IIffIket4jOXLRp2iucO5H6OnxLhL0qPhqe72cvqYbYkjyaKDn1ZF5GajsWugXR1XtNccQ4A-z4Gp69ga44cVAGgdm_0FVD4huBm2xIsP1bWA6c_9Ybus9UzW8/s1600/article-2599396-169104AC000005DC-883_634x463.jpg" imageanchor="1" style="clear: left; display: inline !important; float: left; margin-bottom: 1em; margin-right: 1em; text-align: center;"><img border="0" height="233" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnz3j0H2u5JJL1FKXw8IIffIket4jOXLRp2iucO5H6OnxLhL0qPhqe72cvqYbYkjyaKDn1ZF5GajsWugXR1XtNccQ4A-z4Gp69ga44cVAGgdm_0FVD4huBm2xIsP1bWA6c_9Ybus9UzW8/s320/article-2599396-169104AC000005DC-883_634x463.jpg" width="320" /></a>If Rowan is in GOSH the whole thing is
completely different. Due to having no one around to help out, after
several years of constant fighting and arguing and failed placements
and complete nightmares, and me having to sort childcare out mid
admission because whoever has the kids can't/won't have them any
more, the social worker at GOSH said enough was enough and she
intervened after I literally had a breakdown mid-admission with the
stress of it all. My older children now go into foster care while I
am at GOSH. I usually have to fight for it for each admission, and
it has to go to panel, and there is a whole process to go through and
usually requires a lot of input from other professionals to justify
the hospital admission. I didn't want this for them, but I have no
choice. Usually they get to meet the foster carers before they go
into care, see where they will be staying, get to see who else lives
in the house, any pets, choose their bed (for the boys), ask any
questions they have, I can talk to the carers about the best way to
manage the kids, and feed them etc. Then when they are in foster
care they can ring/call/facetime (the brilliance of apple products
and wifi!) me as much or as little as they want. The placement is
stable, it's not going to fall through, and while it's usually a
little more complicated than that, arranging time to see them, and
spend time with them during the placement etc. I'm not going to find
myself with nowhere for the children to sleep or stay. So for this
particular admission we had weekend leave, so I picked all my kids
up from school on Friday, Saturday we nipped to the shop, and did a
bbq and did marshmallows and smores, and ice creams, the kids had a
water fight, and watched a film (or went to bed early in Rowan's
case) and had them until Sunday evening, when I returned them to
their foster carers and return to GOSH ready for the second week.</div>
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When I say my kids are going into
foster care, it's always assumed it's a bad thing, or a negative
thing, or that something has happened, or that I have done something
wrong. It's not like that, and I wish they would call it something
else rather than foster care, respite care, or something. It's
pretty rare to be in the situation I am in, and therefore lots of the
protocols we have to go through are exactly the same as when they
remove children from parents and that's hard to stomach sometimes.
Then it's a case of making sure the forms are filled out in a way
that reflects the situation, as they just don't work otherwise. For
example, I usually I get letters a few weeks after I have got home
again with dates and times for medicals, which is standard practice
when a child is put into care, and I have to ring up and cancel them,
because my kids are back at home, and they don't need medicals
anyway. There needs to be more awareness and different processes to
go through in this situation, however unusual or rare it is, it still
happens!! It's hard enough having to leave your children with
strangers, even though you know they have been through rigorous
processes, without leaving them with a big 'LOOKED AFTER CHILDREN'
form, that makes you feel inadequate as a parent.</div>
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</div>
<div style="margin-bottom: 0cm; text-align: justify;">
So as I type, Katrina is with one
foster carer, and the boys are with another, and I am at GOSH with
Rowan. It works, in as much as the kids all get a break from each
other, and they are in a stable environment continuing with their
routine and going to school etc. It's hard for them emotionally to
be split up, and not at home, and not with the dogs, nor in their own
beds. I would love to say it gets easier each time, but it doesn't.
This is one of those things that happens when there is a practically
non-existent support network. We get through it, but it's not one of
my favourite things that's for sure, and it usually ends up with me
making myself ill! That and the kids are all over the place
emotionally, one has meltdowns, one cries all the time, and the other
gets super hyperactive!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim-D2jFeRaqvsN82S9CQSLvDcNq2cScGrQVZ5lywYTVVSDhW_Hr6V98DAc4huXxEutEjP8wDYTugwQ_md5tJH8g7UeQdxYTtGtxleVKkE5YDNyWLCCva4GR2v4mjvu34NIfi2A8yOPM3E/s1600/images.jpeg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="149" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim-D2jFeRaqvsN82S9CQSLvDcNq2cScGrQVZ5lywYTVVSDhW_Hr6V98DAc4huXxEutEjP8wDYTugwQ_md5tJH8g7UeQdxYTtGtxleVKkE5YDNyWLCCva4GR2v4mjvu34NIfi2A8yOPM3E/s200/images.jpeg" width="200" /></a>I guess the point of this post was to
give you all a little insight into how absolutely chaotic life can be
with a child who needs frequent medical attention and hospital stays.
Especially as a single parent. Especially with a minimal support
network. My advice to you would be, if you know someone in a similar
situation, don't assume they have it under control. Just because it
happens regularly, does not mean it's easy, or organised. Offer to
help, whether it's school runs, bringing dinner, bit of childcare,
visiting the hospital, bringing lunch, magazines or coffee, offering
to walk the dog, or have the kids for a sleepover. I can tell you
now, someone in the situation I am in, would be more grateful than
you can ever imagine. That person would also often be the first one
to offer you help if you were in need of it. Friendship is a two way
street, sometimes it's hard for people to ask for help, and there are
only so many times they are willing to ask and be told no before they
start believing no one cares. Don't just say you care, when there is
a crisis and help is needed, show that you care.</div>
MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com1tag:blogger.com,1999:blog-6167142684357502205.post-92114966055284722972015-07-03T14:26:00.000+01:002015-07-03T14:26:33.075+01:00The Plan is......No Plan<div style="text-align: justify;">
So as you all know the clinical error occurred (check out <a href="http://www.thingsareneverhowtheyseem.blogspot.co.uk/2014/08/clinical-errors.html">Clinical Error</a>). Since then we have really been trying to adjust, dealing with a few line infections, and waiting for more tests so we could move forwards.</div>
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In January we went into GOSH for 3 weeks for various testing. Some were routine, and some were meant to be diagnostic. I won't go into the tests themselves, but the main one was a nuclear transit study, he was only the 3rd to have that one, It was pretty traumatic, he ended up on ketamine for pain relief, but we got the test done. This test involved a number of scans, every day for 5 days, watching a very special dye go through the system (it's not the same as other dye type tests although I don't know why). After a couple of days the dye wasn't moving, I didn't think anything of it to be honest, and carried on, by day 4 it still hadn't moved, so I asked the guy doing the scan, and he said it did seem to be stuck. Uh oh. We were meant to be going home for the weekend on the Friday, after the scan, however the scan revealed all the radioactive dye was still inside him. Stuck. We had to have a weekend of laxatives to get all the dye out, thankfully it worked (there was a little bit left but they let go) and we moved on to the next tests. I was really hopeful this would lead us to a diagnosis and a plan, it was an abnormality, something we probably would have seen in manometries if they had been successful!</div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO384VGJJKGfUcsajBBU7FR55hyqh6Gs0s0ft2ozJFPoiUDwMd8jk2QT0wJthBrhNtSnUenYYKFQHCJisJzt1VomCdhZdmbS1mNUywQCGmizEaFXe1Ue1JYmmA3HV9KoL8qS48Rv125W8/s1600/10419569_902382163161349_4890758384448773432_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO384VGJJKGfUcsajBBU7FR55hyqh6Gs0s0ft2ozJFPoiUDwMd8jk2QT0wJthBrhNtSnUenYYKFQHCJisJzt1VomCdhZdmbS1mNUywQCGmizEaFXe1Ue1JYmmA3HV9KoL8qS48Rv125W8/s320/10419569_902382163161349_4890758384448773432_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just a picture of Rowan,<br />because he's worth it!</td></tr>
</tbody></table>
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I had a few chats with a few doctors before we came home, and it seemed like an ileostomy was going to be the way forwards. (an ileostomy is a stoma, that brings his ileum to the skin, and then a bag is attached on the outside, and basically his 'waste' goes into the bag, rather than him doing a number 2 on the toilet) I spoke with his consultants, I tried to get my head around it, I googled, I asked friends who had ileostomies, I spoke to nurses. I complied a list of questions, I asked about the process, the positives, the plan afterwards. It looked as though once the ileostomy was in and healed, we would go back to gosh to try feeding him again, and then increase the feeds and reduce the TPN and we could go back to pre-clinical error state. For the first time in a really long time, something inside me had hope. Hope that he would be able to go swimming, be off TPN during the day, be able to eat whatever he wants, whenever he wants, gain weight be strong again. I could see a little bit of the future, and if you'd asked me 3 years ago, if I was happy with the way things were with Rowan, I would have said no, but now, I would do anything to go back to that.</div>
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So, at the end of April, I drove down to GOSH for a meeting with the motility team and his usual TPN team. The purpose was to discuss the plan (aka ileostomy). I phoned the CNS the day before and clarified that's what we were there to talk about and she said yes, and that the problem they found in January, no one had said would 'fix itself' and therefore everyone was on the understanding this was the way forwards. I know it sounds silly, to phone the day before and ask about the content of the appointment, as surely that's what the appointment is for, but I don't manage things very well when unexpected things happen, no one does really, but I really really don't manage it well. So I drove down to GOSH, finding that part of me that I needed to be Rowan's advocate and ask questions, and have the confidence to air my opinions if they differed.</div>
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First off, the first thing we do is height and weight. He had lost weight, quite a lot of weight in fact. Bugger. So the appointment started off with his usual team, tweaking his calories, adjusting the rates and volumes, adding in more of the things his bloods said were lacking, had a look at his medications, nothing remarkable, just a typical nutritional appointment for us. Then it was time for the motility consultant to talk. He started explaining to me what they found in January, that the left side of his colon doesn't seem to work. (I already knew that). That's why we have so many issues with constipation (I knew this too). So then his usual consultant said 'so the plan will be an ileostomy' to which the motility consultant said 'no'.</div>
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No. No? No. No? No. Huh? The room was silent, the atmosphere could be cut with a knife. Blindsided, shit. His consultant turned to the motility consultant and just said 'why?' I could tell she was as shocked as I was, if not more so! He explained that the finding, while significant, was insignificant. While it's an issue, and previously would explain some of his issues (pre clinical error) it's currently not causing an issue as such. I think I must have had that 'what the heck' face on, and I just couldn't talk. So he tried explaining it to me 'if we get Rowan feeding, IF, then this will become a problem and he may then need an ileostomy, however, if we put an ileostomy in now, it won't make any difference to his current feeding situation, therefore it's unethical to put him through surgery, when there is no benefit'. I understood. But I was still confused. So basically, we needed to get him to feed. Why can't he feed? Why can't he eat? Why can't he have milk feeds into his jejunum (small bowel)? Why?</div>
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'The clinical error probably did something, to something, we just don't know what either of those somethings are'. Oh. Shock again. Ok so more tests right? More tests that we run to find out what those somethings are? No. They had a bit of a conversation amongst themselves, trying to work out the plan, if there had been any tests that they could do that we haven't already done, that weren't potentially too risky considering the clinical error, and the answer was no. Everything they have done shows the problems we have when he feeds (along with videos I have sent them), however they just don't know why, what, or how. Completely undiagnosed once again, a complete mystery.</div>
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The plan was NO PLAN. The plan was 'go home and have fun'. Accept that Rowan is on TPN long term, that at the moment we can't feed him, this is it for us for the foreseeable.</div>
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I kind of went into shock for a couple of days, literally. I couldn't talk about it, couldn't process, and certainly couldn't accept it. TPN was meant to be short term, temporary, we were nearly off of it, now we're 100% reliant on it. This was not what was supposed to happen! I went through a whole grieving process I think over the next few weeks. I had to accept a lot of things, that I hadn't been willing to accept before. Adjust to this being our life, and not just a phase. Then I had to start telling the professionals. This no longer had an 'end date' that I needed to get to, before everything would be 'normal' again, and they needed to be aware of that, and look at long term, rather than 'in the interim period'. This then meant a lot more meetings, a previous consideration of reducing Rowan's respite hours was thrown out the window (sharpishly) and he was re-awarded the same as he already had (phew). School plans have been considered, and we're trying to get him on a different timetable to access more of the curriculum, as he isn't coping for more than a couple of hours. Physio and OT and I had discussions around ways to help him be independent, while being dependent. My life was once again turned upside down.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaNvupuYQL9eKzvbEph_wNYizGcTB-y5ecxzt-AHTpZHwoWIA5EFHRyl9MONthVEu70rEUbL17tiK49rZhNNZ2qNMNHNiw4dFOQvVYemBX7W6KBxCpTYMAYzQK6YJgU4WCJmujDRziUE4/s1600/1280px-Royal_Flush_w.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaNvupuYQL9eKzvbEph_wNYizGcTB-y5ecxzt-AHTpZHwoWIA5EFHRyl9MONthVEu70rEUbL17tiK49rZhNNZ2qNMNHNiw4dFOQvVYemBX7W6KBxCpTYMAYzQK6YJgU4WCJmujDRziUE4/s320/1280px-Royal_Flush_w.jpg" width="320" /></a></div>
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But it's worth it, it may not be the life I wanted, it may not be the life he deserves, it may not be the life he would have had, or should have had, but it is his life. And no matter which cards he has been dealt, he will end up with a royal flush, and a big confident smile. His cards will mean he is a winner every time. I will make sure of it!</div>
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MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com2tag:blogger.com,1999:blog-6167142684357502205.post-4481622960666624812015-04-23T00:10:00.000+01:002015-04-23T00:58:23.893+01:00How do we feel about being Undiagnosed?<div style="text-align: justify;">
Friday 24th April 2015 is Undiagnosed Children's Day. A day where we (those of us with children without a diagnosis) try to spread as much <strike>cheer</strike> awareness as possible. By celebrating our amazing children, writing blog posts around it, composing exposés about how life really is for us, the battles we truly face, the let downs from services, and revealing our feelings about how we live life with a catalogue of unknowns, all down to the fact we can not fill in the 'diagnosis' box, or tick a pre-assigned box on a form.</div>
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I could do the same, but I won't. I have more than my fair share of negative stories to tell, the number of let downs, the number of battles and arguments with services to fight for what Rowan deserves. The number of days I have spent terrified for his health, the amount of hospital visits and tests we have done, the number of inpatient stays, and blood tests. The things Rowan regularly goes through are well documented. I could write a thousands posts on just these, and some of the stories may shock you, and leave you horrified. They may even upset you.</div>
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Instead, this post will be about the other side of life without a diagnosis. Some of you may not understand what 'other' side I am talking about, so read on, after a cute picture of what my 'without a diagnosis' child looks like.</div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: 1em; margin-right: 1em; text-align: center;"><tbody>
<tr><td style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQFq8cES8kJMw5oBlCZ34oWr4GpQW9Cg2cKPoC96WayNwFQB6S5s0w2rs2OK5mnTA8o8O28nuyOmVy8nDl03LJKRi1mraA91ID-31N6Hww29pGoBSaGCp7HzZYnpIFiv_6DWaKVhnXob0/s1600/11146226_872617956137770_8232907425772205491_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQFq8cES8kJMw5oBlCZ34oWr4GpQW9Cg2cKPoC96WayNwFQB6S5s0w2rs2OK5mnTA8o8O28nuyOmVy8nDl03LJKRi1mraA91ID-31N6Hww29pGoBSaGCp7HzZYnpIFiv_6DWaKVhnXob0/s1600/11146226_872617956137770_8232907425772205491_n.jpg" height="320" width="180" /></a> </td></tr>
<tr><td class="tr-caption" style="text-align: center;"> A recent hospital stay, doing music <br />
therapy with Thomas's fund as distraction.</td></tr>
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So, this 'other side' of having a child without a diagnosis, from my perspective. I don't know what the future holds for Rowan, and I can't speculate, no one can. The doctors have no new ideas, and while we occasionally get a little bit of information that tells us something new, it doesn't explain the whole picture or lead us any closer to that elusive label. Having spent a number of years looking for that label, over and over, desperate to grasp hold of something, to explain it, to negate my assumptions I did something wrong, I failed, I could have done something different, I missed the whole point of becoming a Mummy.</div>
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When Rowan was 18 months old, he was admitted to Great Ormond Street for his long stay. I could tell you exactly what his weight had been for the last 12 weeks, and on which dates, I could tell you blood test results, I could tell you exact dates he had met certain milestones, and I could recite every single medical person's phone number, email address, postal address, and full name and job title, the last time I had seen them, how long the visit lasted, and exactly what was discussed. I thought that that was my job. The doctors looked to me for those answers, those details, I had to have them. If I didn't have them, I wasn't doing my job properly. I soon discovered I was very, very wrong.</div>
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Someone, not long after we had been admitted, asked me what Rowan liked to play with. He was a very poorly little boy, and it suddenly dawned on me, that I had absolutely no idea who this little person in front of me really was. Don't get me wrong, I loved him with everything I had, I just had no idea what he liked to play with, what his favourite colour was, what he liked to watch on TV, what kind of music he liked, he was 18 months old, the age they really, really start to build into a little person, and I'd been missing it. My little boy could be gone, and I never would have gotten to know him. That day, my life, our lives, and mine, Rowan's, and all the other children's relationships changed, for the better I believe.</div>
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I stopped asking what blood results were, I stopped examining, weighing and measuring bodily fluids, and getting worked up about his weight, or lack of. We were in a hospital, the nurses and doctors were there to deal with all that. I took this opportunity to become his Mummy, and his friend, finally. I went into the hospital toy room, and had absolutely no idea what to choose for him to play with, he had hundreds of toys at home, which ones did he actually play with? I didn't know. It took me a few days, but I worked it out, he likes the little tykes car, anything that played music and flashed, the noisier the better, he hated messy play, or getting dirty, I was started to learn who he was, and he was a cheeky monkey!! We started to learn makaton together, and we were finally communicating, together. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIVPo3EkKdx-cDAgJSObN9p8WDMzVBPkXu9PFQAkA28H26tmld_nFq0aoCjkDvK4HN84cNJGOEviZe2QbfjdVhgMqN5C_iAWmZoHZOhsrJdhDIkOw7kR6ufLafc7Pj6p6qt0enPDsTXfU/s1600/th.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: justify;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIVPo3EkKdx-cDAgJSObN9p8WDMzVBPkXu9PFQAkA28H26tmld_nFq0aoCjkDvK4HN84cNJGOEviZe2QbfjdVhgMqN5C_iAWmZoHZOhsrJdhDIkOw7kR6ufLafc7Pj6p6qt0enPDsTXfU/s1600/th.jpg" height="200" width="200" /></a><br />
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I came home from that hospital stay with a whole lot of medical care to do, high risk medical care, that is extremely time consuming. But, all I wanted to do was go home, and repaint Rowan's room, mickey mouse, because that was his favourite. Red was his favourite colour, and he had an eclectic taste in music. I wanted to get him home and introduce him properly to his siblings, and let him be himself. That hospital stay was the most enlightening stay for me, it changed everything. It changed my perspective of everything. </div>
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This has been my second chance and this time I am doing it differently. It's not easy for doctors to hear a parent tell them no when they want to run a particular test, and mean it, especially when they are so used to you always agreeing with them. I made choices for Rowan, not just for the reason of finding a diagnosis. I made balanced decisions, if a test was not going to change the treatment plan we were already actioning, whatever the outcome, I would now say no. It made me a better parent, a better advocate, a more confident person.</div>
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So this other side of not having a diagnosis, has taught me the value of the other things in life. It's taught me the only thing that matters in life, is the quality of it, not the quantity. I don't know what's around that corner, with, or without a diagnosis, no one knows, but without a diagnosis you really have to learn quickly to appreciate the fragility of life. I tell people we can't tick a box, that means that we're filling the rest of the page, and we're really going to fill it. Quality of life decisions can be hard to make, but I take one day at a time, one step at a time. Rowan has a life, and he's going to live it. He is going to experience as much as physically, humanly possible, <strike>whether he likes it or not.</strike> And that's what we do.</div>
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So, recently Rowan has started horse riding, started, and become invested in Beavers. He's had music therapy, we've been camping, we've been to a theme park, we've been to a festival, we've been to the beach, we've walked countless country parks, gone on easter egg hunts, been to the cinema, chalked on the patio, had a bbq, made cakes and biscuits, been to meet Paul Hollywood and Mary Berry, we've been geocaching, we've been to a farm, and a safari park, we've been swimming......and this list is still growing.<br />
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I just have to double check with myself sometimes, that I haven't spent so long fight battles, that eventually I often win, but not always, that I have sacrificed Rowan's quality of life in the meantime. It's a real juggling and balancing act, it really is like a circus in my house. There is a very fine line, and everyone's line is in a different place, but the medical side of Rowan, is not Rowan. It's just a small part of him. And even if we got a diagnosis tomorrow, it would not change who he is, who he has become, and who he will be. He is the same, very very nearly 6 year old, with, or without a diagnosis.</div>
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Being undiagnosed can be isolating, terrifying, lonely and leave you feeling helpless and hopeless. You're expected to fight battles that you just don't have the time and energy for. You have to fight for absolutely everything your child deserves, equipment, respite, schooling, care, therapies, appointments, medications, you name it, without a box to tick, you have to fight for it even harder.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkIRaZl796RAA8M5HHwHq-LUTD3Dfw0M2_1oLPxR7You14ZQvJWoQPddKCgeHJsyXuOBVYCqU0GS11hwgrlk43Afat5SIJJO_nkbGeHoqoHbyE0azoyQt70ghvPzroVdjRPdgdvZ0fdtk/s1600/th+(2).jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em; text-align: justify;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkIRaZl796RAA8M5HHwHq-LUTD3Dfw0M2_1oLPxR7You14ZQvJWoQPddKCgeHJsyXuOBVYCqU0GS11hwgrlk43Afat5SIJJO_nkbGeHoqoHbyE0azoyQt70ghvPzroVdjRPdgdvZ0fdtk/s1600/th+(2).jpg" /></a></div>
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We now have a place to go to vent all these issues, get support, and see how other people have done things. Yes, every now and again there is a disagreement, but that's bound to happen when there are over 900 people in the group, but it often gets sorted out in the end! But we also share the celebrations, we share how we accomplish things, we share how we adapt activities to make them inclusive. This place is SWAN UK. It's our little exclusive, yet inclusive club, no diagnosis allowed (unless you are a graduate Swan). It's our little sanctuary, where we share things we wouldn't share with other people, from silly stories about the most embarrassing thing that's ever happened to you, to heart wrenching emotions when things don't go so well, sharing pregnancies (not mine), to sharing losses. But we all have <strike>one</strike> two things in common.</div>
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<li><b>We have a child without a diagnosis</b></li>
<li><b>We want our children to have the best quality of life they can</b></li>
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For us, as a family of 5, the focus is on experiences, living life to it's full potential, disability or no disability. I know most of Rowan's medical stuff, it just sticks now, naturally, but I'm not afraid to tell the doctor I don't know when he first smiled anymore, and make them look it up. I don't care when he first smiled, my only concern right now, is that he keeps on smiling. Unless he is in time out!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhruuvFEfUUwzo93vRh9rQGEAqUOiMffidJZf_sNeKAdiA96_BoKtYaOA8RxqutwoukrA9NcUQjsIgC8UlaekPapqQOQnEU0KMvCSU-h7YGAafjfg9fbrrzXS0D6LylF11ebegK5_MIPcQ/s1600/11159964_874501502616082_481883453833265692_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em; text-align: justify;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhruuvFEfUUwzo93vRh9rQGEAqUOiMffidJZf_sNeKAdiA96_BoKtYaOA8RxqutwoukrA9NcUQjsIgC8UlaekPapqQOQnEU0KMvCSU-h7YGAafjfg9fbrrzXS0D6LylF11ebegK5_MIPcQ/s1600/11159964_874501502616082_481883453833265692_n.jpg" height="200" width="200" /></a><br />
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So, the other side of having no diagnosis, learning to appreciate the little things, and life live one day at a time, and experience everything you can, no matter how big, or small. Battles will always be there to fight, pick them wisely, and don't miss out on finding out exactly who it is you're fighting for. I have maintained my promise to myself, Rowan's favourite colour is red, his favourite programme on TV is Jamie Oliver's 15 minute meals, he likes watching stampy<strike>bloody</strike>longnose on youtube, he still isn't a great fan of messy play, but does love to bake (and eat) brownies. He absolutely loves minions, but his favourite film to watch over and over at the moment is Rio/Rio 2, that's until Annie is out on DVD! He loves Imagine Dragons, as well as Taylor Swift, however his favourite song is Red Balloon by Charlie XCX. When he grows up, he wants to be an ice cream man, with Ayden driving the van, and when it's not hot anymore, he wants to be a taxi driver. I know who Rowan is, I know who all my kids are (apart from the preteen, she morphs every minute into someone new!) and we're going to fully live our lives, together.</div>
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We're off to get sorted for our next new experience, a certain someone's minion birthday party. Please click the links below to read other blog posts to support Undiagnosed Children's Day</div>
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<!-- start LinkyTools script --><script src="http://www.linkytools.com/thumbnail_linky_include.aspx?id=254936" type="text/javascript"></script><!-- end LinkyTools script -->MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-90950763803547781422015-03-21T07:49:00.002+00:002015-03-21T08:35:20.168+00:00What do you see?When you look at this picture of Rowan, what do you see?<br />
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A little boy with ice skates on, a smile on his face, with a penguin called Rob? That's what I see too. In this quick photo that took less than a second to take, this what you see. You see what I want you to see. You see the good part of this particular experience. Would anyone really want to see the reality of the before and after of this situation? Before this he was quiet, unsure, a little scared, it took quite a lot of convincing to get him out of the wheelchair and onto the ice. He was only out of the wheelchair for about 5 minutes. But it was the best 5 minutes of the entire experience. He kept saying 'I'm doing it Mummy, I'm really doing it'. He shocked himself! He really didn't think he could do it. He was proud of himself and so he should be! This is what taking the photo is about, remembering the good part. When I got Rowan and his siblings home from ice skating, the 'aftermath' kicked in. The pain kicked in, his back, his legs, his tummy, everything hurt, he was exhausted, there was lots of screaming, lots of crying, followed by lots of leg rubbing, back rubbing, a warm bath, loud music, everything we try first, ending up with Tramadol, so he could relax enough to sleep, and once he woke up, he was in a better position to function throughout the day.</div>
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When you look at this picture of Rowan, what do you see?</div>
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A little boy, making his Beaver promise, proud of himself once again. Smile on his face, happy. He is now officially a Beaver! (The youngest section of scouts if you have no idea what this is). Maybe you see the TPN in his backpack, maybe you see the drainage bag dangling by his feet. Maybe this disgusts you, maybe it makes you curious, maybe you don't even see them? Maybe you see the cuffs rolled up of his jumper that's just that little too big for him. This is a milestone in Rowan's life. A huge one. It's also something that he does with other boys (girls can attend too, but there are no girls in their group at the moment, just to clarify), boys his own age (actually technically he's the youngest right now, but not for long), interacting with them, a little bit of normalcy. He is finally beginning to feel comfortable within that group. You don't necessarily see his needs. You can't see the TENS machine on his back because it's been playing up all week, and this takes the edge off a little bit. You don't see the risks, you don't see the fact he has to have a specially trained adult with him at all times, you don't see the 2.5 hour nap he had before this, just so that he wasn't too exhausted to attend. You certainly can't see the aftermath. Within 10 minutes of being home from this fantastic milestone, Rowan transformed. He was angry, very angry, screaming, shouting, I believe there was some swearing, there was certainly some kicking and punching (sorry Denise!), he was inconsolable, and irrational. He didn't know what he wanted, nothing was good enough, he wanted everything but nothing. As a parent, or any adult around him to be honest, it's hard to know what to do. He is in pain, a LOT of pain. Does that make it acceptable for him to behave like that? Do you let him get away with it as 'he's in a lot of pain'? Or do you discipline him, as it's unacceptable behaviour? Sometimes all you can do is walk away. Eventually I managed to calm him down (and apologise to Denise). We talked (well he sobbed), put his pyjamas on, turned up his TENS machine, got him a hot water bottle, a drink, and Denise read him a few stories to calm him down. It took 2 adults to get him into bed, and calm enough to rest. This was the aftermath of going to Beavers for an hour. Many people ask if it's worth it. Is the pain worth it? Is that hour of Beavers really worth the aftermath? Absolutely. If I asked Rowan if he still wanted to go to Beavers, even after that, he says yes. In Rowan's life, I have to make decisions that don't always make sense. Beavers offers Rowan something that he can't get anywhere else. I have to balance Rowan's needs, his educational needs, his emotional needs, his social needs, as well as his physical needs. His physical needs are just a part of him.</div>
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How about this picture, what do you see?</div>
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<tr><td class="tr-caption" style="text-align: center;">Rowan, and Jock.</td></tr>
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Rowan riding a pony. The last couple of weeks Rowan has started riding with the RDA (<a href="http://www.rda.org.uk/">Riding for the Disabled Association</a> fantastic organisation). Anyway, he's on a pony, he looks so tiny! Smile on his face, yet again. Maybe you see the backpack. This for Rowan, is physio, it's 30 minutes of riding a pony, up and down, playing little games, collecting toys to throw in a bucket, or flowers to give to Mummy (who's eyes are bloodshot and puffy, and leaking, struggling to breathe, Mummy is very allergic to horses!!). Riding builds Rowan's core strength, he is really weak at the moment, but in time his posture will improve and strengthen, the way they need to sit on top of the horse pushes them to sit upright, and this will strengthen his core muscles. So, why is he horseriding when Mummy is so ridiculously allergic? (Honestly it's bad!) Because why wouldn't I? If Rowan was allergic, that's different, but he isn't, I am. He needs this. Rowan hasn't been having regular physio for quite a long time now, as he has gotten so weak, they haven't known what to do with him. He started hydrotherapy, but that had to be stopped for safety reasons. No one has been around to advise me, or help us. I am the one who has spent hours researching, looking at what activities build up which muscles. No one recommended horse riding, but as soon as I said he was doing it, the professionals were very enthusiastic about it. Something else no one has ever suggested would be beneficial for Rowan, from any kind of perspective is a bike. He can't ride a 'normal' bike, he doesn't have the strength, or the balance, and having accessories (drainage bag, TPN) means that it's not safe. Why is there no professional helping me with these things?</div>
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So why didn't any other professional suggest a bike? Something else I had to do by myself. Because professionals don't seem to be able to see Rowan as a little boy, they don't see what I see, they don't see what everyone else sees, they see their speciality, not a child. Rowan is now the proud owner of a bike. It's a special bike, it's therapeutic, it's complicated as to how it's different to a normal bike, but basically he has to pedal more to make it move but by pedaling more, the effort needed is less. Again, however it's normalcy. Every other little boy his age has a bike, his brothers have a bike. He now has a bike and he is very proud of it. But once again, I was the one who had to look at the physio benefits, any potential issues, research what kinds of bikes were out there, and then try and find the right one, get quotes, and then apply to charities. (Thank you <a href="http://www.theboparancharitabletrust.com/">Boparan Charitable Trust</a>).</div>
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When I look at Rowan, I see a little boy, with a fantastic smile, a good sense of humour, an ability to manage the unmanageable, determination and a thirst for life. He also happens to have some very specific and unusual physical health needs. Rowan just wants to be like every other 5 (very nearly 6) year old. he wants to go to school, he wants to have friends, he wants to ride a bike, he wants to go to beavers, he wants to play in the park, he wants to go on holiday to the beach, he wants to be a minion, he wants to go to parties and have friends over to play, and most importantly he wants to go and meet a minion (once we overcome the fear of 'people in costumes'). Rowan is a person, not a medical statistic, not an anomaly, not a hospital number, not an interesting case. A child, an amazing child infact. </div>
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When professionals look at Rowan, they see a system. If they are a gastroenterologist, they see a gut, in Rowan's case, a broken gut, stomach distention, gut dysmotility, gastric output, blood results, weight loss/gain. If they are a physiotherapist, they see weak muscles, poor posture, fatigue. If they are an endocrinologist, they see a small hypothalamus, hypothyroidism, a lack of height, and blood sugar issues. If they are the pain team, they see pain, chronic pain.</div>
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I can see those in Rowan, but I also see a little boy who deserves a quality of life. He deserves to do these things that other little boys do. And we just about manage them, by the skin of our teeth. We do them, at a cost. There is a price for Rowan to pay for being a little boy, and he'll pay it, over and over because he won't let his pain rule his life, he just needs a little hand with it.</div>
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Recently some decisions have been made, without my involvement, input or opinion, around Rowan's medical care. When I have been informed of the new plan (after attending many appointments miles away from home, a plan was formed, a month later they had a 'professionals meeting' took place, and the whole plan was changed, the whole plan), I became very upset. What I want for Rowan, and what Rowan deserves, often becomes blurred. Rowan's quality of life often gets forgotten by doctors/therapists. They have their goal in mind, and forget that their 'system' is inside a little boy. I argued the plan, I tried to get my point across, my opinion, for the first time in a really long time was worthless. The fact that I am the one that has to put this plan into place, against my instincts, is cruel and unfair, they are not the ones having to input the plan are they? They aren't the ones dealing with the fall out of their plan, Rowan is, I am. And there is more to my life than Rowan's medical care, more that it will affect. There is more to Rowan's life, than his medical care, life that will be affected.</div>
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When you look at a picture, at a child, at a parent, at a situation, just remember there is more to the story, There is always more to the story. Don't judge their entire life on a snapshot. Don't assume decisions you make are the right decisions for other people. Involve people in decisions, however small they are. </div>
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What you see, is not always what you get, you see what you want to see, or what I want you to see. Don't just see, look. Don't just hear, listen.</div>
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Unless it's this picture, this picture is exactly what it is. If you want to see more this, come and like Rowan's page on facebook, <a href="https://www.facebook.com/RowansReality?ref=ts&fref=ts">Rowan's Reality</a>, please.</div>
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MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-77161918858540405932014-09-03T15:45:00.002+01:002014-09-03T15:45:30.746+01:00Best Holiday Experince So Far!<div style="text-align: justify;">
I have been meaning to write this blog post for a while, however, I had to make sure I had booked my own tickets, and disability pitch before I wrote this and there is a rush on tickets, meaning I couldn't get my own!</div>
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This year, I took my children on their second ever holiday. Last year we went to Devon, and this year we went to Dorset. We actually went an event known as Camp Bestival. For those who don't know, this is the 'family' version of 'Bestival' which is held on the Isle of Wight. Camp Bestival is actually held in Dorset, in the grounds of Lulworth Castle.</div>
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Last August, as a spur of the moment thing, I booked tickets, I paid the up front deposit, and started to pay the weekly payment plan. Camp Bestival is, as I said, a family festival. Therefore requires camping. A tent. My initial thought was 'uh oh what have I done'. The second issue was that in order to go, I needed to be able to drive....s**t.....I hadn't even started lessons yet. The third issue was to throw in taking Rowan, with his needs now drastically different to last year's holiday. What the heck had I just done. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT72fjcvRoO6VjZpBcjNcneFhpvxTREuHjX3Z9Bv9pyph6exbu3vylnnP8x5HY3i0P4-lW9WJifzJveWzKZwrA_x9wPwur1s8wwZlf4-YrZOD9h24miYXlHvfVmeRad7UzCgmwM04Oqqc/s1600/10364186_10152260514203113_3560172711816833563_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiT72fjcvRoO6VjZpBcjNcneFhpvxTREuHjX3Z9Bv9pyph6exbu3vylnnP8x5HY3i0P4-lW9WJifzJveWzKZwrA_x9wPwur1s8wwZlf4-YrZOD9h24miYXlHvfVmeRad7UzCgmwM04Oqqc/s1600/10364186_10152260514203113_3560172711816833563_n.jpg" height="320" width="320" /></a>But that was only an initial reaction. Once I had gotten over that, we formulated a plan. First step, driving lessons. Now, for those of you who read my previous post, will know that in September we had a clinical error that turned our lives upside down, and this, therefore, meant that I couldn't take driving lessons for a long time. I started to learn to drive towards the end of January. With several hospital stays with Rowan, and the school holidays, I managed to go from a 'non driver', to pass my theory test first time, to passing my driving test on the 19th May. That solved one problem!</div>
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Now the camping problem. We didn't even own a tent, nevermind having never been camping. I had never put up a tent. I had absolutely no idea what I was doing, but with the help of some friends, we got a tent, and sleeping bags, roll mats, air beds, and that was pretty much it. We booked the local campsite, which is literally a 5 minute drive from my house, for our first run. We decided to go (my friend Denise and I) and put up this tent while the big kids were still at school, we would do all TPN at home for now, and see how we went. It seemed to work. It took us 45 minutes to put the tent up, not bad! And it really wasn't as difficult as I thought. The weekend went well and the children LOVED it. Obviously the first night they were very over excited, but the second night they fell asleep, and they really loved it. We had rain, and the tent stayed up. We had thunder and lightening too, and it really was ok!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxduiUJU-1i7oObCJMKyHDWyVFDtc3-aXt1Phb1ZDZ8Wud4QNl62usu1UOyh-RrE97xknjPPk5aOZtZTaKnAy7Mw60KYF5jvJgUqYtg6paNpMrF3ciGg5mqcK24u66Ed8n59LQ0mZ41A0/s1600/603672_10152404363613113_6935008215109234653_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxduiUJU-1i7oObCJMKyHDWyVFDtc3-aXt1Phb1ZDZ8Wud4QNl62usu1UOyh-RrE97xknjPPk5aOZtZTaKnAy7Mw60KYF5jvJgUqYtg6paNpMrF3ciGg5mqcK24u66Ed8n59LQ0mZ41A0/s1600/603672_10152404363613113_6935008215109234653_n.jpg" height="320" width="240" /></a>Because the first weekend was a success, I, once again spontaneously booked a weekend in Kings Lynn Camping. This time our shopping list had grown, a gas stove (for coffee!! and porridge for breakfast) a carpet for the tent to try and keep it a bit warmer and keep the dirt more contained, a camping table and chairs for the children to eat at (after a few spillages), coffee mugs, metal cutlery, a light for at night time. So, the second time we went, to Kings Lynn, we had a few more items, and it was even more of a success. It took us 76 minutes total to put the tent up, and unpack everything, no messing about, and that was WITH the children around. On the Saturday we spent the day on the beach. The first time I have ever taken my children to the beach (the time last year doesn't count as the weather was horrible). We went to Old Hunstanton beach, there was no 'tourist' stuff. There was no arcade, no pier, no donkey rides, nothing. Just sand....and sea. I was slightly concerned how this would go, as there is nothing to 'entertain' my children. But.....with buckets and spades, a load of sand, and some sea, shells and stones, we spent several hours on the beach, and the children LOVED it, they said it was the best holiday EVER. My children are so easily pleased! They built the first ever sandcastles, we buried Katrina in the sand, Ayden jumped over waves in the sea, and Rowan got over his fear of sand, sort of (but still will not go in the 'dirty sea water, it's got STUFF in it'.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8i4ds6q3-hcPodTZD-8Q4Fe8kdGJPNZJGxnUDkKmoCg2kDNMt8lLigT2mubSGd6M325HF8oml4irXNQ4RkVgKTvLYjRXq4EuPSldZUE55IE1j2WrXyXjLhMIpO3Q7_npB7X1usGxuMWo/s1600/10523761_10152404004863113_7539290836952825771_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg8i4ds6q3-hcPodTZD-8Q4Fe8kdGJPNZJGxnUDkKmoCg2kDNMt8lLigT2mubSGd6M325HF8oml4irXNQ4RkVgKTvLYjRXq4EuPSldZUE55IE1j2WrXyXjLhMIpO3Q7_npB7X1usGxuMWo/s1600/10523761_10152404004863113_7539290836952825771_n.jpg" height="240" width="320" /></a>So then, just before the children broke up from school, the preparations began. Only, Rowan had to throw a spanner in the works, as usual. On the last day of school Rowan landed himself in hospital, very unwell, with a line infection. He had not had a line infection for a couple of years, but, with something going practically into his heart 24 hours a day, and having IV paracetamol 4 times a day for a year, that risk escalated, and it happened. He was really poorly and for the first time in a year I had been reminded once again at the fragility of life for Rowan. With thanks to a friend, once again, I didn't miss Katrina's leavers assembly although it was close! She was leaving primary school, and the whole thing was VERY emotional! Anyway, Rowan was unresponsive all day, and I was very worried about him, he was very hot, and he was hallucinating, he kept calling me Katrina, he was delirious, he was convinced he had climbed to the top of the IV pole, and slid down it, but it was ok as he held onto the TV.......At 730pm the nurses changed over shift. We had a nurse who Rowan knows, and remembers, all of a sudden he wakes up, and he is FINE. He asked me if he missed snack. But he wasn't all that bothered that he had missed it (he started to show signs of being unwell just after 7am, and was in hospital by 815am). He asked the nurse if she could make him a cup of tea when Mummy went home, and then play his ipad for a bit before he went to sleep again. And this is exactly what he did. The next morning I went to the hospital and he was absolutely fine. We were discharged, and spent the next couple of days sorting out IV antibiotics, but we came out, with twice a day antibiotics at 12pm and 12am, for the next 10 days. We could still go on holiday. Phew.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBJ-yEZQstib0lfJ267lpW_R8rBTUh6YMJ43K0PZ6rr84nRpBI764t7kDyyg8nHzylfKXhU5HGA98o4kbo9mG64ETM0TwfaUBuXBP7_ME0pMbO2qkErLJRIXUydzlHHJXZYZCixyJskTg/s1600/10407610_10152432488683113_2225561845424792494_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBJ-yEZQstib0lfJ267lpW_R8rBTUh6YMJ43K0PZ6rr84nRpBI764t7kDyyg8nHzylfKXhU5HGA98o4kbo9mG64ETM0TwfaUBuXBP7_ME0pMbO2qkErLJRIXUydzlHHJXZYZCixyJskTg/s1600/10407610_10152432488683113_2225561845424792494_n.jpg" height="320" width="240" /></a>Once we had been discharged, the plan was on to start organising and packing everything ready for our holiday. The children were excited, as well as anxious, as was I. The practise runs had gone well, but Rowan was 'well' (for him anyway) those times, this time the risk was that he went downhill again very quickly, as could happen with a line infection. However it was a risk I was willing to take. We were in disability camping, and I had everything crossed that he would be ok. If not, we would just have to go to the nearest hospital and deal with it from there. We drove to Southampton the night before, and stayed in a hotel. My children have never stayed in a hotel before and they were so excited, as well as confused at how the whole concept works. Especially around breakfast! Just after breakfast (which apparently had fruit for pudding according to Ayden) we left and drove to Lulworth Castle. It took a couple of hours, but it was ok.</div>
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Once we arrived we pitched the tent. It was hard with lots of anxious children around, lots of questions, and being tired ourselves, but we got there in the end, after dealing with a meltdown. We went and got all checked in, wristbands obtained, and off we went to explore, and find something to eat. I have never seen so many gluten free options! I was so happy! (Apart from the pizza that was repeatedly contaminated on one evening). There was however, a big big issue with Rowan's TPN fridge. They had issues delivering it (with TPN), they wouldn't let the driver on site as he had no pass. Then when he finally managed to deliver it, the medical tent (after it had been signed for) decided there was no room for it, and we had to find an alternative. So, thanks to Alice, who did an amazing job, managed to obtain an electric hook up cable, and get some very nice medics to bring the fridge from the medical tent, down to disabled camping, I can tell you now, that was a long, heavy, hot, walk! So we had the fridge in our tent for the week. Once again the kids were overly excited and didn't fall asleep until about 11pm. But we were on holiday!</div>
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<tr><td class="tr-caption" style="text-align: center;">Cameron meets Michaela Strachen!</td></tr>
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The rest of the week was filled with fun, IVs, more fun, sleep, more fun, sunburn, more fun. There were live bands, comedy acts, fantastic food. The kids had an absolutely fantastic time. The atmosphere was amazing. Cameron got to meet Michaela Strachen. Katrina went to watch Sophie Ellis Bexter. James played. Ayden and Cameron were glued to the jousting. Rowan absolutely loved Mr B the Gentleman Rhymer, I have never seen him so happy! It was the best holiday we have had so far, by far.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ23FBpS6ALoQegpPqYeLRqiGbiytLhkJCKuD_9p1sxdIBUOy_o8UDsNl1y-YnUb3zcOU9PuzlzznSu8Q9_eDO9xj9M2dFZTGe4vhMuGQERalGw9I3CSEv3YePTV_GnvSbb3mTKYAL46w/s1600/10551000_10152432489798113_93876454376718590_n.jpg" imageanchor="1" style="clear: right; display: inline !important; float: right; margin-bottom: 1em; margin-left: 1em; text-align: center;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZ23FBpS6ALoQegpPqYeLRqiGbiytLhkJCKuD_9p1sxdIBUOy_o8UDsNl1y-YnUb3zcOU9PuzlzznSu8Q9_eDO9xj9M2dFZTGe4vhMuGQERalGw9I3CSEv3YePTV_GnvSbb3mTKYAL46w/s1600/10551000_10152432489798113_93876454376718590_n.jpg" height="320" width="240" /></a>From a disability point of view, it was great. It was in a field, which sometimes caused issues with the wheelchair, but Rowan's front castors are quite small, however, it wasn't impossible! Being in disabled camping meant we were close to toilets, and showers, and water, and we had electric hook up, and there were less people, it was more organised (we saw the chaos in the 'normal' camping!!!!). No one really paid attention to the disabled toilets being for disabled people, which was frustrating, apart from, by the main stage, the 'disability viewing area' was manned at all times, and was ONLY for people with the disabled access wristbands. We sat there a few times, chilled out, Rowan napped. I felt relaxed. No one cared that I was doing IVs in the middle of a field. No one stared at 'the kid in the wheelchair' or with his drainage bag on view. Nothing was too much hassle for the staff there. He was just Rowan! Ayden could run around and be himself, and I didn't have to keep telling him to calm down, or be quiet. The children slept better, I am sure thanks to all the fresh air (or methane from the toilets, especially the compost toilets!)</div>
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We all came home, very very tired, it took Denise and I a LONG time to recover, but we are already planning for next year, and we have already booked the tickets, and are paying the weekly payment plan. It was an experience I definitely want to repeat, and the children are already looking forward to. It wasn't the cheapest holiday on earth, but it was definitely money well spent! Obviously eveything inside is more expensive, but they can do that! Next year we will do a BBQ one night, and remember to take our snacks with us (not leaving them in the tent!). We will also look at getting our own electric hook up, so we can have the fridge in our tent from the get go. We will also be looking at getting our own trolley, to pimp up, and so Rowan can rest better next year. Also looking at getting another tent for Katrina to stay in, to give her her own space, next to ours.</div>
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I am thoroughly looking forward to next year already. I am also looking forward to taking our tent and paraphernalia on some more camping trips! We are however, fair weather campers, but, 3 years ago I would never have dreamed about taking my children camping. But, it really does work, fresh air, space to run around, no having to be quiet, everyone can just be themselves. Just always remember 'there are no secrets in the tent'!</div>
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MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com6tag:blogger.com,1999:blog-6167142684357502205.post-85096801846080705282014-08-25T09:37:00.001+01:002014-08-25T09:37:34.579+01:00Clinical Errors.<div style="text-align: justify;">
One of the main reasons I haven't blogged in the last year, is that, at the end of September last year, Rowan underwent a procedure at Great Ormond Street Hospital, and there was a clinical error. A clinical incident. Whatever you want to call it. Lots of people have asked me exactly what happened, and it's taken until now to talk about it, from my perspective.</div>
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Now, I know this test is run quite a lot on complex gastro patients, and what happened to Rowan has NEVER happened before, so I don't want to scare the crap out of anyone who is then told their child requires this test. A year on, they believe part of Rowan's undiagnosed genetic condition is part of the cause for what happened, but, at the same time, it was not all of it, and I didn't know about it until a few months ago, neither did the doctors. I do not change my opinion of Great Ormond Street Hospital either. It's a fantastic hospital that have saved the lives of 3 of my children. If it wasn't for them, I wouldn't have the 3 amazing young boys I have today! We are all humans. Accidents happen. Mistakes happen. It's a fact of life. This accident has had a huge impact on Rowan, and still does. But it was still an accident.</div>
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September 2013 Rowan and I checked into hospital for a 2 night, 3 day stay. He would miss a few days of school, and be back ready to go on the Monday. The plan was to go to Interventional Radiology and insert a probe down his nose, through his stomach and just out the other side. This would then be hooked up to a big computer for several hours, and it would record what the muscles and signals in his gut were doing. Or that is what I understood. This test is fairly routine amongst complex gastro patients like Rowan. It's called an Antroduodenal Manometry (ADM). They tried in the May before to put the probe in, and it wouldn't go. So they needed to try again to try and understand exactly what Rowan's gut is doing. This was the reason for the admission. We had had a few tests to try and work out why the probe wouldn't go in the first time, and everything came back 'normal' so they decide it was just bad luck and they would try again.</div>
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On the Thursday, Rowan went down to IR (Interventional Radiology). I don't count Rowan's anaesthetics, it's not a statistic I necessarily want to be that aware of, but let's just say in his 5 years, it's a lot. So he went for his special sleep watching Peppa Pig on the anaesthetists iphone. It's never easy to let them go when they sleep, and it never gets easier, but we all have our own little coping mechanisms. I always have the same little routine. I go back to the ward and grab a shower (no matter what time of day it is!). I then treat myself to a 'posh' coffee (as in not hospital coffee) and toast. I eat them, in my own time, while reading a book or something. I'll update my facebook status, check my emails, play those crappy facebook games on my phone. Those kinds of things. After 3 hours, I knew they hadn't got the probe in. The nurse let us know it was time to go and get him, and I went down with one of the ward nurses and she told me we'd be going back to our ward. I knew the probe wasn't in for definite at this point, as if the probe is in you go to a different ward for the day. So off we went to IR, to collect him.</div>
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He was a bit quiet, and usually the first thing he asks me is what's for lunch/dinner/snack etc. While he's still half asleep. He didn't ask at all. I just assumed he was a bit older now and he'd started to understand you have to wait a bit. But he didn't ask. For several hours, he just laid in his bed and watched TV. Usually after 15-20 minutes of coming round from an anaesthetic the nurses are chasing Rowan around the ward to do his observations (temperature, heart rate, blood pressure etc). I started to worry a little bit, he hadn't eaten or drunk or even asked! The nurse and I agreed maybe they had been a bit over zealous and he was sore, so we gave him ibuprofen. Well......I gave him that, with a flush (water to clear the medicine out of his tube and into him) and he screamed. Very strange. But he calmed down quick enough so we just assumed he was very sore.</div>
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He spent the next few hours just napping, by this time he had asked me to get into the bed with him, and have a cuddle (again, this is unusual he HATES me in his bed!). But I went with it, still thinking he was just feeling a bit sore and a bit sorry for himself. At about 530pm (so 5 1/2 hours after coming back from IR) I asked to see the consultant. The registrar had been in a few times and I just wasn't happy with the response I was getting from him. He talked to me about trying again with the probe endoscopically the following day and I informed him that I would not be signing the consent as Rowan was clearly not right at the moment. At no point did he take me seriously that there was something not quite right with Rowan. However, the nurses, who know Rowan extremely well, were not prepared to accept the blase response.</div>
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So, in the consultant came. I explained that he was not right, and I didn't understand why. So the consultant suggested that maybe he was just exhausted as he had only had half of his calories that day as he hadn't eaten, or has his milk feed or anything. That made logical sense to me, so just before 6pm, the nurses and i got him some marmite on rice cakes, and cereal, and jelly, just what he had asked for (after coaxing). He sat up to eat.......I have NEVER heard my child make such an ear piercing noise. It is a sound that haunts me to this day. The nurses and the doctor on the ward RAN into the cubicle. They told me not to feed him, slowly lay him down and make sure he laid down. I had no idea what was going on. He would not stop screaming.</div>
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The next 6 hours was a bit of a blur. He constantly screamed until he was so exhausted he was sleeping in 5-10 minute bursts. Doctors came in to review him, but kept scratching their heads. They ordered an x-ray. At this point I didn't know what for, all I could concentrate on was trying to console and inconsolable 4 year old. Nothing I did helped him. The nurses were able to give him IV paracetamol but it just didn't touch the pain. He kept screaming that his tummy hurts. He was begging me to help him. The x-ray came (after arguing that he could not go to the x-ray department. He had the x-ray, but it was then decided he needed to be sat up for an x-ray. Bearing in mind we were told not to sit him up, so I refused, as the doctor was very adamant. So instead, they asked me to lay him on his side for 15 minutes, and then they would come back and re-x-ray him. He didn't want to lay on his side. I pinned him (literally) on his side for 15 minutes. Counting down each minute at a time. The nurses were absolutely fantastic. Constantly checking I was ok, trying to get him some more pain relief, trying to get hold of doctors. There was no response. It was just the nurses and I, and we were both completely powerless, with a child that was clearly in some intense pain. To give you an idea, Rowan has an incredibly high pain threshold. When he had laproscopic surgery, he had NO background morphine, and only had 4 pushes of morphine the entire time and was sitting up unaided within 48 hours of surgery. The pain team said he must have a high tolerance. So, at this time, the way he was behaving, I knew it was the worst pain he'd ever experienced.</div>
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I had gone into some kind of 'survival' mode. If I'd really thought about what I was doing, pinning my son on his side, while he screamed in agony, I would have fallen apart, instead, all I could focus on was finding what the hell was going on, so we knew how to help him. To do that, we needed the x-ray. Finally that time came, and the x-ray was done. The radiographer told me it would take about an hour to get the report. So I went back to cuddling him, and trying to calm him down, unsuccessfully. The verbal report was in, it looked ok. More confusion, still a child in pain with no idea why. </div>
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The hours past, the pain team came and went, there was a lot of confusion over what was allowed and what wasn't, and who said what to whom. Consultants came, night doctors came, surgeons, registrars, fellows, everyone. In and out, lots of scratching of heads. Then it was time for shift change, all the doctors changed over, all the nurses changed over. The two nurses that were on that night, were not taking any of it. They rang, and rang, and rang, and rang. All of a sudden, just before midnight, there was a surge of people in and out of the cubicle. By this time Rowan was sleeping in 5 minute intervals. Literally. He was hooked up to all kinds of monitors, that constantly bonged, his blood pressure was sky high, his heart rate through the roof, his sats dipped, then were ok, dipped, then were ok. The nurses put him on oxygen to try and help lower his heart rate and stabilise his blood oxygen levels (sats). There were surgeons, and doctors from the pain team, and a whole new load of people that I just couldn't tell you who they were.</div>
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Then.....there seemed to be a lull. A surgeon came in, he kicked everyone else out, it was that surreal calm before the storm again. He said 'Hi Mum, I'm just going to have a quick look......' he put two fingers just below Rowan's ribs on his right hand side, he pressed it, very gently, twice. He looked at me and said 'he needs to go to theatre......now'. I looked at him and I think I must have had the 'deer in the headlights' look. He quickly, but very directly told me he needed me to sign consent for pretty much everything, he didn't know what he was going to find but I had to agree to let him go in, find what the problem was and do whatever it took to fix it. I just nodded like a nodding dog.....his registrar came in with the form I signed it. I put my trust in them completely. Rowan was in theatre by about 0010. It all happened so quickly. It's the first time I have felt so completely nervous lifting him off of his bed, onto the trolley, and watching while they put him to sleep. I was so thankful he was going to get some rest, if nothing else. A break from screaming, a break from the pain, even if it took a general anaesthetic to give him that. But, as I wandered down the dark, all shut down corridor of the new theatres, on my own while I waited for the nurse to hand everything over, panic set in, and for the first time I started to cry, just a little bit.</div>
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Now, I never believed in all the 'supernatural', people 'looking out for you', all that kind of thing. Never. But, as I stood in that corridor, I heard a voice. Someone I knew, a friend of mine and Rowan's, who we'd spent many months in hospital with when Rowan was younger, who brightened our day every day those days, who shared in his first birthday with us, in hospital, had passed away earlier that year. She was 18. I heard her, and she told me 'it will be ok, he will be ok, I am looking after him'. I got goosebumps. I just stood there for a few minutes, the corridor was completely empty and I knew exactly who it was. I suddenly stopped crying, and felt a weight lifted off my chest. I whispered 'thanks Charlie'. I just knew then that he was going to be ok.</div>
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The nurse came out from handing over, and we headed back to the ward. She made me coffee and toast (I hadn't eaten for over 12 hours, or drank anything). I pulled out my bed to lay on. I started to read a book but I just couldn't concentrate. I ended up falling asleep for an hour or so. I then woke up to cold coffee and cold toast. I just couldn't stomach it. At about 4am the nurse came to get me to say he was done. Off we went to collect Rowan. I was anxious, I didn't know what they'd found, I didn't know what they'd done,I didn't know if they'd been able to fix whatever it was, but I just wanted to hug my baby tight. </div>
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As we arrived in theatre, I was more than a little bit shocked. You see, in the middle of the night there is no 'recovery' team, so the surgeons and doctors and everyone literally do their job, and ring the nurse. He was not ready to be collected, and he was certainly not ready for me to see him. But I did. He was blue, and he was on the bed shaking, he looked like he was having a seizure. I felt sick. I couldn't take my eyes off him. The nurse started asking questions and there were no real answers, the surgeon came over and started to tell me what he had found and what he'd done. All of a sudden I went dizzy, I asked if I could sit down, but before I had finished my sentence I had passed out. I came round, on the floor, with a load of monitoring equipment on me, my blood pressure had plummeted, my blood sugar was way too low. They gave me a chocolate bar, and put blankets on me and just waited. I was fine. I hadn't eaten, or drunk, and I think seeing Rowan like that just topped it for me. The doctors put me on a trolley and wheeled me back to Rowan's room, with the instruction to EAT AND DRINK NOW. So the other nurse on the ward went and found me whatever she could to eat and drink. About 20 minutes later Rowan and I were reunited in his cubicle.</div>
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Rowan was hooked up to double dose ketamine, and morphine on a nurse controlled pump, he had background running, and could have pushes (boluses) as well. He was on IV fluids only, with antibiotics and all sorts of IV medications. They had managed to look through keyhole surgery. He had a new gastrostomy (tube into his tummy) in, only it wasn't technically a gastrostomy tube, but it was all they could find in theatre. I was told he would not be able to be fed either oral food, or milk feed into his jej (the tube in his small bowel) for 10 days. They explained that they had found his stomach had been disconnected from his abdomen wall. This meant that his gastrostomy wasn't actually in his stomach, but in the peritoneal space. (the no mans land between all your organs). So when we gave him ibuprofen earlier in the day it had gone in this space, and caused a really bad case of peritonitis that would need complete rest. They had also stitched his stomach back to his abdomen wall. I was told that he had been a very lucky boy, and how he was not currently in intensive care, they had no idea. But I knew. I got another wave of goosebumps, and I knew it was Charlie. She had looked after him.</div>
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<span style="font-size: x-small;">The picture from the surgeon, his gastromstomy button (the very circular thing at the top)</span></div>
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<span style="font-size: x-small;"> and then his stomach, the pale pink thing underneath. The gastrostomy </span></div>
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I finally fell asleep about 6am. I was woken at 830am by the ward sister and the head of nursing, who wanted to go through my version of events. At this point I hadn't really processed anything. But for them, the investigation had begun into finding out what had happened. It turns out that there had been a lot of clinical errors in that 24 hours I found out much later when the report came in. But it was all dealt with, and will be dealt with.</div>
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For Rowan though, it turned a 3 night stay into a 32 night stay, as we had problem after problem. His heart rate was consistently too low, so that needed checking out. He developed an allergic reaction to some of the antibiotics they had put him on to combat the peritonitis. He kept spiking a temperature. He developed 'collections' of fluids in his stomach, that took a very long time to resolve, and very nearly required draining. He had a reaction to the ketamine, so ended up on morphine only. He remained in pain for a very very long time. He lost a lot of weight. His appetite didn't return. They tried to feed him a few times after the 10 days was up, and it increased the pain to an unbearable point so they gave up. </div>
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<span style="font-size: x-small;">Jo and Steve came to visit and really cheered me and Mummy up, </span></div>
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<span style="font-size: x-small;">and despite some incredible pain, pulled funny faces with Jo :o)</span></div>
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After 32 days I took Rowan home. 24 hour a day TPN. No oral food except lollies. No enteral feed, believing he just needed a few more weeks gut rest, this would all be temporary. Extra pain relief including IV paracetamol, Buscopan, extra antihistamines, extra anti sickness medications. They left him on a small amount of TPN to maintain his blood sugars, and believing at some point he would get hungry enough to start eating again, and he'd start asking for food.</div>
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A year on, Rowan never has regained his appetite, not really. He has had a couple of admissions where they have tried to feed him again, into his tube, and after 4 hours of a teaspoon an hour of just dioralyte, they had to give up as he was in too much pain. He's had a few more tests to try and find out why, and they all come back normal. He lost 4 kg in a small space of time, so they have more than doubled his TPN. He still experiences tummy pains. Eating-wise we have progressed a teeny tiny bit. He still has his lollies and very small amounts of puree, which then drains out of his gastrostomy, into a drainage bag, so he doesn't really get any of it, and this causes more pain. We are struggling to keep his blood levels at an acceptable level. He has had a line infection. He is in the wheelchair more than he is out of it now. And he is still on TPN 24 hours a day. He can not be left with anyone but me, and a qualified TPN trained nurse, therefore I went to school with him every day for a term until a nurse was found. A close friend of mine was trained up to be able to also do Rowan's TPN, so I can leave him with them too. But it's very restricted, and we are together more than we have ever been before. Our life changed dramatically that day. But, it taught me that we really do not know what is around that corner, we went in for a routine test, and came out with our lives completely different. It is a deterioration in his quality of life, but, neither he nor I are going to let that stop us. We have just found new ways for him to do the things he wants, and deserves to do. He is living his life still, just in a slightly different way. We had our second ever holiday a few weeks ago, and it was fantastic, stay tuned for that blog post! For now, just remember, humans make mistakes, they are not malicious. Accidents happen. You don't know what is around the corner, so appreciate what you have, and live for the here and now.</div>
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<span style="font-size: x-small;">Rowan bowling, in his wheelchair, soon after we came home Rowan meeting a Beefeater at the Tower of London, after</span><span style="font-size: x-small;"> the Believe in Magic Christmas Party.</span></div>
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Rowan's bag, that he now takes everywhere with him.</div>
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<br />MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com2tag:blogger.com,1999:blog-6167142684357502205.post-7339457285866798712014-08-14T20:53:00.002+01:002014-08-14T20:53:52.800+01:00Goodbye Childhood Hero<div style="text-align: justify;">
It's been a long time. I have ummed and ahhhed about the whole blog thing for the last 18 months or more. It's all been a bit chaotic, but I feel compelled to pick it up all over again. I kind of miss it. And I know a few of you (just a few) have missed me too, I know this because you keep asking me if I am writing again. So here I am.</div>
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As we all know, ok maybe you don't ALL know, in fact, maybe none of you know, but anyway, my absolute, 100%, favourite actor died earlier this week. Robin Williams did not just have one stroke to his brush. He did a bit of everything, and I can honestly, hand on heart say he did it all very well. He really did have a go at everything, and gave it his all. He entertained me as a child with Mrs Doubtfire, Flubber, Toys, Hook, and plenty more, and he still entertained me as I was as adult, with What Dreams May Come, Insomnia, RV, World's Greatest Dad and many more. And to this day, he entertains my children, he made films that are timeless. Not to mention the stand up comedy! No matter what my mood, what my mental health is doing, there is a movie for it all. Whether it's enteratining the kids so I can pee in peace, or whether it's watching something that requires my undivided attention (once the dog is fed, the kids are in bed, the IVs are done, the housework.......sod the housework)</div>
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Robin Williams' death, has reported to have been suicide. I have avoided most articles written about the event. I don't want to know. I don't feel it's my business to know. I don't have a hunger to read absolutely every article that has been released about his death, or his mental health, or anything else right now. I don't want to read people's opinions on what he did, or why. His suicide has affected me in so many ways, that I really didn't expect at all. He was my only childhood hero. And that never wavered. Only a few weeks before he died I watched What Dreams May Come for the millionth time (or so it seems) and it never gets old. Despite not wanting to know what the various forms of media are reporting with regards to the death of such a legend, it is hard to avoid absolutely everything. And while I am pleased that there has suddenly become such a huge awareness of depression and suicide, I feel a little disheartened at the general misconceptions around depression and suicide, that don't seem to be challenged.</div>
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The few things I have seen recently, that made me sad are as follows</div>
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Suicide is a permanent solution to a temporary problem - who knows that that problem is temporary? Who knows the true reasons a person committed suicide in the first place? Do you really know what suicidal feels like? At that given moment, when you feel suicidal, you feel like there is NO other options, and while you, as the 'non suicidal person' may see 1000 options, that doesn't mean, for the suicidal person, those are viable options. </div>
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Suicide is selfish - This one bugs me quite possibly the most. Suicide....is....selfish. Really? I understand to an extent, that people think those who commit, or attempt suicide, have no forethought about how those closest to them, may feel. Now I have been there, more times than I can count, and I can tell you know, it's not for selfish reasons. The thought pattern that I, and many people I know who have felt suicidal, is that the world would be a better place without you. Your mother/brother/father/sisters/children/friends would be free, happier without dealing with a depressed person, you feel like you drag them down and are a burden on them. Is that selfish? And while many people do think about those they love, and this deters them, there are those who truly believe that their friends/relatives will, in time, get over it and move on, especially as their lives will be better without said person.</div>
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S/he should have gotten help - Who says that suicidal people don't ask for help? Some do, some don't. Some do ask for help, but that help comes too late, or they live in an area where that help is not available, or it just doesn't help. Sometimes the person offering the help, makes the situation worse. And yes, some people don't ask for help (like me), and we fit into the difficult box, no one knows. And, if no one knows, then no one can help. But....what if you ask for help, and it doesn't help. What if you ask for help, and someone laughs at you. What if you ask for help and that person doesn't take you seriously, and just thinks you are 'doing it for attention'. What if, that person, wants the complete opposite, to be left alone. Doesn't tell anyone, because they don't want people looking at them sideways, reading your every movement and breath, worrying about them constantly. There are often too many what if's, with undesirable consequences. </div>
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Depression, I feel, is a word that is used WAY too often in society now. 'I'm feeling a bit depressed today'....no you are feeling sad. I even hate 'this weather is depressing'.....and while 'depression' is 'sadness', to an extent, it is much much more than that. Feeling suicidal is a symptom of being depressed. This kind of blase use of the word depression, while many think it's a good thing, I think is wrong. I believe, and have experienced, that 'being depressed' then becomes a bit of a 'fad'. Everyone is depressed. So and so was depressed monday, wednesday, friday, and alternate sundays. It doesn't work like that. Not for me, or many people I know who have depression anyway. It's there, constantly, like a nagging.....naggy thing. And every day you battle it, no matter what, some days you win, some days you don't, but it never goes away. Never. Even, on the best day you have ever had, it casts a shadow, and taints it in some way.</div>
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Many people believe a depressed and suicidal person, looks like one of two things. Either, they are expected to be pretty much unable to function. Don't wash. Don't eat. Just sleep. Stay in bed, all day, every day. Literally do nothing. And people assume feel sorry for themselves. Then there is the kind of suicidal person who self harms (by the way, people self harm for MANY reasons, not just because they are suicidal), stands on top of car parks threatening to jump, explains in great detail how they are going to do it, write suicide notes, rings everyone to say goodbye, it's almost predicted. And while I don't doubt for a second there are people like that, there are also many, many, many people who function at a completely normal level, for a long time, there are people who function under immense pressure and stress, and its when that fades, that's when they actually end their lives. There are people who go to work, socialize, do their housework, eat properly, don't drink, don't smoke, exercise, all those things we are told to do to improve our mental well being, and yet still, think about suicide, on a daily basis.</div>
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I often don't talk about my mental health, as I feel it's a protected, and very personal thing, not to mentioned the fact I live in complete denial 90% of the time, and, as I am sure I have mentioned before, have experienced and continue to experience the most shocking level of discrimination, from the most shocking places. However, unless you have felt suicidal yourself, you have no idea how that feels. So don't say you do. And, even if you have felt like that, even attempted it, and survived, you STILL do not understand how that person feels, as it's unique to them, to me.</div>
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I guess the point of this post, was more for my benefit. I am genuinely upset that Robin Williams ended his life, and that he is gone, and although he leaves a huge legacy behind him, no one will ever forget that he ended his own life. The world is full of judgments, and none of us will ever understand the reasons he did what he did, or how he felt. Some of us may have an inkling, but his suicide was not for publicity, or selfishness, or whatever else I have seen. He was a man, in pain and suffering, who could see no other way. I wish everyone could analyse a media article, and believe, for a few minutes, that they may be fabricating or embellishing many of the 'facts', and then consider the fact that a man has died, tragically. Instead of using this as gossip, or in a negative light, look around you, and wonder whether than lady who just walked past you is suicidal, maybe that man over there, with the huge grin on his face while his kids play in the park, has made his suicide plan. Maybe your friend, who seems a bit down recently, is more down than you thought. Maybe that friend who ALWAYS refuses to go out with you, is feeling alone and suicidal or depressed and just wants someone to make them a priority, just for once. Open your eyes to the world people, it's happening all around us. If Robin William's story does anything for this world, other than leaving an amazing legacy, let it be him that opened your eyes to the reality we live in.</div>
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MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com1tag:blogger.com,1999:blog-6167142684357502205.post-2144030606716641242013-01-05T22:45:00.000+00:002013-01-05T22:45:19.067+00:00Sorry for the absence!<div style="text-align: justify;">
So, I haven't been here for a while. I feel I owe you all an apology! The last few months have been absolute chaos.</div>
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I'm not really sure where the beginning is, but towards the end of last year, September in fact my little family went from a two parent family, to a one parent family. I am not prepared to go into details. But it was a whirlwind of court, changing the logistics of the house, there was a kick back from the children, to see how far they can now push me, and it's been quite chaotic!! All this, while being very depressed, and being offered no extra support whatsoever. Where I live I have no family support nearby, and very very few friends. It's been far from fun, but I am pretty sure the children and I are on an even keel now!!</div>
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So, during all that, in October, Rowan and Ayden were admitted to GOSH, under the Endocrine team for testing. These tests were mainly for Ayden to be honest, and just a general 'let's check Rowan too' type thing. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmO38duCCuzccNPRJWtcYW3SeAIRtgC4hUFwWtSn_P4qxw3PG4IN_pmqmv_BHiYzET6lBkt1_8kSW1O4cJAKkGIu_9BwV4JEI5o6PBlI41oWjEsKEN9iOZOPqoP0FeIMMqqsg0uercmJQ/s1600/553529_10151165676018113_923630488_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmO38duCCuzccNPRJWtcYW3SeAIRtgC4hUFwWtSn_P4qxw3PG4IN_pmqmv_BHiYzET6lBkt1_8kSW1O4cJAKkGIu_9BwV4JEI5o6PBlI41oWjEsKEN9iOZOPqoP0FeIMMqqsg0uercmJQ/s320/553529_10151165676018113_923630488_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">We found those magic wants you are all looking for!</td></tr>
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So they did a profile for Rowan, and a fast, to see how long he can fast. He managed 4 hours. Which is about the same as last time thankfully. So that means he can go 4 hours without eating or drink anything but water, before he gets to a 'dangerous' level. While we were there, Rowan's gastroenterologist came to see me. They are concerned about the way that Rowan eats (like a pig) and the quantity and frequency he eats, and that the more we reduce his TPN by, the more he seems to eat!! There are a few things they would like to test him for, the main one being Prader Willi syndrome. It's highly unlike to be this, and if it is, then it's the most unusual presentation they have seen, but the fact that he has hyperphagia (obsessive compulsive eating) is the biggest factor in PWS. They also are looking at a referral to see another doctor at Addenbrooks, to look at the chemicals in Rowan's brain. There are problems again with Rowan's weight, but more to do with being too heavy for his height. In reality he's not gaining very much weight at all, but he's not gaining any height, meaning his BMI is getting too high. Due to this we are now cutting down his TPN, to try and get him off of it, or at least to a 'static weight' situation.</div>
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For Ayden, there were a few developments. Ayden had a test that stresses the body, and then they check levels of hormones to see whether they are working correctly and at the right level or not. For Ayden they wanted to check his growth hormone mainly. A previous test at another hospital deemed his growth hormone level too low, therefore he was on daily injections to replace this hormone in the hopes he would gain height. This test however, resulted in completely normal growth hormone levels. It looks like he just needed a little 'jump start'. Now he no longer requires growth hormone injections! The main reason that Ayden needed to be under GOSH though, was his blood sugar levels. I stated that they were too low, the local hospital decided I was a paranoid parent. I managed to get another doctor to refer us to the same Endocrinologist as Rowan. So we went in for 'controlled fasting'. There was a big discussion between the doctor and myself about what the results may or may not show. So we began the fast. I had repeatedly said that Ayden was waking up at 3am, with his blood sugar being too low. We were eating dinner at around 5pm. Therefore only managing 10 hours.</div>
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Basically, we starved Ayden, and checked his blood sugar every hour, to see what was what. After 8 hours, his blood sugar was 3.4. Usually we would be treating that. However, in order to try and find the cause, his blood sugar needed to go under 3. 2 hours later, 10 hours into the fast, it was 2.9. Just as I said, 10 hours and it's way too low. It took quite a long time to get the 'results'. The results were this 'Ayden fits into a very very small group of children who can not fast, for reasons that are unknown. We are pretty sure that, like the other children he will outgrow it by the age of 8 or 9.....so only another 5 years to go' in the meantime, he can not 'fast' any longer then 10 hours maximum. That means waking him up before I go to bed for a drink, with some carbohydrate powder in. And it means a very specific plan if he's unwell. Lots of blood sugar testing, and precautions. Generally though, he's ok! I was a little upset to start with, at the prospect of blood sugars for the next 5 years and precautions and worrying about ANOTHER child's blood sugars, but at the same time, I was relieved that the doctor took me seriously, and identified that I was not a paranoid parent, just seeing problems in Ayden because Rowan has problems. You'd have thought by now, with all the 'little things' they ignored with Rowan, they'd be a little more cautious as the 'little things' are actually 'big things'!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-9XXWuLd7ZlVETrA3prIc6tYQQ5GndGEkDg2ey8CFpb7RoSuCNCGHvtLORpDvZwmuAMF7jdJsSYEsRQeYnD3fcAcu-NZ-UhaH-wzzTijF-Q-S4N6vMAmLv0yFgLG2oOnM-TAO4PDKUII/s1600/552482_10151151620653113_1648859028_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-9XXWuLd7ZlVETrA3prIc6tYQQ5GndGEkDg2ey8CFpb7RoSuCNCGHvtLORpDvZwmuAMF7jdJsSYEsRQeYnD3fcAcu-NZ-UhaH-wzzTijF-Q-S4N6vMAmLv0yFgLG2oOnM-TAO4PDKUII/s320/552482_10151151620653113_1648859028_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"> We went to a Pirate Party at Hamley's!!</td></tr>
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Since then we've just been battling through the days, me and the kids. Re-jigging life, and trying to get things working for the new setup. Working as a new team. Lots of trial and error. The biggest battle I have had though, is getting support. I was assured that once I became a single parent, I would get a greater level of support, especially with my mental health issues being present. This wasn't true, and still isn't.</div>
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Rowan is due to go to GOSH at the end of January for some motility testing, to try to understand how his gut is (or isn't) working. These tests were first mentioned when Rowan was 9 months old. He will be 4 in April. Originally these tests were going to be done in November, but with the change of situation at home, it was pushed back to January. I knew the exact dates during the admission in October. The plan, from what I had been told, was that social services would find me a 'respite family'. So, if Rowan ever needed to go to hospital, or I needed a break, or a school run doing or something, I would call this family, and they would have the children/child for me. To offer me a safety net, and options. So...I informed social services of the date of the admission as soon as I was told it. Nothing was really said.</div>
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Time has gone on and on and at the beginning of December I started to worry that this 'family' had not yet been found. (I was also getting extremely frustrated that at that time, they hadn't actually done anything to help me, despite me struggling with the logistics of school runs etc). So I started hassling. We have 6 weekly meetings to discuss what's going on, who needs to do things, what I need extra help with, any concerns etc. These meetings tend to always go the same way. Although, the meeting just before the children broke up from Christmas, was shocking to say the least. I was informed, a month before the January admission, that they had known about since October, that they would NOT be offering me ANY support. No childcare. There are no 'resources'. So what am I supposed to do? I have a child that needs to go to GOSH for tests that have been on the cards for 3 years. And I have 3 other children who can not come with me, need to go to school for consistency need stability. As I said earlier, I have no family nearby and very few friends. (2 in fact!). What was I supposed to do? Social services weren't interested. They came up with a whole host of suggestions all completely unsuitable, from putting them with family members hundreds of miles away who don't know my children, or their needs, missing school for the period of 2-3 weeks, to asking me to leave Rowan at GOSH, visiting him at the weekend. </div>
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I was distraught, and felt very very let down. I was also very very angry at the suggestions, I am trying to keep my children as stable as possible. Give them consistency School is the constant that they will need at a time when Mummy and their little brother will be away. They need to feel secure and know what's going on and when at all times. Social services were not concerned about the same things I was. For them it was a 'resources' issue. Not a 'need'. And who bares the brunt of the lack of resources? My children and I. So, I had been put in a situation that meant I wouldn't be able to take Rowan to GOSH, for the much needed tests. Therefore, not meeting his medical needs. However, I had no childcare, therefore I'm not meeting the other children's needs either. I can't win can I? I was called manipulative and obstructive and all kinds of other things. Is it so wrong that I want what's best for my children instead of what is best for their budget??</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZODOsahkSTy8Lw5_eFHJK4yYjAfZC0mn7HiD7BUkOUCwl1XunhcOXgo9Gk1ug9FrUI3LItAX4mQX4UV2D77V4QaMoy-SHG6Y9wR3tQOwLfrtwZgbCIzTGOoq1PzSB4JW2VaRqs-iWVhY/s1600/261567_10151225849928113_1646126192_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZODOsahkSTy8Lw5_eFHJK4yYjAfZC0mn7HiD7BUkOUCwl1XunhcOXgo9Gk1ug9FrUI3LItAX4mQX4UV2D77V4QaMoy-SHG6Y9wR3tQOwLfrtwZgbCIzTGOoq1PzSB4JW2VaRqs-iWVhY/s320/261567_10151225849928113_1646126192_n.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trip out of the hospital for a 'offee' with Mummy (ok his is tea)</td></tr>
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In the middle of all this, Rowan was admitted to my local hospital. He had to stay in overnight. He needed IV antibiotics for 10 days, 4 times a day. For a feeding tube that had been infected for close to 5 months with no let up for more than 48 hours. I was distraught. I was on my own, with no help, and now I would have one children in hospital and 3 at home. What was I meant to do? We called on social services. It's a crisis right? They are there to support me right? WRONG. Social services weren't interested. They told me Rowan was safe in hospital and what was my problem, leave him there and go deal with my other 3 children. They have no idea. Would you leave your 3 year old in hospital all by themselves? I have to admit the play staff (also known as pink ladies) were fantastic with Rowan, as they always are, and without them I don't know what we'd do!! The nurses fed Rowan food that he was intolerant to, clearly not reading his notes AT ALL. And were are not talking ONE thing, we are talking LOTS of things, from toast, to glass of milk, to cereal with normal milk on, allsorts. Rowan spent a LOT of time on that ward, they are supposed to know him. And yet, they got his diet SO wrong, when he's been on the same diet since he was born!! We had all kinds of incidents, from TPN being connected 4 hours late (and risking his blood sugars dropping, but no one checked his blood sugar so they wouldn't know if he was hypo or not) meaning he was connected 4 hours longer the next day, preventing him from being to go out for walk, or anywhere infact, to not changing his nappy frequently enough leaving him in a right soggy dirty mess. This is where he's safe yes!? Really!? He wasn't poorly, he just needed some IVs, therefore on the priority list, he was fairly low down. But like I said, the play staff were fantastic, as always. They are completely indispensable. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzrTTTBEINDAJBTMKi2I7zohRT96ORUdncKPGapt6HdBKVllv5DgwqFVgxFbM1aOFkK57mgYTqhbvjdXhwM-8ZgBlzuAEkxWmzunM13ew2A5ySVOIyg9z1BshyR_xKBxg9UayhmgwKCbE/s1600/533536_10151194851428113_311816934_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzrTTTBEINDAJBTMKi2I7zohRT96ORUdncKPGapt6HdBKVllv5DgwqFVgxFbM1aOFkK57mgYTqhbvjdXhwM-8ZgBlzuAEkxWmzunM13ew2A5ySVOIyg9z1BshyR_xKBxg9UayhmgwKCbE/s320/533536_10151194851428113_311816934_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Somedays the pain wins.</td></tr>
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Anyway, social services clearly didn't help. I ended up a frazzled mess, couldn't work out where I was going or when or anything. I had the RSPCA turn up, accusing me of having a dog 'living in filth' which was rubbish, and the case was closed. School pulled it out the bag. They put all 3 of my children into their after school club. Which I must remember to call 'zigzag' or Ayden shouts at me loudly!! So for the whole 10 days (well 8 school days I think it worked out to be) they made space for my children. That way I could take them to school, run home, do an hour housework, and then dash to the hospital to see Rowan for the day, pop out for appointments/supplies, then pick the children up from school later on. It was chaos, as I also needed to make sure Katrina still got all her activities in that I had promised, Brownies, young carers, and other activities too. I made it through though, by the skin of my teeth. Still very concerned about the GOSH stay though.</div>
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Then, my Christmas Miracle occurred It appeared in the shape of a Head Teacher. The head teacher was at my meeting, as he is now regularly, and is a wonderful source of support and information for me and my children. He had a suggestion. A suggestion that sounded ridiculous to start with. A suggestion that seemed pointless and hopeless, but I was desperate. What was the suggestion? That he would write a letter, appealing to the school community to help out in this situation. I had nothing to lose. I wasn't overly convinced that there would be any response, we are talking 3 children, for 2-3 weeks. Who in their right mind would take that on? I suggested to the head, that dependent upon the response, I would be happy for the children to be split up if necessary, maybe the break from each other would do them good? Appreciate each other a bit more perhaps. It may be easier to find people to have them. And if it meant they could still go to school, then it would be worth it. I wasn't hopeful though.</div>
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The meeting was held on the Friday. Monday morning I proof read a copy of the letter that was sent out. Here is a copy of that letter:</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLuToHs_hM_TBhqO1BbBxsFqZTn-qoRtxbDymOCjtyUpQJiXt0KHhrP86bWac0aEFtVqXcimiJjWAv0Y609oFHIDRqp3PXrLF1-gKZChuQexB4HNX3Xv5WcVkPJHv0Qo_69AxNWYumgEY/s1600/576512_10151246968883113_958117664_n+(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLuToHs_hM_TBhqO1BbBxsFqZTn-qoRtxbDymOCjtyUpQJiXt0KHhrP86bWac0aEFtVqXcimiJjWAv0Y609oFHIDRqp3PXrLF1-gKZChuQexB4HNX3Xv5WcVkPJHv0Qo_69AxNWYumgEY/s640/576512_10151246968883113_958117664_n+(1).jpg" width="476" /></a></div>
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The letter went out to all the parents on Monday at the end of the day. This was the last week of school, the children finished school on Wednesday for Christmas. Tuesday morning, the childminder dropped the children at school for me (which I pay for). I took Rowan up to 'nerfery' for his last day, and his Christmas party. (By the way, for anyone who is interested, Rowan LOVES his nursery!!!) As I stood in the queue to collect Rowan at the end of the party, 3 members of staff informed me that the head wanted to see me. Cameron and Ayden were going to the childminder after school, and usually Katrina would too but she was due to go out with Young Carer's that day so I was taking her home. I figured I had enough time to pop and see what the head needed to see me for, before Katrina came out! I found the head, and he informed me that he'd had a really good response from the letter. Less than 24 hours after it went out.....we had had responses. He'd looked in his diary at the list of names and I was gobsmacked. Very very very shocked.</div>
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Some of the names I didn't recognise. Others I did. At that moment it hit me, these people care, and want to help. School asked people to open their homes to my children, and so many did. Some people offered to have one child, some offered to have 2. With the amount of names on that list, I knew that we could sort this. As I said, some of these names I recognised. Why did I recognise them? They were my children's friends right? Wrong. They were teachers. Yes. Teachers were offering to look after my children for me while I take Rowan to GOSH. I cried. I just couldn't believe what was happening and I wasn't really paying attention. The head told me that he would be happy to have ALL 3 of my children at the weekend, so they were together for weekends. Another teacher at school also offered to have them for the weekend. The school will police check all the people that offered to make sure they are safe (school suggested this, not social services). So, on the Wednesday I know a few more people approached the head, and even now as I type this, I am in shock, and disbelief. </div>
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Why did I write this? I just want everyone to think a minute about their school. Would you approach them to ask for help in my situation? If you work in a school, is this something that your school would offer vulnerable families? Would you even consider asking them? In my situation I have found an amazing school. I have said that repeatedly, and it's just confirmed for me over and over again. I never would have asked. I am not a social butterfly. I appear at the school, and get the kids into the classroom, dash home. I appear to collect my children, no conversations, grab all the children, dash home. My children don't have play dates, or sleepovers. I don't meet the other mum's. I don't stop and talk to other parents if I see them in town. While waiting to collect my children I find the quiet corner. And yet....everyone knows who we are. OK, so the small child in the wheelchair with mickey mouse wheels probably screams 'GOSH patient' but still. If your school sent a letter home asking for help, would you help? Would you see if a family member of yours would help? Grandparents? It is such a simple idea, and for me had huge results. It highlights the importance of a good school. Not only that, but for me, it highlights that the head teacher of my children's school has the confidence in the school community that they would help. That says a lot about him.</div>
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Social services budgets are being cut. Resources are being withdrawn. You've probably heard this on the radio or news or read it in the paper. There are lots of things we 'used' to get, that are no longer available. From school runs, to sessional workers, to respite, to play schemes being paid for, to a lift to appointments. I get nothing. I do not agree in any way shape or form with the way my case has been and is being handled. I do not believe that a family in the situation I am in, should get no help. In this case, social services' cut backs, would be preventing Rowan from receiving tests and treatments that he desperately needs, and has needed for a long time. This is exactly what is happening around us, you may not know about it, it may not affect you, but it's happening.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ypu-6vGAFLojroEZHDkRLaPY1BRhaT_AbV-N3feojFKWrrk2SElBLHKirEBHmOsIocc9_AkFiH1RD6TgwFvl83XJsBiv6OQGtGyNDwKh2mZEaW4pxptDZVQX7SwcMOoxHILnvaMCiE8/s1600/540960_10151151638148113_785802196_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ypu-6vGAFLojroEZHDkRLaPY1BRhaT_AbV-N3feojFKWrrk2SElBLHKirEBHmOsIocc9_AkFiH1RD6TgwFvl83XJsBiv6OQGtGyNDwKh2mZEaW4pxptDZVQX7SwcMOoxHILnvaMCiE8/s320/540960_10151151638148113_785802196_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ayden had his face painted as Batman!</td></tr>
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So, I am just going to finish by saying, that we WILL be going to GOSH at the end of the month, and while this is far from an event to celebrate, I celebrate the fact that the school community, the parents, and teachers, TAs, dinner ladies, cleaners, receptionists, and the headteacher. Everyone is so important, and so supportive. I just wanted to highlight the fantastic school that my children attend. And to anyone from the school community who reads this, I just want to say Thank You. Even if you couldn't help out, the fact you maybe thought about it, or read this blog, tells me that you are interested (or very nosey!) and spent a few minutes (ok maybe 10 this is a long post) thinking about me and my children. Thank you.</div>
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<tr><td class="tr-caption" style="text-align: center;">Rowan has new 'Mr Tumble' wheelchair gloves!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOe38y49LI7dycJsMDzkKv9RvwnO5OtevuW8u06_kN0S60EVB_Ph-ZaRYLUlDZbl6jsfrOzAGQ9_MWiFQqXxGdhL2M2TiKc3qsjiY_qOJvlqjDw9alUM_S-Vx_xjJJInMqpP4hO1IFbaM/s1600/556746_10151225850058113_580669409_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgOe38y49LI7dycJsMDzkKv9RvwnO5OtevuW8u06_kN0S60EVB_Ph-ZaRYLUlDZbl6jsfrOzAGQ9_MWiFQqXxGdhL2M2TiKc3qsjiY_qOJvlqjDw9alUM_S-Vx_xjJJInMqpP4hO1IFbaM/s320/556746_10151225850058113_580669409_n.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cameron was evacuated! And LOVED it!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipfh8HO0uuY2WC9sJGKjdaOTZdvanueBDMvXyN5sPLevPzKAAq2YZDU5AVjrDDYyKb9jt1qPgBlxcfKuhq0TjT_8wZYZR4jsvexWwLa40iAVsYMxLVTMIhUNgWbubZKWwkjcBlBKUpL9I/s1600/75719_10151151628883113_1440581690_n.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipfh8HO0uuY2WC9sJGKjdaOTZdvanueBDMvXyN5sPLevPzKAAq2YZDU5AVjrDDYyKb9jt1qPgBlxcfKuhq0TjT_8wZYZR4jsvexWwLa40iAVsYMxLVTMIhUNgWbubZKWwkjcBlBKUpL9I/s320/75719_10151151628883113_1440581690_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Katrina had her face painted at the 'Believe in Magic' party!!<br /><br /></td></tr>
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MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com2tag:blogger.com,1999:blog-6167142684357502205.post-81523019400859133002012-08-10T10:28:00.001+01:002012-08-11T22:32:13.500+01:00Latest addition to the madhouse......<div style="text-align: justify;">
The latest addition to the madhouse, is definitely not what you'd expect. The reaction to her, I didn't quite expect either. It arrived a couple of weeks ago, and came complete with an 'adoption' certificate. We had no idea what to call 'it' and, infact, we weren't even sure if it was a boy or a girl. So we decided to ask the children. Cameron and Katrina decided they would just pick names that they liked, and shout them out for the rest of us to comment upon. Ayden sat quietly, looking at 'it'. Then he declares 'It's a girl'......so I looked at him and said 'Ok, it's a girl'.....and he said 'No, look, it has a bottom.....but no willy, because THIS is a tail, I have a bottom and a willy because I am a boy.....no willy means a girl'. I wasn't quite sure to address that, other than that clearly he was right. I found it rather fascinating that neither Katrina or Cameron were even bothered, and clearly saw 'it' as an 'it' where Ayden saw 'it' as a.......well.......personality.</div>
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No one could still think of a name for our new addition however. We searched and searched and searched. It was harder to find a name for our new addition than I would have thought. So.....what is this 'it' we are talking about?? We would like to introduce you, to our latest addition........</div>
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DOMINO</div>
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Rowan has become very very attached to Domino. We had a few settling in problems, and it took a little while for us to work out where Domino will be sleeping, and apparentl what she likes eating, but both Ayden and Rowan have decided that Domino likes McDonald's chips with curry sauce, along with diet coke to wash it down.</div>
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Domino's first outing was a big outing. Domino had to come with us to the hospital. Rowan hates the hospital. So we decided that Domino deserved her first day out, and Rowan could show Domino all the things we have to do at the hospital, this made things a lot better for Rowan!!</div>
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So here are the pictures of Domino's trip to the hospital.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjstxVpJG34sRTQCxhy7LqpixKST0l4cdB9PA8gcMy3ONKFTKygAXaPbZIW1-xAHn0LzUmW01MsP8jYAU8nuWvo2ljH2noMMzmm5XsIuudwOPpawxj9nKRwZvw81DU5429dJfWtmME31tw/s1600/651.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjstxVpJG34sRTQCxhy7LqpixKST0l4cdB9PA8gcMy3ONKFTKygAXaPbZIW1-xAHn0LzUmW01MsP8jYAU8nuWvo2ljH2noMMzmm5XsIuudwOPpawxj9nKRwZvw81DU5429dJfWtmME31tw/s320/651.JPG" width="239" /></a><br />
First we had to sign in, and then we have to wait to be called.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDF7tzHC0YS4adzDt1m5wK7qPWt9polD38P74JkO4qOx3bc7_ESrzBJ6xv450M5VcBvDQwQv79Zn_vljcng88qR2hSNS-onFqfvV1qMIzmmFY0IwhNYMSNJDFtY-p_ObNSdHbhm6NhhmY/s1600/653.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDF7tzHC0YS4adzDt1m5wK7qPWt9polD38P74JkO4qOx3bc7_ESrzBJ6xv450M5VcBvDQwQv79Zn_vljcng88qR2hSNS-onFqfvV1qMIzmmFY0IwhNYMSNJDFtY-p_ObNSdHbhm6NhhmY/s320/653.JPG" width="239" /></a><br />
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While we wait, there are toys we can play with, Rowan decided that Domino needed to try some new foods, McDonald's chips just aren't good for you.</div>
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When the lady with the blue T Shirt on calls your name you have to go into a special room, where they weigh you and measure you to see how big you are growing!! Domino didn't like the scales, she kept sliding off, oops.<br />
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Once that's all done, we have to wait for the doctor to be ready. Rowan's doctor was a big grumpy and wouldn't let us take a picture of Domino with the Dr.</div>
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After the doctor's appointment, we have to walk through our town to go back to get the bus. In the town we live in, there is a really nice art project. It's called 'Wild In Art'. Last year, it was the 'pride of Northampton' so all the schools, and lots of other organisations too were delivered a 'lion'....they were plain white model lions. Each school then decorated them, then they were displayed throughout the town. They were absolutely gorgeous. Some adult artists made some too, and there were lots of different ones. Outside our main shopping centre was a Lion that looked just like Alan Carr! With the goofy teeth, and the glasses, Alan Carr came from Northampton! It was very very funny! So this year, because the project was so successful, it has been expanded to cover all kinds of different animals, with all kinds of different designs. So Rowan and Domino went through town seeing how many different animals we could find, what they looked like, and then posing for photographs. It gives a little bit of interest to our town! And they are hiding all over the place!!</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieuKeHJCWW_g8G2QFkaydK3zJkZ1w3RSkdlBorVGTTnkYg9Hk6VIHxY6eTC8-0HIxxVxEpgPRuNf6x_ZDSwQaxb2xA7GavH60Alwg-B2YEBWUMJN44TZbdHaJn9SXEwfiB3XskOToxCLM/s1600/656.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieuKeHJCWW_g8G2QFkaydK3zJkZ1w3RSkdlBorVGTTnkYg9Hk6VIHxY6eTC8-0HIxxVxEpgPRuNf6x_ZDSwQaxb2xA7GavH60Alwg-B2YEBWUMJN44TZbdHaJn9SXEwfiB3XskOToxCLM/s320/656.JPG" width="320" /></a><span style="color: black;"> </span></div>
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<span style="color: black;"> A Rhino, depicting the Balloon Festival that is in Northampton every year.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYQYEyrNWlz2PuikPD0J_ujYBjugdLb23IJ6zlPSFryfis4BXJIehRAblcjz32ygsBcKXUMn0oCbYj27GiPwT5vURdJQj0SA37fnCnOUF6hKInENDUhlPg4SDKz2gPbRCeLYGKPvZOmdc/s1600/661.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYQYEyrNWlz2PuikPD0J_ujYBjugdLb23IJ6zlPSFryfis4BXJIehRAblcjz32ygsBcKXUMn0oCbYj27GiPwT5vURdJQj0SA37fnCnOUF6hKInENDUhlPg4SDKz2gPbRCeLYGKPvZOmdc/s320/661.JPG" width="239" /></a><br />
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Domino couldn't climb onto this one, there was nothing to hold on it, and it was so tall!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTDiDKIm1yvbGBjQPld1IsE8XUJ9Q8MPShyphenhyphen_ri6nOApROdOZ3Ua4My9Jq__66s8SEBRoWnvhNAqIWIQgCFyx6pqGwHVYJqTxhZLHsGm5O06pYrWARdrkkhyzqHJ4L21KuIpXtYhGD6eAQ/s1600/658.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTDiDKIm1yvbGBjQPld1IsE8XUJ9Q8MPShyphenhyphen_ri6nOApROdOZ3Ua4My9Jq__66s8SEBRoWnvhNAqIWIQgCFyx6pqGwHVYJqTxhZLHsGm5O06pYrWARdrkkhyzqHJ4L21KuIpXtYhGD6eAQ/s320/658.JPG" width="239" /></a><span style="color: #0066cc;"> </span><span style="color: black;">This Gorilla sits in the middle of town, Rowan thinks he looks a bit like a security guard, but the label says he's a pilot.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKRiSCiTSt2I1gqmfNgFajcQl40saWKhvo6T5KaJ12PojRweLNg0Ge3gJEGjzMh5crsSFYezZM7zVUKgPd8WXaxouM2xPxRla_pt0XKRvZO4oiLDZ5YGQwEk9J7XibD47_ap9MlWu_efw/s1600/660.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKRiSCiTSt2I1gqmfNgFajcQl40saWKhvo6T5KaJ12PojRweLNg0Ge3gJEGjzMh5crsSFYezZM7zVUKgPd8WXaxouM2xPxRla_pt0XKRvZO4oiLDZ5YGQwEk9J7XibD47_ap9MlWu_efw/s320/660.JPG" width="320" /></a></div>
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Rowan helped Domino climb onto the back of this Lion for a picture.</div>
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Oh that is a lot better, a tiny gorrila, much easier to climb onto!<br />
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This Hippo is a giant blackboard! Everyone writes on it with the chalk out of the pink cups! Rowan and Domino made their mark too :o)</div>
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This is Rowan's favourite animal in town. We decided though that the Rhino needed more Spots. Lots of animal prints all in one.</div>
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We thought we lost Domino, but no, she was sunbathing on the pink flower Rhino, phew.</div>
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It had been a busy trip to town and both Domino and Rowan were very tired!</div>
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Goodnight Domino and Rowan, sweet dreams!</div>
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I would just like to say a big Thank You to the guys and girls at Post Pals, for running this project, the Dotty Project, and Thank You to Dotty for allowing us to adopt one of her Littermates. We are looking after her well and she is enjoying many days out, she is a valuable member of the family now. We have been to GOSH, we have been to the park, Domino comes everywhere with us now. Thank you. She gives us another focus when we are out and about, and has allowed Rowan to be much more interactive, although without words still.</div>
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<br /></div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-23478993038474149092012-07-25T22:46:00.001+01:002012-08-11T22:33:42.059+01:00Sometimes, you have no choice but to give up.<div style="text-align: justify;">
Just before I begin this blog post I want to say that I am not going to name names, because actually that would make no difference anyway, and would open me up to possible legal stuff going on. I will use the abbreviation CIN for 'Child in Need Team' and DCT for 'Disabled Children's Team', SW for Social Worker and SS for Social Services. Mainly because I am just lazy!</div>
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So.....Rowan went into GOSH for his admission and his liver biopsy was done. We are STILL waiting for the results however. 3 weeks later, over 10 days after we were told the results would be in. I have had contact with the team, and they are constantly checking for results but so far nothing. Is that a good thing or a bad thing? Some people say no new is good news, but what actually would qualify as 'good news' and 'bad news'. Good news is what? Things come back normal and we are no closer to a diagnosis, no closer to finding out what's wrong, no closer to finding a better treatment plan? Doesn't really sound like good news does it. Is getting an answer good news? What if that answer is a terminal answer, what if that answer means that nothing can be fixed? What if the results come back as showing something that will require an intense treatment plan that requires lots of hospitalisation and still no 'cure' (we are fully aware that there is probably no cure for Rowan especially as he still has no diagnosis). Is that good news? Or is that bad news? I guess there is no such thing as 'good news' and 'bad news' at this stage, it's just 'news'.</div>
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So whilst dealing with all this, I had news that the DCT was closing our case for Rowan. Basically, since Rowan has been born, we have been escalating up the 'social work team' ladder. We have been stuck amongst all the changes to the teams, so in the last 4 years (from when I fell pregnant with Rowan) we have been under 4 different 'teams' with 7 different social workers. Each team deeming us 'too complex' and moving us up the ladder. So.....last year after the child protection conference (which SS initiated) we ended up with two 'teams'. The DCT for Rowan (as he is a disabled child) and the CIN team for Katrina, Cameron and Ayden as they are deemed 'Children in Need' with having Rowan as their brother, their own needs, and an 'unstable' mother. The DCT funded a childminder for the older 3 children on a Thursday as an assessment they did said that we would hugely benefit from a 'break' a 'day to ourselves' seen as our family is so full on all the time. A day that I didn't have to rush to do the school run as our childminder picks them up from home and drops them off at 6pm. They also sorted out a play scheme for us last summer holidays so the older 2 children went for a week each, and Ayden went to a childminder too. They used to organise taxis for school runs when one or the other of us was away, I can't organise it myself, because of their ages, they need to make sure the driver is all checked, and therefore another organisation need to book it (even though it's the same company we always use). </div>
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So....Rowan has his nursing care package which is funded 80% by health (so the NHS) and 20% by social care (SS). Then the childminder started to be paid by the CIN team as it was for the older children. SS made promises that they would input support so that I could do my DBT course as safely as possible. So they'd put extra childcare in. I was feeling fairly......supported? OK so I'm not a huge fan of social workers, well, my social workers. I hold a grudge because of the child protection process, and the amount of times they've promised things and taken them back. But I did kind of feel like we were getting somewhere.</div>
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On the Monday we were off to GOSH, I checked my emails on the way. I had an e-mail from the DCT SW which basically said that they were closing the case. Now, I was somewhat shocked, but they tried assuring me it would all be ok, and they weren't closing the case, they were moving him to a more appropriate team, to be with the other children so we have one social worker, not two, it will be more co-ordinated. My team went nuts. There was no question time, no discussion opportunity they were just closing the case, end of story. No room for movement at all. I was not happy either. They were trying to assure me that all would be ok again. We wouldn't really notice any change, everything would carry on as it was. I don't handle change very well, and was really worried. Who was now paying Rowan's care package as it comes from the DCT budget. No one would answer me from the DCT as the case was now closed. So I started emailing the CIN SW to find out, again she was ignoring my questions. The worst things you can do to me is lie, ignore me, or hide things from me. </div>
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I repeatedly asked over the course of the week (while I was in GOSH) what was going on and if someone could explain to me what was happening to the promise of support and I heard nothing. So instead of stressing over it, I concentrated on Rowan's admission and keeping my mind focused on what was happening at the time. If you've ready any of my posts from that week, you will know that it was pretty chaotic. Due to the stress of the journey home, both for Rowan and I, and the change of going from hospital to home, it always takes a couple of days for everyone to settle back to reality.<br />
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The Saturday was filled with cleaning, washing, tidying etc. And then Sunday was a PJ day. At about 2pm I checked my emails, just expecting the usual junk mail, maybe someone tagged me in something on facebook, or some company offering me 99% off deals. And there appeared an email from the CIN SW. Yes it was a Sunday. The email basically asked me if I could update her on an appointment I took Katrina to, as she was completing the core assessment on Katrina before they closed the case. Erm......hold on......CLOSE THE CASE? So I emailed back, just clarifying what she was saying and yes, they were closing our case. All 4 children's cases. So all that 'we're transferring Rowan to a more suitable team' stuff was complete crap. When I asked how long until the case was closed I was told 10 days. We had a meeting between that Sunday and the following Thursday and she was going to say something then with her manager there. So actually they were only going to give us 7 days notice. Once again, no room for discussion nothing. So, I had lots of questions. Here were my questions with the answers I was given.....<br />
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1. What is happening to Rowan's care package as SS are paying 20% of it, how can they be paying a package for a child who has no open SS case, and if that's the case, who will be reviewing the package? (basically every 3 months two people come out to discuss the care packaged and decide if we need more, or less hours, and one person is from the NHS, and the other is a SW, as those are the two 'organisations' funding the package.)<br />
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Well, it's highly unusual, but someone, somewhere, somehow will be funding the package still. Don't worry. Oh and we have no idea who will be reviewing it, probably just any social worker. (Going to make decisions based on a child they know NOTHING about......going to be interesting!)<br />
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2. What is happening regarding the childminder we have for the older 3 children?<br />
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Well, that will no longer be funded as you will no longer have an open case to SS.....(This is where I lost my rag, and responded with 'How the hell can you assess that I need a childminder, fund it, then take it away with no warning, all along you've bleated on about how my children need stability, and then remove one of the most STABLE situations they have right now. One adult they trust that's not a parent. And what is meant to be happen now, I have made commitments (OU) based on that childminders support).....and that is was NEVER going to be long term (although we were also never told otherwise). They said they were not saying that we did not need or benefit from a childminder, but they wouldn't be funding it. So we need to fund it ourselves, and any extra childcare we need will have to be bought in by ourselves.<br />
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3. Ok, so what if I can't afford the childminder, that you as a services assessed that I needed a year ago, and despite the fact that the situation has not changed, you now decide no longer needs to happen?<br />
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Um.....well......tough (Ok, maybe they didn't say the word 'tough' but that's what I heard).<br />
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4. Why are you closing the case? (Ok I guess most people would have this as question one, but I was MAD)<br />
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There are no child protection issues, the children are well looked after, there are no concerns about them, we are good parents. Therefore we do not meet their criteria as they now only deal with children on a child protection plan, or children they are removing from their parents. So.....if you are a good parent, sacrificing your own health, your own sanity, your own life, then you don't need (or deserve) any help looking after your children in order to be able to look after yourself a little bit.<br />
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5. You say there have been big changes in our circumstances, can you name some?<br />
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Lots of things have changed. (Like what?) Lots of things (Such as?)....well.....um.....<br />
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6. We have a child in need plan, not all of the 'actions' on that plan have been completed, yet you are closing the case? How?<br />
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All the actions are completed. (So what about the ones about seeking help, for me to explain self harm to my children?) There were no resources available, so there is nothing we can do. (That's a rubbish excuse, that I have been fobbed off with for 6 years now, and you lot told me you would help me with it, and now it's not possible!?)<br />
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7. So when do we actually lose the childminder?<br />
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Well we will pay her until the end of August. Then it's up to you whether you continue to pay her or not.<br />
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8. So, I assumed the help that was promised for me to do my DBT course is also revoked?<br />
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There were never any promises made. (This is where my mental health worker chips in 'erm, yes you did, you asked hours, what the commitment was like, what <span style="background-color: yellow;">CMHT </span>(community mental health team) were asking for') and their response, was 'we understood the commitment, but we never said we would help with childcare. There is nothing documented to say that we said we would help' (equally, when discussing the situation, not once did you say you were NOT going to help)<br />
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So, whilst all this discussion was going on, I started asking other questions, such as, what happens now then. I had given up fighting. What was the point? No one was listening to me. No one was going to listen to me. And I just started getting upset. I worked my arse off of my kids. I tried so hard to help myself, I agreed to therapy that I'd said no to for years, I started an OU course, and it feels like I have been penalised. We were in a meeting with all these questions. I started to raise my voice. The SW told me she'd 'sort this' and 'phone them' and 'do this' and 'do that'. I was seeing red. So I told her to 'stop feeding the room bullshit, you are leaving in a week's time, these things have been outstanding for over a year and now magically you are going to solve all the problems in a week, bollocks'. The SW manager pipes up, and tells me to calm down, and that SS closing is a good thing. (Clearly I don't see it that way). Basically at the end of the meeting it was agreed that we would step down to a team called the 'core offer team'. They have service coordinators that help sort out messes likes ours. We were under that team before, until we were moved to the DCT. They are not social workers, but we felt so supported under them. They do not have a budget though, so they can not pay for childcare. I felt like I got the consolation prize. But I had to admit defeat. I wasn't going to win. <br />
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My mental health worker tried. He said things in that meeting that I really didn't want people to know. And although I know some things are my fault, because, although I will sit here, on the Internet, and admit to the world that I see and hear things that aren't real, there are thing that I do not share with anyone, and only share with my mental health worker at a push. I have real issues with trust, especially with professionals, and this is exactly why. They make promises, then say they didn't make them at all. Making me feel like I made it all up in my head. I came out that meeting feeling awful. Some of the way that I have been feeling recently was made perfectly clear, the amount of 'risk' I present to myself was also made clear, and yet, despite SS stating on numerous times that my 'mental health is just as important as the children's health' they basically told me at the meeting that they don't care. My ever decreasing mental health state, has nothing to do with them, because they are children's services. My mental health state is to be sorted by the community mental health team. So all this rubbish that is told to families about 'working together' and 'looking at the whole family' is a load of rubbish.<br />
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Leaving that meeting with the consolation prize, I tried to move my focus to looking at the core offer team, and hoping they will be able to help me feel more secure. A couple of days after the meeting, the SW emailed me again. We do not fit the Core Offer Team criteria either. They are refusing to offer us a service. I felt like I'd been repeatedly kicked in the stomach. I am trying to help my children as much as I can. I do the work of several professionals, paid in love and smiles and cuddles by the children, and I do not deserve to have an identity of my own it would seem. Basically my mental health worker told everyone in the room that I have a 'suicide plan, with intent'. Now, it's not an attention seeking plea, it wasn't a 'last ditch attempt' to get them to keep the case open. There are lots of the things going on for me that are causing huge problems for me. I have had a really big downward spiral with my mood in the last few weeks. And this whole situation made me feel completely worthless. Like I meant nothing to anyone except my children.<br />
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So, where does that leave us now? With a CAF. Do I have any hope that this will work out OK in the end? No. Do I have any choice but to just let it happen? No. I had a CAF when I just had Katrina, single parent, mental health issue. No physical health issues at all. And there wasn't much that could be done for us then (before all the budget cuts).<br />
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Right now, I have given up fighting. I have given up arguing with services over what I want and/or need for my children, and for me. I have given up fighting to keep my mood stable. It's through the floor and below. I have given up fighting my way through each day. I let chaos happen around me. I don't chase things, I don't argue, I don't question things. That requires energy that I just don't have. Maybe not fighting, in time, will make things better. If I'm not so hung up on being combative with everyone, maybe, even though nothing will be sorted, I won't be so stressed. I attend appointments, but with no 'everything is ok' face. I shrug like I can't be arsed, I am physically in the room, what more do they want? Services are not there to help out struggling parents, who are saving the government thousands every year by doing the job of therapists, nurses, PAs, doctors, taxis, educators every single day, trying to enable our children to reach their full potential. Don't ask for help if you need it. The answer will be no anyway.<br />
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Since I originally type this out, my mood has further deteriorated. I have shut down. I don't want to be around people, I don't want to join in idle chit chat. I do the bare minimum to get through the day. Right now we are in limbo, no social work team, no caf, no core assessments completed. No hope of Rowan starting nursery in September. I don't want to reply to texts, or emails or phone calls. I don't want to bring anyone else's mood down. Like I said I do the bare minimum. I had to take Rowan to the hospital today to get more antibiotic as the poor little dude is in pain constantly and is having issues with a recurring rash, and losing weight etc. I don't want to be so miserable, but I can't change it, if I could I would. I wouldn't even bite your head off if you insulted me or my children. <br />
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It has also transpired, that this whole situation may have come about, because Rowan has no diagnosis, and therefore fits no box. Therefore SS don't know what to do with us, what help we need, or where to send us for advice/support. So they close the case because they have 1000s more that they do know what to do with. Obviously that's not official, but it's the general feeling a lot of our team have, and a lot of people I have spoken to.<br />
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So for now, I am existing, not living.</div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com2tag:blogger.com,1999:blog-6167142684357502205.post-60803961114582919192012-07-14T23:25:00.002+01:002012-08-11T22:35:31.998+01:00Postive Post.<div style="text-align: justify;">
I have noticed that a lot of my posts appear to have a little bit of a negative twist to them. I don't mean to do that, but our life is full of bittersweet situations. Also, I am not a naturally positive person. Experience has taught me that nothing is truly positive, and I handle life a lot better if I can see the negatives, and predict them, and then they don't hurt so much. I am what would be known as a pessimistic person, and I'm comfortable with that most of the time.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu9SbidpjiyxETYMkMQOor3np3KE8wIQYqCN_BumieVLZL5t-VasEwZhW8RtbYYnU_EYNhw_KQAiG9w1YgC3Wvtxq9xjfDtWQVBmOX3FSU5nzK9kR-nM5VWzY00xHigujQIHmZ6iNOH3Y/s1600/555757_10150963031658113_1601008243_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgu9SbidpjiyxETYMkMQOor3np3KE8wIQYqCN_BumieVLZL5t-VasEwZhW8RtbYYnU_EYNhw_KQAiG9w1YgC3Wvtxq9xjfDtWQVBmOX3FSU5nzK9kR-nM5VWzY00xHigujQIHmZ6iNOH3Y/s320/555757_10150963031658113_1601008243_n.jpg" width="320" /></a></div>
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I have decided to try and have as positive post as I can. Without too much medical stuff in it. Showing the world that while my family is so amazingly different to so many other families, and certainly local families, we are also very much the same, we just have to approach life differently sometimes, and think a little harder, prepare a little longer.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGTFdnXdZc5btcoCwxNGpd5UNx9RMvBAKm68xuLyJVIfXCwtNCDxV1kIu2lf4jitTDiPPbENCsZUV57Oqkijlop5xFKysrcvd9notHE322WG7I-LlFo-LnbKYjuNYC6G2ZdBKtY3nyU8U/s1600/295231_3813366544485_1932868473_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGTFdnXdZc5btcoCwxNGpd5UNx9RMvBAKm68xuLyJVIfXCwtNCDxV1kIu2lf4jitTDiPPbENCsZUV57Oqkijlop5xFKysrcvd9notHE322WG7I-LlFo-LnbKYjuNYC6G2ZdBKtY3nyU8U/s320/295231_3813366544485_1932868473_n.jpg" width="320" /></a>Rowan is a 'pal' of a charity called 'Post Pals'. If you want to read about this charity then go here: <a href="http://www.postpals.co.uk/"><strong><span style="color: blue;">Post Pals</span></strong></a> basically this is a charity that sends letters, cards, postcards and sometimes little gifts to the children who are 'pals' and their siblings. It's a fantastic charity, and puts smiles on the children's faces on the darkest of days, often created by the cost of a postage stamp, and a thought. Sometimes all these children need to know is that someone cares, that someone has spent a few minutes that day thinking of them. Rowan has only been a pal since just before Christmas and LOVES his post. As do the other children, especially when Rowan is in hospital, or has not been too well demanding more of our time than usual. This year we went to our first every 'Post Pals Party'. This is an annual event, where all the volunteers who write to the children throughout the year, and all the 'pals' and people who are interested, or support post pals, all get together and have a fun day. The people who write to the children get to know the children a little better, you get to say hi, and thank you. You put names to faces. So this year we went for the first time ever. I took Cameron and Rowan with me. They had an absolutely amazing time. Every single person at that party had something they could have moaned about. It could have been one of the most negative atmospheres ever. And yet, every single child and every single adult was smiling. (Some, including myself were freaking out on the inside however). Every single child had fun. It was a place where no one cared about your difference. No one stared, no pointed, no one had any negative comments to make. It was one of those events that I will never ever forget. As a parent of a 'pal' it was rather odd, all the people who write to Rowan, know what he looks like. There is a photo on his page : <a href="http://www.postpals.co.uk/pals/Rowan+S"><strong><span style="color: blue;">Rowan's Pal Page</span></strong></a> (please look through the pals, choose one, and write a letter, or a note, or just write 'Thinking of you today' in a card, how about a list of jokes, or that story about your pet, use your imagination!!) However I didn't know who ANYONE was. So everyone was there 'Hello Rowan' 'Hi Rowan' and I'm stood there just smiling like a Cheshire cat. I told a lie, I did know a couple of the other 'pals' and their families, and so it was a nice time to catch up with them, that wasn't in a hospital setting. It was also good for Rowan to see his friends outside of a hospital for the first time ever. And it was good to confirm to Rowan that boys have tubies too. (He has only ever met girls with the same tubes and lines as him). </div>
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There were lots of things going on at the party. From a HUGE inflatable slide, that I think made a lot of parents hearts skip a beat as their child hurtled down this slide, with a squeal and smiling from ear to ear, and I think a lot of adults actually went on the slide. I will raise my hand and say when we got there, way before most people turned up, I went down this huge slide with Rowan. He wanted to go on it. I was determined to let him go on it. So we climbed up, I sat him on my lap, I made sure all his tubes etc were safe, and he absolutely LOVED it. I think Cameron spent most of the party on that slide! There was a bouncy castle, and a ball pit, a Peppa Pig Treasure Hunt, a buffet, face painting, and a raffle where the children just kept on winning, and kept on smiling. I kept noticing how many people were smiling. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhatSSreAQ4fF5rdc95BFFErnmNpnUGlT0z_yiOH0v1hKVdCJXe4j1uSRTvg-lBS1Y_JdPkU8eEGlGIG_r7HvHe2M_BlMnUjz_WtJO1MxMPq_L1Etw9YqkRTDTUiPLkX8-9NezvB-o79Yk/s1600/563435_10150963033163113_236735305_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhatSSreAQ4fF5rdc95BFFErnmNpnUGlT0z_yiOH0v1hKVdCJXe4j1uSRTvg-lBS1Y_JdPkU8eEGlGIG_r7HvHe2M_BlMnUjz_WtJO1MxMPq_L1Etw9YqkRTDTUiPLkX8-9NezvB-o79Yk/s320/563435_10150963033163113_236735305_n.jpg" width="239" /></a>The other thing that happened at the Post Pals Party, was something that I will remember forever and then some. Singing Hands were at the Post Pals party. Who are Singing Hands? Pardon? You don't know who Singing Hands are? You haven't lived. Singing Hands are a group of people who use singing and signing together. If you don't have a small child, or a child with additional needs you just won't understand how amazing they are. For us, there are three reasons we (and Rowan) love Singing Hands (if you want their website it's <a href="http://www.singinghands.co.uk/"><strong><span style="color: blue;">Singing Hands</span></strong></a> ). When Rowan was in his 8 month stay at GOSH, stuck in his cot, I spoke to one of the other Mum's who did signing with her daughter, and we borrowed these DVDs from them, they were Singing Hands DVDs. I watched them with Rowan, and he started to sign. I honestly believe those DVDs, and those two ladies, have a massive part to play in Rowan's life. If it wasn't for the signing, (which is always used with the words) he wouldn't be talking today. He still uses his signs if what he is saying isn't too clear, or if he's not comfortable in a situation he sometimes won't talk, but he will sign. It gave us something positive to focus on in such a negative situation. Singing Hands used to go to the cubicle of the little girl who we borrowed the DVDs from to do a 'sing and sign' session. One of the first times Rowan bottom shuffled, it was to get to the cubicle to go and see. He didn't go in, he didn't make his presence known, he just sat in the middle of the corridor and watched. When he was well enough, we started taking him to the Activity Centre at GOSH on a Tuesday. This was the ONLY thing that was focused on Rowan being Rowan, not Rowan being poorly. It was often the only time he would leave the ward, a change of scenery for him. I started to plan my week around that trip to the activity centre. It was a time that Rowan and I bonded over. It gave us things to praise and celebrate, the new signs he was doing, and he picked them up so quickly! </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_KQRBbEFykHT5ffWS3_jyn_DgSzCjQIptwx7vXpFiXFWJZEKwxZtAVbCoSwXy4qTuMxNFs2nan3sbnpslvhyphenhyphen8N7IeJq6AwJGUeGmigWPJaqW6bvHbdBUY9Dkx7bOpBNGzlfjMdKWNFIs/s1600/558295_10151264590069816_1361439510_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_KQRBbEFykHT5ffWS3_jyn_DgSzCjQIptwx7vXpFiXFWJZEKwxZtAVbCoSwXy4qTuMxNFs2nan3sbnpslvhyphenhyphen8N7IeJq6AwJGUeGmigWPJaqW6bvHbdBUY9Dkx7bOpBNGzlfjMdKWNFIs/s320/558295_10151264590069816_1361439510_n.jpg" width="240" /></a>When we came home from hospital, Rowan used to ask for his 'hands' all the time. We watched all the songs on you tube that had singing hands on or in them. He was hooked. It became a bedtime ritual. Needless to say we bought him the DVDs, so every night, Tracy and Suzanne are in Rowan's bedroom, singing and signing. Sometimes it's at bedtime, sometimes its at 2am when he can't sleep. Singing Hands offers Rowan the distraction when his pain is bad. In fact as I type this I am aware that one of the DVDs is in the CD ROM drive of my laptop. Still in there from last weeks GOSH stay. So Singing Hands were at the party. All the children were amazing. Rowan.....shy, quiet, selective mute, anxious Rowan, suddenly evolved into confident, lets get stuck in, trying to sing and sign the songs he knows so well, smiling. It honestly made me cry. And for Cameron, also usually a shy and quiet child, he was the showman. Boogieing away, singing, signing, they have been as much a part of his life, as Rowan's and mine. It truly was nothing but positivity. So much so, during Rowan's GOSH stay, I took him, on Tuesday, to the activity centre, to see 'Singing Hands'. Once again I scheduled it into his week, and he was even more involved in his signing. You may think I am being a bit over the top. But you have no idea how much a tiny thing like that means to you in a situation that is nothing but negative. And I know a lot of parents in a similar situation feel the same.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLUyupanRrdsnU9Ms7SnXXDUNiyb3Vjlcpjl_PMf9s2WOd_d0-a2WmXwnOcgb2MYAUwpUKsW4PJ5CyvlZbLSGjMzFWYwm1jNZrZMrvWB6VL1dJ6CuLg4eWj9XOdr5AodccqGjMZTeP__M/s1600/313903_10150992910838113_1030857224_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgLUyupanRrdsnU9Ms7SnXXDUNiyb3Vjlcpjl_PMf9s2WOd_d0-a2WmXwnOcgb2MYAUwpUKsW4PJ5CyvlZbLSGjMzFWYwm1jNZrZMrvWB6VL1dJ6CuLg4eWj9XOdr5AodccqGjMZTeP__M/s320/313903_10150992910838113_1030857224_n.jpg" width="239" /></a>Rowan may have a lot of differences to the 'average' child. But he does the same things as other children too. He has just started to do pretend play. And he thoroughly enjoys playing with all kinds of pretend play toys. From toy kitchens, to baking, hoovering, to happyland. Amongst all the medical stuff, he does lead a fairly average life as a 3 year old. It may take 30 minutes of medical care things before he can go to play, rather than spontaneously deciding to play, but he does still get to play. And he plays with his brothers and sister. And some of the time, they even manage to play together without scratching /biting /smacking /shouting /squealing /crying.</div>
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And some days he doesn't get dressed until 11am at the weekend, just like everyone else :o)</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz5Y_7bCzGzDYQgzUA55HxhaZ0bHUQd1SnzpECctE5N1OpCnXWvv0SGga9MaxDHzPTvRN2nhrHcpCjWpnuCn_rIzY6HgKaXtW_F7oCre_MsPqTi4PJKf1rwqE1je_cFoUteNP7flKMLYw/s1600/425561_10150963033703113_182744561_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiz5Y_7bCzGzDYQgzUA55HxhaZ0bHUQd1SnzpECctE5N1OpCnXWvv0SGga9MaxDHzPTvRN2nhrHcpCjWpnuCn_rIzY6HgKaXtW_F7oCre_MsPqTi4PJKf1rwqE1je_cFoUteNP7flKMLYw/s320/425561_10150963033703113_182744561_n.jpg" width="239" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRTYHxwrNwNo4Pr693RPMctJtgojvweJTrZp4nUp5_TTtoNGqDlA_pHkPE68xYDl776uYue8SMab9sUC0rgyXRuBUQg8jSibuxogU6iu0SdVIqcm3k58Bk1ztwP-xuDhQQ0eR6sciu4G4/s1600/552986_10150903497258113_2068221572_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRTYHxwrNwNo4Pr693RPMctJtgojvweJTrZp4nUp5_TTtoNGqDlA_pHkPE68xYDl776uYue8SMab9sUC0rgyXRuBUQg8jSibuxogU6iu0SdVIqcm3k58Bk1ztwP-xuDhQQ0eR6sciu4G4/s320/552986_10150903497258113_2068221572_n.jpg" width="239" /></a>This is one of Rowan's favourite games. The 'phone' in our house we have lots of kinds of phones. Rowan likes pretending all kinds of things are phones. From an actual toy phone, to a book, to his hand, and to his foot. This 'foot phone' is currently a favourite. And it makes international calls to his 'Aunty Vowry' all the way in the USA, as well as to Daddy who is sitting right next to him. He does absolutely love telephones. Talking of 'Aunty Vowry', this is someone else who makes Rowan smile. Rowan and me both. Valerie is not only an amazing lady, and an amazing Mom, and an amazing nurse, she is also an amazingly creative person, who puts smiles on hundreds (maybe even thousands!!) of children's faces who have feeding tubes, and other medical devices. Valerie makes what she calls Belly Buttons. Seen as I am having a bit of a 'linking' blog post, I will link you to her website too, where you will find Rowan and lots of other gorgeous children, with gorgeous smiles. <a href="http://www.bellybuttonsandbelts.com/"><span style="color: blue;"><strong>Belly Buttons</strong></span></a> Belly buttons are cloth pads, that go around feeding tubes. The boring bit is that they collect gunk that leaks out, and they help with granulation (extra skin). They help stop little (and big!!) people's skin from getting irritated and sore and just generally not feeling happy. Valerie makes these sites happy. It also makes these feeding tubes fun. It makes them less medical. Lots of children (including Rowan) thoroughly enjoy 'choosing' a pad (or two in our case) every day. It gives them a little bit of control. It teaches them that it's not so scary. It makes them proud of their tubes, not terrified. Rowan for sure has gone from hiding his buttons away, to proudly displaying them to anyone who wants to see them. Valerie also makes 'Belly Belts' to protect tubes, and hold the feeding tubes. And what's even better, is that these aren't about making money for Valerie. She genuinely loves these kids, and loves making them happy, and loves seeing the pictures. It is a labour (or is that labor) of love for Valerie. We Love Aunty Vowry.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilIXLuzv7th9VHL3QviKeMopOvVlJX8tWQd0yU8C3KVNxR7gba92aBNTlUgjLQzVPV_FNCLsrhYi2VAoekZtUA49_O97TdpPPwaRaGLkXySF_XIA91llAiYXbQwvnU7J1K3ePyUW-OSO8/s1600/529200_10150957102943113_12681834_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilIXLuzv7th9VHL3QviKeMopOvVlJX8tWQd0yU8C3KVNxR7gba92aBNTlUgjLQzVPV_FNCLsrhYi2VAoekZtUA49_O97TdpPPwaRaGLkXySF_XIA91llAiYXbQwvnU7J1K3ePyUW-OSO8/s320/529200_10150957102943113_12681834_n.jpg" width="320" /></a></div>
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Although this is a fairly bad photo (blame the photographer) it is also one the most amazing photos I have ever taken. The meaning behind this photo is more important than the photo itself. This is Ayden, riding his little brother around the 'track' at his nursery. Rowan went to nursery for an hour, a taster, a settling in period, evidence gathering type visit. This is the nursery that Ayden already attends, and we can't wait for Rowan to attend to. Ayden has done amazing things at nursery, despite the odds being stacked against him, and we're sure Rowan will do the same. This is the first time, that Ayden has really been able to be a 'proper' big brother. I know that sounds ridiculous, but he has never been able to do anything with Rowan. Ayden, like every 4 year old is clumsy and heavy handed and we spend the whole time telling to 'be careful' around Rowan, that it's really only been the last few months they've really properly interacted. Most of that interaction is fighting and shouting at each other, but sometimes you get little glimmers of the brother love I want my boys to have. Ayden was massively protective of Rowan at nursery 'mind, it's my bruvva' as Rowan is trying to manoeuvre his way through the room, or the garden, 'Rowan look at this' it was genuinely all positive interactions. They sat nicely together at the computer, and played TOGETHER. It really makes me appreciate how much they have BOTH been through the last 3 years, and that actually, even though they spent the best part of 2 years apart, their bond runs much deeper than we ever realised. It made me feel really proud of my boys. Rowan climbed on the back of this bike (with Ayden's help) and sat down. Ayden then sat on the front. And he pedalled Rowan around the track several times. They were both so happy. They did something together that didn't need an adult. Rowan relied on Ayden, Ayden was the big brother. And he absolutely loved it. When it was time to go, I left Ayden at nursery, and went to take Rowan home, and Ayden was absolutely heartbroken. There was me, thinking it was me he didn't want to leave, and it was Rowan. He didn't want Rowan to go home. The bottom lip came out and he was genuinely upset. It actually made me cry. Through all the fighting, all the crap they have dealt with, they absolutely love each other to pieces. There was not a hint of anything negative in Ayden when we left him. I am so proud of them.</div>
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Some of you may know that we recently got a dog. As if 4 children and 2 cats weren't enough. We have a dog, yes we are nuts (I have proof on a piece of paper!). His name is Luca, and he is 15 months old. He is a Husky. He is absolutely gorgeous. Obviously, being a dog, there is a certain level of responsibility. Katrina has taken on the job of 'Luca feeder'. She feeds him twice a day, and it is one of her 'jobs'. She seems to really it. Luca, although technically still a puppy, (a rather LARGE puppy) is very well behaved. Sitting down, he stands just a little bit taller than Rowan. We were originally a little wary of him around Rowan and thought we may need to do a little bit of rescuing Rowan, where Luca knocked him over, or constantly licked his face, or something else. However, Luca has been absolutely amazing with Rowan, and in fact all the children. Ayden is not exactly gentle. He hugs Luca so tight sometimes I think his eyes are going to pop out. Ayden has fallen on him, stood on him, he's leaned against him. He winds him up something chronic. And Luca just takes it all in his stride. I'm not going to say he's the perfect dog, he hates being left on his own and howls (sorry neighbours) and he pulls a lot on the lead, but we're working on it! Generally though, it was one of the best decisions we ever made, and I don't for one minute regret it (the cats however may disagree, we're working on them too). Obviously having a dog, means that he needs walking, regularly. It's given me an opportunity to escape. When I just want time on my own, the dog needs walking. It's given me an opportunity to explore our local area a little bit (and get lost, which I did last week, and had to use google maps to get me home!). It also gives us the opportunity to let Rowan experience things he hasn't really before. He loves picking 'Fowers' and giving them to everyone. Something so simple, but he hasn't ever really been around grass and outside spaces. He does like going out. He likes taking Luca for a walk. Luca has increased Cameron's confidence too. I think he likes being about to talk to his friends about his dog, rather than his poorly brother. When we go out, people tend to comment more on our 'gorgeous dog' rather than our 'disabled son'. Luca brings a lot of joy into our house. And a lot of adventure too.</div>
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</a>I'm just going to post a series of pictures now. More of Rowan. From laying with Daddy on the floor with his 'massager' that he was given by someone from 'Post Pals', a picture of the smile on his face when he received his new Bizzies, again, from someone through 'Post Pals' (notice how this charity really makes Rowan smile!?) to Rowan falling asleep on Daddy's lap, and picking the fluff out from between his toes. All the medical things that go on with Rowan, and yet, underneath it all, or on top of it all, is a 3 year old little boy, just trying to live his life, the same as you and I, he just has to go about his a little differently. His rules are slightly different. And while you are teaching your child to not climb on things, I'm teaching mine how to safely climb on things to reach them. While you're teaching your child to not touch things, and not eat with their fingers, I am teaching mine to do the complete opposite! We all live life our own way. There is no right way. As long as it contains a smile, then it's your way.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOmUXedzuVHrR0xGAWsl-aPQ9QQPUXtMBdDZkeCqub7QVEVx3tc6c6Yoy0WEy9BqVF3c5f46Ryff9SKKPJE3kNLNBB4vD8fbuTJxwEYwv9iQVBM9dKPq4Rg8wTnG2M5iTF3EhSAwjYnn4/s1600/548186_10150992909338113_559653867_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOmUXedzuVHrR0xGAWsl-aPQ9QQPUXtMBdDZkeCqub7QVEVx3tc6c6Yoy0WEy9BqVF3c5f46Ryff9SKKPJE3kNLNBB4vD8fbuTJxwEYwv9iQVBM9dKPq4Rg8wTnG2M5iTF3EhSAwjYnn4/s320/548186_10150992909338113_559653867_n.jpg" width="320" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpQBoaAFCqDLelMd8R2Wz1dPkbXJLfV_jx-2OohYLswZmXVGgQZizGp0QQEDt2cEASSqj0ydbRkXZKQgqonBiWalt3kVl_mpWbUdKyYMMzSYDTHhseVi-R6vcV5RJH85smXN22IG_KWn8/s1600/394704_10150992910653113_976824881_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpQBoaAFCqDLelMd8R2Wz1dPkbXJLfV_jx-2OohYLswZmXVGgQZizGp0QQEDt2cEASSqj0ydbRkXZKQgqonBiWalt3kVl_mpWbUdKyYMMzSYDTHhseVi-R6vcV5RJH85smXN22IG_KWn8/s320/394704_10150992910653113_976824881_n.jpg" width="320" /></a> Rowan picking out his toe fluff (above) Rowan realising he has 'big boy bizzies' thanks to Denise. (left)</div>
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Falling asleep while having a 'Daddy cuggle'</div>
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'Look Luca, Fowers'<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja2ZbuhdF1bQ5qEkeQTiu2JO5eJggDvWVUBNLjwe67j1P1wP9qJUZFUitJJn7TIHag_tvGwMkE4klPN4WbnULNbgxu4E0h2osa9DSt_L_9puAV1jY7b5uj2xnh9rvQsDHp2XClL3tTejE/s1600/578651_10150982501328113_1747082583_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEja2ZbuhdF1bQ5qEkeQTiu2JO5eJggDvWVUBNLjwe67j1P1wP9qJUZFUitJJn7TIHag_tvGwMkE4klPN4WbnULNbgxu4E0h2osa9DSt_L_9puAV1jY7b5uj2xnh9rvQsDHp2XClL3tTejE/s320/578651_10150982501328113_1747082583_n.jpg" width="320" /></a></div>
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Rowan's back is hurting, Daddy is fixing it with his massager, thanks to Ally.</div>
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</script>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-8293636541090195912012-07-14T20:34:00.000+01:002012-08-11T22:36:07.936+01:00Days 4 and 5.....<div style="text-align: justify;">
In the madness I completely forgot that I was updating the blog. So, I will do a kind of 'catch up'.</div>
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<strong><u>Day 4</u></strong></div>
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As suspected I didn't really get much sleep. Between having to adjust rates of feeds and swapping them over and dealing with bleeping pumps, Rowan decided that 2am was a good time to be awake. He then didn't fall back to sleep until 430am. After an hour and a half of singing hands on my laptop. Part of me was miffed, I just wanted to sleep, but he was so gorgeous signing along and mouthing the words that i just couldn't be cross. 430am he fell asleep, and there was no point me going back to sleep. So I just laid there for an hour or so. At 530am I got up and showered and sorted myself out. Packed up my room, and left, to arrive on the ward for 7am.</div>
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Rowan is so good with not being allowed to eat, he seemed to understand. At 10am, we were called, and we went across to the new theatres in the new GOSH building. It was all rather posh, although they weren't ready for us (even though they called to say they were ready) and made us stand in the corridoor. Now I'm not moaning, but if you are going to make people wait outside in the corridoor for 15 minutes, you really need to get some chairs in the hallway!! Anyway, there was a bit of a mess, as the anaesthetist and the consultant weren't told that Rowan was allergic to chlorhexadine. They had been told most tapes, and we'd cleared some that were 'ok' luckily they double checked with me first as they would usually use chlorhexadine for cleaning before and after the liver biopsy.</div>
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He went to sleep and all was ok. I did a 'starbucks' run and got myself a coffee and grabbed a sandwich. He was due to come back at about 12ish and I wasn't sure if I would get out for lunch or not after Rowan was back, sometimes he's clingy, sometimes he sleeps, sometimes he just screams blue murder.</div>
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NO ONE had told anyone that Rowan's surgery had been moved. All of a sudden, there are lots of people running around like headless chicken's. Rowan's gastrostomy site had some 'extra skin' (known as granulation) around his tube that wouldn't go away no matter what we did to it. So they can do a special treatment called silver nitrate and it basically burns the skin away. Seen as Rowan was having an anaesthetic, we had agreed with the gastro team that they would burn it off while changing the peg to a button.</div>
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For those of you who don't know the difference......this is a peg tube (the one with the white triangle on)</div>
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And this is a button......</div>
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Anyway, there was no silver nitrate in theatre. So the gastro nurse and the gastro doctor are LITERALLY running around to find some. They had though they had a couple more hours to sort it out as originally he was going to theatre at 130pm. Once they had run around, and got to theatre, put scrubs on, it wasn't needed anyway. Where they had to stretch the stoma (hole) to get a 'fatter' tube (the button is fatter) in, the granulation (extra skin) was now flat. The Gastro nurse came to tell me what was going on before I got to collect him. She didn't want me panicking. Basically there was a LOT of blood and lots of his tubes and buttons were covered in blood, as well as the liver biopsy site. While she was telling me what was going on they phoned to say he was ready to be collected.</div>
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One of the things you need to do with a liver biopsy is make sure they lay as still as possible afterwards to prevent further bleeding. The gastro nurse said no way was he ready. It had only been 10 minutes since they were finishing off the liver biopsy. She told me to wait as they had obviously woken him up too quickly wanting to go for their lunch. It takes a while for the nurses to co ordinate, and get all the emergency equipment sorted to go and collect him.</div>
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When we arrive, we have no idea where Rowan is. They failed to tell people that the new theatres don't have a recovery area, they move the children across the hall to the 'old' building. So after a hunt, I could hear him screaming at the top of his voice. Far from calm. He was not a happy bunny. As soon as I picked him up he was OK, and calmed down, and he started demanding the cannula was out. He is very funny about cannulas. He hates them. Normally, they don't put them in until he's asleep and we are usually lucky in that they take it out before they wake him up. This time they left it in. Why I will never know. The nurse in recovery was very reluctant to take it out for him. I explained (above screeching) that he had IV access for emergencies, he has a central line, if they don't take it out safely he will just pull it out. She took it out for him. He was very disorientated and I was very worried. He kept saying 'I need a hospital, I need a hospital, ow ow, I need a hospital' it was very strange and he's not normally like that. He then wanted all his clothes off. He was not a happy boy. Rowan is normally very self conscious about having his top off. Stripped naked and screaming we took Rowan back to his bed. He just continued to scream.</div>
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The gastro nurse came in and was basically saying he was like this because they woke him up too quickly she's seen it so many times before from working on a surgical ward. He wasn't at all with it, and he was a horrible colour and he just wasn't right. He then kept repeatedly saying 'I need a nurse, I need a nurse, I need a nurse'. It took a good hour to calm him down. Whilst screaming the endocrine nurse pops her head round the door to find out what's bothering him. 'He's post op' she was told. 'Pardon??' 'he's post op'........then there was the look......'He wasn't due to go down until 130 this afternoon' 'well it's been done and he's back' 'did they take the liver biopsy samples' 'as far as I am aware' 'um, no that can't be right, one of those samples needs to go into silver nitrate, and we have that already, and we are supposed to do that, which is why he was booked for 130pm so one of us is free'.......I just looked at her horrified. She RAN to the consultant and then RAN to theatre and was chasing these biopsies around. Luckily they were saved, and are being tested as I type.</div>
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I managed to settle Rowan down and he looked like he was going to fall asleep. I grabbed the opportunity to quickly dash out to get myself a microwave meal for my tea so that after Rowan had fallen asleep I could actually eat. I was literally 20 minutes. When I got back, Rowan was on oxygen he was looking pretty awful, the nurse wasn't leaving him, he was on constant monitoring he looked very grey and very not right at all. He was on 5 litres of oxygen. I kind of stood in the doorway and just went........'what the hell? I can't leave you for 10 minutes can I!?' he had had a minor 'blip' while I was out. Silly silly boy. He was ok though and a couple of hours later he was back to normal.</div>
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At about 6pm, the gastro nurse came back to check all was ok, and she had a look at his button. It was gunky and manky and she said she'd come up in the morning to help me clean it before we went home as Rowan would still be a bit sore. Also, she came to tell me that Rowan's gastrostomy site (which had just had the button put in) and his jejunostomy site (the other button) were both infected. I knew they were, I could just tell. We had been putting an ointment on his site for 3 weeks and it was still there. And now he had grown another bug too. So we would have to start 2 high dose antibiotics to try and 'kick it' out of his system. </div>
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We kept him dosed up on pain relief and kept the oxygen on but near him while he slept as the amount of oxygen in his blood kept dropping slightly but it was fairly uneventful.</div>
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<strong><u>Day 5.....hometime...</u></strong></div>
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Rowan woke up demanding he go to the 'gym'. Had missed physio yesterday as he had his surgery. I really didn't think he was going to be that bothered, but he was practically begging me to go. I cleared it with the doctor, then i cleared it with the nurses and we went to the gym. He walked into the gym, I took his shoes off and he went 'bye mummy seeya in a bit, love ya'. I just stood there in shock and just said 'bye then dude, have fun' he went 'i do esercising' (exercising) and off I went. I went and packed all our things up to get ready to go home. He LOVED going to his gym by the end of the week. We'll have to see how he goes at home!</div>
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After I picked Rowan up from the gym and sorted him out with some lunch I enquired about transport home. As usual, there was a problem. The doctor was still waiting for microbiology to tell us which antibiotics Rowan needed to be on. And then they had to be ordered from pharmacy. Knowing what I know, I knew this was going to take AT LEAST 4 hours. Wasn't really what I had wanted to hear, but, that's the way it goes sometimes.</div>
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Last night, we reduced Rowan's TPN by half the volume. Just to see what he does with his weight. To see whether he will then make up extra calories with food, or whether he will lose weight or what. He had already lost 1lb in a week, and we're not really sure why, assuming it was the nil by mouth and lack of milk and food etc. Anyway, I was all up for them reducing the TPN. The aim was to get him off of TPN for one night a week. One night a week where we wouldn't have to be home by 630pm. One morning a week where I wouldn't wake up to bleeping pumps and have to get up regardless of whether rowan was still asleep or not. One night where I may actually be able to get a night out! One night where Lee and I may be able to get out together as we'd just need a babysitter trained up. Seemed like such a good idea!!</div>
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Friday morning we had problems, about 11 his blood sugar was 3.7. That's not too bad, but it's not ideal. I decided to take Rowan to his favourite place on Earth. The Disney store on Oxford Street. He had never been, but he LOVES the Disney store. I took all my emergency bits and bobs with me. When I arrived at the Disney store Rowan was quiet and withdrawn. As usual in a busy, unfamiliar place. I took him in the lift to go downstairs (he was so excited) and he whispered to me 'Mummy, I hypo' I checked his blood sugar and sure enough 3.2. Hypo. So I waited the alloted 10 minutes. And I asked him again, and he nodded that he was still hypo. 3.1. So I put milk into his new tube, and gave him a sugary gel (known as hypo-stop) and he perked up. </div>
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Got back to the hospital and the general feeling was that reducing the TPN wasn't going to work. Transport was booked for 4pm. We went downstairs to wait for the car. It was a little crazy, trying to work out what kind of car we'd need etc. Then it was stuck in London traffic, then it was ok, then it was stuck. I was getting a little edgy, knowing Rowan had already been hypo earlier in the day, and then as we edged closer and closer to needing to connect Rowan's TPN, I wasn't comfortable. Just as I was about to take Rowan back to the ward to put him on some dextrose the driver turned up. I had to make a decision, so decided to risk it. I made sure I had hypostop, and the BM kit, juice, food, eveything just incase. We should be ok. I kept telling myself it would be ok.</div>
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Someone remind me next time not to risk it!!! Silverstone was on. There was flooding everywhere. There were 3 accidents on the M1 between London and my house. The driver told me we'd be ok. Add an extra 30 minutes to the journey but we'd go on the A1(m) to avoid the traffic. WRONG. We didn't get too far into the journey before there was an accident. The driver was horrified. He knew we had to be home as soon as possible, and we were stuck. Absolutely stuck. Then my nightmare unfurled. Rowan was hypo. Treating a hypo in gridlocked traffic was hard work. Then his pain relief began to wear off too and there was nothing I could do. The seatbelt straps were sitting on his new tube and on his wound from the liver biopsy. I started to get upset because there was nothing I could do. The driver lost his rag, and decided we'd go through all the little roads, stay as parallel to the A1(m) as we could and just cross our fingers.</div>
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It was a very eventful journey home, I won't go into the gorey details but lets just say that next time I will not 'risk it'. I will think twice, and I will contact that TPN or those fluids. The driver was AMAZING. It's a shame I never did find out his name. His distraction methods were fantastic. Talking about the big warehouses with Rowan and they had a discussion about how there were space ships in there with 'green aliens' and sometimes 'purple aliens'. We made it home just before 8pm. It took almost 4 hours to get home. But we made it.</div>
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Now just to wait for the biopsy results. I'm not believing that these results will show anything. I am so used to 'normal' being the result I'm not sure how I'd react if it actually shows anything, and I'm not stressing or worrying about them. Been there, done that, and I've learnt from experience that constantly worrying about the 'what if's' is pointless, as so many times we draw a blank. Worrying about it changes nothing, it can not influence which way the results come back. I will just deal with whatever happens next. If anything.</div>
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<br /></div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com1tag:blogger.com,1999:blog-6167142684357502205.post-88137666924394681962012-07-05T08:56:00.001+01:002012-08-11T22:36:39.086+01:00Day 3.......of 5.This morning Rowan had physio and only cried for 10 minutes. He still didn't really do much physio but he's calming down. Which is a huge achievement. <br />
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After physio we went to the ward and made plans for tomorrow to keep Rowan as safe as possible. We had a chat with the Endocrine team about Rowan and we may need to increase his growth hormone dose as he's growing outwards but not really upwards, so looks fat bless him. We also talked about Ayden and where we are going with him, we are still waoting for an appointment to come through but Dr Hussain is going to try and sort things out for us. <br />
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Rowan had physio in the afternoon and took his cars to make his bridges in physio and, with only 5 minutes of screaming, he actually did some exercises :o) its a HUGE achievement for him. Physio is hard work but it will help him in the end. <br />
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Rowan and I went out for dinner, to McDs as he was so so good at physio. Unfortunately he didn't fall asleep until 9pm!! At 8pm I got a call to tell me that Rowan's surgery has been moved from the afternoon list to the morning list. So that meant no sleep for me basically. I need to turn his milk off at 230am and swap him to clear fluids, then at 530am turn that off, and then be on the ward for 7am to put him on fluids instead of TPN. Its going to be a long night!!MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-72515809153498418482012-07-03T20:48:00.001+01:002012-08-12T09:12:34.454+01:00Day 2.......of 5.So, we were in the patient hotel last night and neither of us got much sleep. I'm not sure why but it was so hot!!! I got up at 630am as we had to be on the ward by 8am. Showered sorted things out. When I came out of the shower, Rowan had a big grin on his face and told me 'i binished' (i finished). 'finished what Rowan?' 'Teepee' (TPN). He had disconnected his own TPN from his central line. This is incredibly dangerous for so many reasons, from a possible fatal line infection to a possible hypoglycaemic episode causing all kinds of complications not to mention the loss of precious calories! So chaos commenced and I arrived on the ward for blood tests to make sure he hasn't infected himself!! And an extremely stern talking to!<br />
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We had to be on the ward for 8am as we were having a lung vq scan. Well it didn't happen. There was a lot of technicalities that were causing problems for the last 8 months whoch is why this test is now 8 months late and today was no different. The gas that they use for the test didn't arrive. So the test couldn't be done. That was that. <br />
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There was a bit of a bed issue, Rowan needs a cubicle on the ward so jiggling patients around was necessary. They asked me if i was happy to stay in the patient hotel tonight and tomorrow night, save them a hassle, and meant I could come and go as i pleased. So thats where we are now. A little bit of a faff because I needed to connect hos tpn at the hotel and do bloods and then take the bloods straight back to the hospital, and then back again to bed. All a lot of messing about but its done.<br />
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Rowan isn't sleeping properly and so neither am I. He's not really doing is physio yet, we are still trying to get him to do as he's asked and not enter the gym screaming. So yesterday he screamed for 30 minutes. Today he screamed for 20 minutes. All I want is a plan and to know how bad this is, and how much realistically to expect from him. I don't want to push him to hard and make it worse. But I don't want to give in to him all the time either. I'm hoping that will happen soon ish. Maybe Friday. For now we just keep trying.<br />
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My mood is all over the place, rational, then irrational, I'm ok one minute and floods of tears the next. In control yet out of control at the same time. Trying to pretend its all ok when really its not! Lots to deal with. As usual. 3 days to go. That is all. This is how I manage hospital stays, I count down the days. 3 to go.MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-57716921561072678672012-07-02T19:59:00.001+01:002012-08-12T09:12:34.453+01:00Day 1.......of 5.I am going to do things a little differently this week. As many of you know I struggle with hospital stays and seen as that is where I am at the moment I wondering maybe blogging at the end of the day will relieve some of the thoughts and emotions that make me feel like my head will explode.<br />
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So today is day one. So far so good. We were collected on time and it took 2 hours. The driver didn't say a SINGLE word to me. Nothing. Was a very quiet journey by all accounts although reasoning with a 3 year old that a 'garbage fuck' and a 'fuck' were different. Of course he meant a garbage truck, and a truck, however as i tried to get him to call them 'lorry's' instead he thought i was offering him a 'lolly', and so he began a mini tantrum over a lolly, or lack of.<br />
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We arrived in one piece, managed to place our belongings in a 'luggage storage' area in the 'patient hotel' and dashed to the 'lagoon' which is the new hospital canteen at gosh. While i was impressed with the space and the difference compared to the old one, Rowan was fascinated with the 'mickey mouse club house' and the fact he can choose snippets of mickey mouse to watch on the tv, yes this is IN the canteen, sorry Lagoon.<br />
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Rowan attempted his first 'physio rehab' session today and it didn't quite go to plan. The session was for an hour, Rowan screamed for 30 minutes, then was cuddled for 30 minutes. He has learnt screaming gets him what he wants as he is so LOUD! Tomorrow we will try again however. Now that the physio team know its all noise and i'm happy for them to tell him to pack it in. <br />
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We then popped to the ward we will be on tomorrow, sorted out some emergency meds for me (easier to get it faxed over from my psych than to try and see a 'crisis team' in London psych). The gastro CNS also came to see us to swab Rowan's feeding tubes again as it would appear the infection is there, and the fucidin cream we are using may well be causing contact dermatitis. Anyone have a brick wall I can bang my head against? With the green output that is leaking from Rowan's sites he may also have a gut infection. We will have to wait and see when the results are back Thursday.<br />
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The plan for the week is at least one physio session every day. Metabolic review, Endocrine review, Gastro review, peg change, liver biopsy, lung vq scan.<br />
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Tomorrow at 9am is the lung vq scan. This I am in no way looking forward to. Whether i approach it with a positive mental attitude, or whether i approach it expecting it to be awful I haven't yet decided. There are pros and cons to both. We shall see how my mood takes me. One day at a time.<br />
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1 down, 4 to go. (oh and yes it is my birthday today, no i haven't done anything nice, and no i have nothin planned) <br />
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<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVY4XhfMkKpZwtCHVFwBqYerJhvhS5q8Nm6SuJ396TFxJh9Gn9-n0iNu_eG18lvLA3oSp4dj6IlRUgMCzaPqvzOftsmKwb17PbS3My9-aM3yezyswGwq53oBR18g9UeiXOJMyuqwfhGyE/s640/blogger-image-265460347.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVY4XhfMkKpZwtCHVFwBqYerJhvhS5q8Nm6SuJ396TFxJh9Gn9-n0iNu_eG18lvLA3oSp4dj6IlRUgMCzaPqvzOftsmKwb17PbS3My9-aM3yezyswGwq53oBR18g9UeiXOJMyuqwfhGyE/s640/blogger-image-265460347.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJS9pCHEFf9nj7Vy0zn6FsMNZFpqsFCJCTjqNqOpZVqitG2uZ8foc1nzYFXV3vvQenDn1DURbpY294qfjALqsaZte7N5zuXwvwMBM3U0ksrvh_2BaJMnZl1cBb5rsXPm2Nm01AIFuQYJA/s640/blogger-image--2009062853.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJS9pCHEFf9nj7Vy0zn6FsMNZFpqsFCJCTjqNqOpZVqitG2uZ8foc1nzYFXV3vvQenDn1DURbpY294qfjALqsaZte7N5zuXwvwMBM3U0ksrvh_2BaJMnZl1cBb5rsXPm2Nm01AIFuQYJA/s640/blogger-image--2009062853.jpg" /></a></div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-59717885262174325932012-06-29T21:36:00.000+01:002012-08-11T22:37:54.078+01:00Birthday Bug!<div style="text-align: justify;">
Monday was Bug's (also known as Cameron) Birthday. He is a huge 7!</div>
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7 years ago, I was 19, newly single (my husband had left me), and terrified. I dashed to hospital and out came Cameron. Only 3 and a half hours of labour. Cameron was a 7lb 8oz baby. The midwife wrapped him up in a blanket and handed him to me. Then she left the room to run me a bath. When my Step Dad came in to see 'the baby who had no name' he unwrapped him, and he noticed he had a 'deformed ear'. I didn't care, my baby was perfect in my eyes (although why the midwife didn't see it I don't know.) I had wanted to called 'the baby' Oliver right from the day I found out I was having a boy. His 'sperm donor' wanted to call him Tristan. So how did we get to Cameron? Well......</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCyV5EuWqlubio0hW-j4mjhEzH7IjNH9B_DHEtYfel-sym0HB6_QGueO__WurNyaVChfkGv3IE02_a590M9HJKWwZJ20D1MVOGATOAYVLNSeM3pqwSGaFLEfKa_6Fs2D7UchBwbUOEWP8/s1600/311_41358163112_1099_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCyV5EuWqlubio0hW-j4mjhEzH7IjNH9B_DHEtYfel-sym0HB6_QGueO__WurNyaVChfkGv3IE02_a590M9HJKWwZJ20D1MVOGATOAYVLNSeM3pqwSGaFLEfKa_6Fs2D7UchBwbUOEWP8/s320/311_41358163112_1099_n.jpg" width="240" /></a></div>
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When 'the baby' was born, he just didn't look like an 'Oliver'. I know it sounds stupid and some people will say to me how can he not LOOK like an Oliver, what does an Oliver look like. Well I don't know, but when I looked at him I just couldn't call him Oliver. So I wondered if maybe Tristan would suit him better, but no, I couldn't see that either. So he was just 'baby'. He was literally 20 minutes old when Katrina came in. She entered the room, with her hands on her hips, aged 2 and a half, and wanted to know 'where's by baby brother Cameron then'. I have no idea where it came from, as far as I was aware she knew no one called Cameron. I looked at him, I looked at Katrina, and that was that, from then on he was Cameron. Just before I registered him, I looked at him, still unsure whether I could called him Oliver, but no, he was definitely a Cameron.</div>
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The first year of Cameron's life wasn't easy. He wouldn't really grow very well, he was constantly sick, he had lots of hospital admissions and lots of appointments. We tried almost everything going. He exhausted both our local hospital, and the nearest children's hospital with tests and poking and proding, and still no real answers. At 18 months old I was told I'd be extremely lucky if I still had him when he was 2. He was losing weight so quickly, acting like a starved child. He'd search the floor for crumbs, despite the fact he'd JUST eaten.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi31g_4qdkYDhYoo3rEMv1lT9gIGNWEL2RDcPXUWZIxgoeHzncdjo7jlxBLjOJm4dgDvviF3sEhDwdg7-I1DQ9s0nz_aQLCFexa2R5SLkv4HTU6GSnkcsapzcDa6lKZANuPKjxuEQqVCk/s1600/222661_20898523112_4495_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi31g_4qdkYDhYoo3rEMv1lT9gIGNWEL2RDcPXUWZIxgoeHzncdjo7jlxBLjOJm4dgDvviF3sEhDwdg7-I1DQ9s0nz_aQLCFexa2R5SLkv4HTU6GSnkcsapzcDa6lKZANuPKjxuEQqVCk/s320/222661_20898523112_4495_n.jpg" width="240" /></a>He'd had tests for so many different things, and everything was negative. One doctor at Brighton Children's Hospital decided that he would send Cameron to GOSH to see his 'friend'. This friend was our (now) favourite doctor. He took one look at Cameron, and decided he needed an endoscopy. From this we were told he had a rare form of Coeliac's disease (see previous post 'it's only a diet, right?). I remember that day like it was yesterday. The day I thought my whole world had ended. I was 21, and I was still getting used to parenting on my own. I went to see the Dr, and he told me I had to take gluten out of Cameron's diet. What the hell was I going to feed this small child, with bread and pasta and cakes, sausages and burgers, chicken nuggets taken away.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-xVFjiC2pPYrB9SnRlnueSHduoAnhSaFfajAadwk_zmqpeLoF42PpXiHh9aCvo7caRmouoMbUZ9rvx4oVZX9gL6rRkVXnTEUGU9hh2OoW71RpVTE_2KkkPKPPKvvYHLl3VtybNbMuZGQ/s1600/225086_20898193112_1471_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-xVFjiC2pPYrB9SnRlnueSHduoAnhSaFfajAadwk_zmqpeLoF42PpXiHh9aCvo7caRmouoMbUZ9rvx4oVZX9gL6rRkVXnTEUGU9hh2OoW71RpVTE_2KkkPKPPKvvYHLl3VtybNbMuZGQ/s320/225086_20898193112_1471_n.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi31g_4qdkYDhYoo3rEMv1lT9gIGNWEL2RDcPXUWZIxgoeHzncdjo7jlxBLjOJm4dgDvviF3sEhDwdg7-I1DQ9s0nz_aQLCFexa2R5SLkv4HTU6GSnkcsapzcDa6lKZANuPKjxuEQqVCk/s1600/222661_20898523112_4495_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a></div>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi31g_4qdkYDhYoo3rEMv1lT9gIGNWEL2RDcPXUWZIxgoeHzncdjo7jlxBLjOJm4dgDvviF3sEhDwdg7-I1DQ9s0nz_aQLCFexa2R5SLkv4HTU6GSnkcsapzcDa6lKZANuPKjxuEQqVCk/s1600/222661_20898523112_4495_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"></a>We survived it. And we still survive it. It just felt like it was one thing after another with Cameron, the steroids he needed caused awful bruising and people used to look at it like I was doing somethin wrong. I felt so self conscious being only young with two small children and one on the way, that I avoided going out if possible. I didn't need people assuming something bad was happening to Cameron when it was merely the steroids, and him learning to walk. Cameron didn't walk until he was 23 months old. He met all his milestones quite late. He struggled (and still struggles) with his speech.<br />
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At the age of 3 Cameron was give a diagnosis of 'microdeletion of chromosome 16p11.2'. I accepted it and moved on. He is who he is. He is my bug. Nothing has come naturally for Cameron. Actually that's not true. His ability to love everyone and everything, animal or person, is natural. He sees the best in people, before he sees any flaws. He has so many friends at school, I'm not even sure if it's physically possible to not like Cameron! He appreciates everything, no matter how tiny. He is shy and quiet, and very well behaved 98% of the time, but somewhere beneath the surface he has an amazing, inspiring determination to defy the odds, and get on with his life.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihxMZvi3UsEaOuwv51uACM4pPAXJ7i2zZdjiGrg5nQZufOFUn0-5XxlkzV9s41xmM8gvi0YiN8c9V95aL3ctXEWCjEjvwe-ckeHdJMvZUiLqUN-V1186ttz-hhyphenhyphenhBtA7oKMLKNVjhliLw/s1600/63327_451567868112_1592903_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihxMZvi3UsEaOuwv51uACM4pPAXJ7i2zZdjiGrg5nQZufOFUn0-5XxlkzV9s41xmM8gvi0YiN8c9V95aL3ctXEWCjEjvwe-ckeHdJMvZUiLqUN-V1186ttz-hhyphenhyphenhBtA7oKMLKNVjhliLw/s320/63327_451567868112_1592903_n.jpg" width="177" /></a></div>
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On Cameron's birthday I found myself appreciating Cameron so much more. 5 years after we were initially told he would be alive. This year has been a huge year for him. He is no longer bottom of the class. He is reading, he is writing, he has friends, he has been going to parties, he has been really well health wise, he is starting to have his own interests, his confidence is ever growing, his personality is growing too. He is turning into an individual, and while I should have realised earlier, I didn't. Katrina has always been very independant and always had her own personality, Cameron hasn't really, or maybe I haven't realised because I have been so consumed with the medical stuff. I am starting to learn who Cameron wants to be, not who he thinks other people want him to be.</div>
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For Cameron's birthday we took him to the circus. It was a rare treat. I'm not actually sure we've ever done anything like that for the children. Katrina went out with Brownies but all 3 boys thoroughly enjoyed it. Then on the Monday Cameron went into school covered in the mandatory badges, with the usual bags of sweets for his class. He had a good day, and is having great delight at telling everyone 'I was 6......now I'm 7!'. And although he really isn't growing, and he really is tiny compared to all the other children (he's the size of a 4-5 year old) he see's himself as 'bigger'.</div>
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Don't let anyone tell you what your child will or won't do, nor how they will turn out. Be proud of who they are, not worry about who they should have been. Don't write off 'young Mum's' and don't write off 'Mental Mum's' either. Cameron continues to amaze and inspire us, and it's exciting watching his character growing, I don't know who he'll be when he's older, I don't know what he'll do, I know at his age my parents had my life mapped out. I don't have Cameron's life mapped out, I dont' care what he does in his life, as long as he does it happy, and content, and staying true to who he is. He may have had a crap start in life, but he hasn't let that define who he is, and we won't let it either.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4d2-yV4HBcZAF3nXlnze0Q0D5keUjxGsuTofl88KVQM0IrASkX3vzHfZPGghao-CjhNNlxLPec-o_A6WEs6Xs9xxq2zE_Lo3vRpE2V5YJa3wti2HCr70G5Eyu_F9RUKHMDjGxICL-gb0/s1600/311_41358238112_4983_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4d2-yV4HBcZAF3nXlnze0Q0D5keUjxGsuTofl88KVQM0IrASkX3vzHfZPGghao-CjhNNlxLPec-o_A6WEs6Xs9xxq2zE_Lo3vRpE2V5YJa3wti2HCr70G5Eyu_F9RUKHMDjGxICL-gb0/s320/311_41358238112_4983_n.jpg" width="240" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBJvEU-Z6eKyVI5heFxtFz5BLCA3wApmE87Lw5O3rAQiAX6U3XQ9d5X9xxXaqQWZjFIqEzJ9ONQbiKNiQ9Ooi8pW_vR0sSFeGBaNgpfCxqxtfktFF9mN2d9upPRrJdMyiylX2RSyUcjuQ/s1600/6209_115951943112_6951183_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBJvEU-Z6eKyVI5heFxtFz5BLCA3wApmE87Lw5O3rAQiAX6U3XQ9d5X9xxXaqQWZjFIqEzJ9ONQbiKNiQ9Ooi8pW_vR0sSFeGBaNgpfCxqxtfktFF9mN2d9upPRrJdMyiylX2RSyUcjuQ/s320/6209_115951943112_6951183_n.jpg" width="214" /></a>Everyone who decided to turn their back on Cameron as a 'poorly child' or me as a 'young attention seeking mum'....screw you. You missed out on the most AMAZING child. He has taught me so much, he has changed my life, and my outlook on life for the better. I have learnt so many things that I never would have learnt if it wasn't for Cameron, and while some things I'd rather not have learnt, I wouldn't change him one little bit. Cameron may not be the 'perfect child', or a 'picture of health' but he's learnt things about life that some adults are yet to learn. Those who turned their backs on us should be ashamed of themselves, and embarrassed, but I know they won't be, they are living the life they always wanted, selfishly, while I gave up my life for Cameron, I gave up a job I loved, but I loved Cameron more. You don't deserve to be in my son's life. I hope one day, when he wants to come and find you, you kick yourself. And the only person to blame is yourself. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7G8JM8HgitFrLTaPGsQxXBpihyIhr0fkfKO8j7Vt4EpQvDAL3IviP-xAA47iVRPJDS3p5TZxNGpcJoSGvhW1I6qzkzPFRq4yAd1YZbU53k2SZRd70Bnp5_qfkWXtMFXTjLFWbFopGsMY/s1600/227866_20898188112_1176_n.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7G8JM8HgitFrLTaPGsQxXBpihyIhr0fkfKO8j7Vt4EpQvDAL3IviP-xAA47iVRPJDS3p5TZxNGpcJoSGvhW1I6qzkzPFRq4yAd1YZbU53k2SZRd70Bnp5_qfkWXtMFXTjLFWbFopGsMY/s320/227866_20898188112_1176_n.jpg" width="240" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGnVRPcsseePJtd-BivQ2BqoDhreuNuSEm5tSlXMpP440S6aw6wPBFHEHa2RxFfxYGrO1je7y-66YSV3-G7Bfk_Z5d5BQJycX21Mbn3q0NAadfbKHm30y4gduccahoRYPYado6DkmnzQI/s1600/562797_10150950674243113_760764539_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGnVRPcsseePJtd-BivQ2BqoDhreuNuSEm5tSlXMpP440S6aw6wPBFHEHa2RxFfxYGrO1je7y-66YSV3-G7Bfk_Z5d5BQJycX21Mbn3q0NAadfbKHm30y4gduccahoRYPYado6DkmnzQI/s320/562797_10150950674243113_760764539_n.jpg" width="239" /></a>But for now, I will continue to love Cameron, no matter what, unconditionally, I will continue to support and encourage him in WHATEVER he wants to do, or wants to try, whether I think he can do it or not, I'm not going to be the one who tells him he can't do something. You never know until you try!</div>
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I love you Bugless. Happy Birthday little dude. Mummy will love you forever. No matter what.</div>
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<br /></div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com3tag:blogger.com,1999:blog-6167142684357502205.post-81036238443866175182012-06-20T20:30:00.000+01:002012-08-11T22:38:33.282+01:00The hospital stay like no other.<div style="text-align: justify;">
I know it's been a while since I blogged, and I promised a blog about our last hospital stay, so that everyone knows roughly whats going on (for those of you who are interested) and although I am sure no one is particularly interested, I'd like to think there is someone just wondering how it went. Well.....I don't even know where to start!</div>
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We were due to be at GOSH on the Wednesday. Because I can't drive, and we have a lot of medical <strike>crap</strike> things to take, we get hospital transport. This consists of a prius (normally) coming to pick us up, with the driver wearing a suit, and the cars being ridiculously clean and tidy, and then you are going to put a child in their. Well, on the Tuesday I realised I hadn't had the usual call to let me know what time I am being collected, so I decided to make a call. Doesn't that sound simple!?</div>
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I phoned GOSH switchboard, and asked to be put through to transport. They put me through, and it rang for ages before someone decided my call was worth answering. I spoke to a lady who said I had come through to the wrong 'department' and they would put me through. So.....I was then on hold to another 'department'. Eventually I got through to a man, and I simply stated that i was being picked up tomorrow, and I just wanted to know what time as no one had phoned me to let me know and I wanted to make sure I was ready. He told me that they didn't confirm bookings, sorry. That was that. So I phoned GOSH switchboard, again, and they put me through to transport, again, where the man told me I had come through to the wrong department and he'd put me through.....I'm sure I've been here!? So, before I had chance to answer I was on hold again. And I got through to the other 'department' who told me the same thing, and went to hang up, and I told them not to hang up, if that was the wrong 'department' they needed to put me through to the right 'department' where I was told they didn't have that facility and hung up. I decided to give it one more time before I phoned the Endocrine time while banging my head against a brick wall. So, once again, I made it through to the switchboard, I asked for transport, and before I even got as far as explaining what I was after, I told the man that I did not want to be 'put through' again, I simply wanted an answer as to what time I was being picked up, otherwise I would not be ready, and I would not rush to get ready, and I may just not get in the car at all. And all of a sudden, he could log onto his computer, find the right page, and tell me, that I will be picked up in time for 10.....so that means I will be picked up about 10ish? No, 10 is when they will drop me at my 'destination'.....so they will pick me up about 630am-7am. I stated to him that next time, it's an idea to RING people to let them know what time they are being collected, especially that early in the morning as there is no way I would have been ready for that time otherwise. Then he started blaming his collegues and I just said it didn't matter who's fault it was, it didn't happen and it should have, and now I know that's fine (well it's not).</div>
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So, my plan of take my children to school and collect my medications on the way home from school went right out of the window and I had to do a mad dash to the pharmacy to pick up my medication, and I was beyond glad that I did, because I'm not sure what would have happened without it (including emergency diazepam which I always have for hospital stays). Then I had to hurry up and restock my TPN box, and pack everything for a 2 day stay. Honestly the amount of stuff one small child needs is beyond ridiculous. It looks a little like this:</div>
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So, I get up with the kids, get them ready for school, get Rowan up (connected to TPN, and feed) throw some clothes on him. Chaos. The man with the car knocks on the door, he parked in the wrong place, as usual, grumbling about how I really should tell people my front door isn't ACTUALLY in my road when they phone to confirm, to which I bite me tongue as it's 645am, I have about 3 hours to spend in a car with him, and I'm sure moaning about how maybe I would, if I actually got a phonecall confirming in the first place, but I don't. I just ignore him and continue to get ready. So, we haul all the <strike>crap </strike>stuff to the car, and I leave the 'men' to start packing the boot. The driver asks me if I need the car seat (which i had already said I needed when I phoned up the day before) and I said yes please. He pulls out a booster seat. The kind I would put Katrina on. No back, no nothing, literally, the ones you get for £10 from <strike>Tesco</strike> your local big supermarket. Now, I wouldn't put Ayden on one of those booster seats personally. But with Rowan, it's not only ILLEGAL, it's downright dangerous. He would be as safe on that as he is just sitting on the seat. So I stroppily said no, and went and got my own car seat (one more thing for me to have in hospital!). Once the car was packed, and we got in the car, the man asks me why I got so stroppy about the car seat.</div>
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Ok, so, maybe you think I am a little bit out of order. He is 3 afterall, how would they know? Well, to begin with, a 3 year old, even an average 3 year old, would struggle to be safe on a booster seat like that. I'm not even sure it's legal. But, I get hospital transport ALL the time, and have this problem every time. Everytime the driver ensures me that they will notify the 'office' that Rowan is not an 'average' size 3 year old, and that he needs a 'toddler' car seat. And EVERY time they bring him the same booster seat. I suppose you could say that it's my responsibility to supply the car seat if I'm not happy with their option, and you would be right. Have you ever carried one of those car seats though? I have to carry all that above, with a toddler car seat, and a 3 year old, connected to TPN and feed, from one end of the hospital to the other. On my own. Because it's against health and safety for the driver to help you. Nor will they drive you to the door nearest the ward you are going, because they are not allowed. So....I have to pile it all into the buggy, push the buggy with one hand, and carry Rowan with the other. I COULD in theory ask for a porter to help me, but you have to wait 30 minutes for them to help you. It just isn't worth it. So, I put Rowan in a baby car seat. The same one you bring a newborn baby home from hospital in. If you were ever in any doubt to Rowan's size, this is him in his 'baby' car seat.</div>
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He is about 2kg off the maximum weight for the car seat, and he has about 2 inches left in height before he is legally too big for the car seat. Then what? Well by then I will be driving, and I will drive myself. Although this will be a nightmare, and expensive to park, I am fully aware of that, it will also be the only way that I will feel that my son is safe on the journey to GOSH, and we can do it in our own time, stopping for coffee or the toilet. Also, he will have a rear facing car seat. Yes, I am going to rant a bit about car seats. I have HUGE issues with car seats. Why is it, it is seen as a milestone to turn our children to forward facing at 9 months old? Is celebrating the possibility of increasing the risk to our child really something to celebrate? It is proven that a child is at high risk of so many injuries including internal decapitation if in a collision and the child is in a forward facing car seat. Why is it, in some countries the advice is to keep children rear facing until 6, others 4, and yet we are still at 9 months or 20lb? Why? It would appear that we do not care as much as our children. Well, I know how difficult it is to get a rear facing car seat, once they hit the 13kg weight limit of the baby car seat, I have been looking. And the cost is immense. The big companies like Graco and Britax do actually make rear facing car seats for older children, for other countries. Apparently the British do not want them. Did you know they exist? Do you really know the dangers and the risk? Have you seen this video? It is one of hundreds on youtube, showing you the same thing. I know these car seats are expensive, but can you really put a value on your children's lives?? So, when I do drive, Rowan will be having a rear facing car seat. Because of his hypermobility he is at higher risk again. And then counter in all his additional tubes and lines and it is just so much safer. So no, I will not be putting my 80cm 3 year old onto a booster seat!!</div>
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<a href="http://www.youtube.com/watch?v=sssIsceKd6U">Rear facing vs Forward facing crash test</a></div>
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So, we arrive at GOSH and I make the journey from the car to the ward and arrive in time for 10am. Just. Really our problems started before we were even booked in. The nurse came looking for us. She walked past us 3 times. You know when you know someone is looking for you, looks at you and thinks 'no' and carries on? Well she did that 3 times. She looked at Rowan, and I could see her thinking 'too small for 3' and carrying on. In the end the play specialist pointed out that this was Rowan. She then checked his date of birth 3 times with me. Like he couldn't possibly be 3. Things just got worse and worse. The ward we were on, is used for all sorts of gastro and endocrine tests. The first thing that always needs doing is weighing and measure. We never weigh Rowan in a morning because he is full of fluid from the TPN and feed overnight so we weigh him at about 2pm. Also, at this point, his TPN was in a KVO. KVO stands for 'Keep Vein Open' basically, his TPN had finished, but as a failsafe, it will run a small amount of TPN over an hour, as 'extra' so that his line doesn't block. I ask the nurse if I can just disconnect his TPN and come back in a minute to weigh him, especially as the weighing room is busy. I get told no. So we stand in the doorway, of a busy room, where children are being weighed, measured, and their blood pressure checked. It was chaos. Rowan was clinging to me, too busy for him. I bite my lip. A place becomes available, and I ask the nurse if she thinks it may be better to wait until the room is less busy as.....I didn't get to finish my sentence because she told me no, it needed doing now, so that we could be shown our bedspace as she had lots of things to do. After I made a comment that she either didn't hear, or refused to acknowledge about how I didn't realise that dependant upon a child's height, weight and blood pressure, depended on whether they qualified for a bedspace, or what kind of bedspace we got, and saying to Rowan maybe it's done on a star rating, so over 10kg gets a 3* bed, where as a child over 15kg gets a 4* bed. The other parent near me was amused anyway. The reason I asked about weighing him when it was quieter was because of what happened next. I started stripping Rowan off, taking his clothes off, a little 5 or 6 year old girl was also being measure at the same time. She started SCREAMING and crying, real tears. My heart sank and I wanted to cry for her. 'Mummy is that what they are going to do to me' she cried, pointing at Rowan. My heart broke for her. The ward that we were on, is usually used for low level stuff, endoscopies, overnight tube changes, blood sugar testing. So even though we are in a hospital, that doesn't mean other children are as used to seeing feeding tubes and lines as we are. Children in hospital are already anxious, and although Rowan is comfortable with his tubes and lines, other children aren't. We qualified for a bedspace. But it clearly wasn't on a rating. Rowan had a bed. A big bed. Not a cot.</div>
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I asked for a cot, because we had a risk assessment done at home and it was deemed unsafe for Rowan to have a bed. That is why it took 5 months for us to get a hospital cot, because if a bed was safe, we'd have a bed. The nurse informed me that there were no cots in the hospital (which I know can happen sometimes) and then she told me that Rowan would be OK in a bed, as he was 3 afterall. I asked several times and we never received a cot. This resulted in me being unable to leave Rowan AT ALL as he was unsafe. I took Rowan to the toilet with me, I took him when I went for a shower, I couldn't leave the ward to eat. My nurse kept telling me that we needed to wait for reviews, so Rowan needed to stay on the ward (despite being able to see the shop out of the window).</div>
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As I mentioned in a previous post my anxiety about this admission was huge. I did what I could beforehand, talking it through with the right people and coming up with 'alternatives' and coping mechanisms. One of which was walking away. I couldn't walk away! Another was take a break. I couldn't take a break. Go for a walk. Go grab a coffee. Phone someone. Nothing could be done. So I wasn't hugely surprised at my reaction, although the extent to which I lost my temper shocked me, and really shook me up.</div>
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Is this what is known as a balanced lunch?</div>
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Continuity of care is not always a good thing. The nurse was newly qualified, which was quite blatantly obvious and I'm not knocking new staff at all they need to learn. What shocked me though was that she was new, and thought she knew it all. I have experience with agency staff, and students, as well as newly qualified staff. It seems that because I do everything there is no real responsibility for Rowan, therefore it's good for them to learn, using us. And I'm fine with that. I am usually bombarded with questions from them, and I'm ok with that, afterall that's how they learn! And lets face it, Rowan doesn't exactly follow any book they will have read! We have participated in lots of trainee doctors courses too! This nurse however, argued with me over everything, from how I changed his nappy (yes seriously) to 'shouldn't he be in pants', to trying to tell me how to take blood and administer TPN. It went on and on and on. I did my best not to lose my rag.</div>
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We went in for what's known as a 'profile and fast'. Basically they check Rowan's blood sugar regularly for 24 hours (Rowan's was every 2 hours) while he is on a 'normal' regime. And then they 'fast' him so no TPN, no milk, no food, no juice, nothing. And we wait. And see how long it takes him for his blood sugars to crash. I knew this, it wasn't a huge problem. We started the 'profile' part and apart from the nurse irritating me by having to repeatedly stab him because she couldn't get blood out of him, refused my offer of help, and got stressed when he started getting annoyed and starting kicking her. I asked if we were doing the fast straight after the profile and she said no. So when I enquired a little more, because Rowan doesn't have something called 'Hyperinsulinism' (which is what our Endocrine consultant specialises in) he will have a 16 hour overnight fast. Over my DEAD body!!! So I enquired as to how that was going to work, as he needs TPN for calories, and that would mean him missing a WHOLE night of TPN, not only that but he would get dehydrated, his electrolytes would go crazy and they told me that's why we were staying an extra night to get him sorted out again after. Then I asked what they expected me to do? Sit up and wait all night for him to go hypo and then when he does, take blood and connect fluid? They said no they would do that. When we are trained to do TPN we are <strike>brainwashed</strike> <strike>connditioned</strike> taught that no one but us accesses Rowan's line, except in certain situations. So there was no way I was prepared to let them access his line for something that I do. So I had resigned myself to no sleep.</div>
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Everything is too high still.</div>
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The next day the profile finished at 10am. The consultant came round at about 1130am. He looked at Rowan, and then looked at me and said 'why isn't he fasting'. I wanted to cry. So I explained to him what had been said and he told me that just because he doesn't have HI, or a 'label' does NOT mean than he can be treated like a child who went hypo say once, while having a bug which is what the 16 hour fast is used for. He absolutely agreed with me that it was unsafe to do a 16 hour fast. So he spoke to the nurse and we had to do a 6 hour fast, on the day that we were meant to go home. I was hoping to be home mid afternoon, but the test didn't finish until 3pm. It was a long day.</div>
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I had issues with the nurse getting me blood bottles to take the bloods the night before the fast. As Rowan's TPN was coming down early (to start the fast) I was told by the consultant to make sure he's TPN went up on time. Rowan's TPN is connected at 630pm. So at 615pm I start to hunt for my nurse to get me the bottles. There are lots of nurses floating around making beds etc, but my nurse is nowhere to be found. So I asked another nurse if she could get me the bottles and I was told 'he's not my patient'. It was like a red flag to a bull. I know full well that if a member of staff has to leave the ward for a prolonged period they 'hand over' their patients. This nurse told me my nurse was on 'lunch' and I would 'have to wait'. It would have taken her 2 minutes to find the forms that were already printed off, and get me the blood bottles, but she refused to. My nurse reappeared at 7pm. I asked her for the blood bottles. 720pm she brings me syringes in a 'non sterile' tray. No blood bottles. I decided to ignore her <strike>stupidity</strike> <strike>ignorance</strike> inexperience and use my own syringes (the ones she brought me weren't even the right ones) and my own sterile field, but we argued over blood bottles for 10 minutes. She sheepishly went and got his blood bottles. I was mad. I was very very very mad. At 730pm, I FINALLY got his TPN connected. I put Rowan in the buggy, and I walked off the ward, I needed to calm down. I lost the plot. I, through gritted teeth informed the nurse I was leaving, and didn't even stop. I walked for about 20 minutes, and decided to go to another ward and see someone else who's child was also in hospital. I was there until 1130pm. With Rowan. No one phoned to see where I was, or if we were ok. It just made me feel even more like no one really cared to be honest. Even if they suspected where we had gone, why not just check. It's very late for a 3 year old to be up, and we had already discussed Rowan's strict bedtime routine.</div>
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I appeared on the ward at 1130pm and considering at the time the ward is locked, and you need to go through two sets of locked doors, not a SINGLE person came out to ask if everything was ok. I'm not actually sure if we ever had a named nurse at night, as I never saw one. No one came to say 'I'm your nurse tonight' or 'if you need anything just find me' nothing. So I settled Rowan and settled myself down for the night as I was up for 6am starting to wind Rowan off his feed. This entails turning the rate of the milk feed down by 2mls an hour, every 15 minutes, until he ends up on 0mls an hour. It takes a little over 2 hours usually. The fast then began and everything was ok. We got to 5 hours and his blood sugar was hovering. At 5 1/2 hours he was hypo. So the fast stopped, and he needed treating for low blood sugar. I got him all dressed and sorted out to run to the shop to get him crisps, as that what he was demanding. They told me that he couldn't leave the ward until he had eaten as he was hypo. 20 minutes later they bring him something to eat. They didn't check his blood sugar again. I checked it myself. 3.1. I was not happy, he ate his food, and then I tried again to go get him crisps. No, I couldn't leave the ward until they had checked his sugar again. When I enquired when they were going to check his blood sugar again, they said in an hour. I pointed out that he had a Hypo Plan, but they told me he'd be OK as he has not got Hyperinsulinism he would be fine. In all fairness he normally is fine, but they didn't know that. An hour later, they checked his blood sugar and now it's way too high.</div>
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Thankfully once the endocrine team were bleeped and they were informed that I was perfectly capable of dealing with Rowan's sugars, too high or too low, and they let us go. We didn't get home until 730pm, but we got home.</div>
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I'm sure this was just a one off. I'm sure it was just because we had an inexperienced nurse. I'm sure it felt worse because mentally I was struggling and none of my 'coping' plans could be put in place. 4 days after I came home and I could finally write an objective email outlining the problems I had had, rather than losing my temper and putting lots of comments in that I would have regretted sending later. I sent that email to the Endocrine team, and the Gastro team, and I know that further meetings have been held and hopefully this shouldn't happen again, to me, or to anyone else. I am grateful that my complaints were taken seriously. I also had apologies from both teams, as neither were hugely accessible during our 3 day stay. It should have been simple. It rarely is.</div>
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So, lots of lessons were learnt. We know Rowan can ONLY go 5 hours without eating anything, and that is ONLY if I've spent 5 hours beforehand 'winding' everything down. Other than that, its been a steep learning to curve into finding out how 'other' wards handle Rowan and me. I learnt a lot about how I manage situations, and I need to speak to my team. I learnt to appreciate our usual ward just that little bit more. And the team at GOSH learnt a few things too.</div>
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Let's hope the next stay will resemble something closer to what I expected.</div>
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Rowan's 'I can't reach' face.</div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com4tag:blogger.com,1999:blog-6167142684357502205.post-50644533014799422262012-06-03T16:56:00.002+01:002012-06-03T16:56:50.210+01:00A genuinely good day<div style="text-align: justify;">
So, this was that week, that I thought was going to be the most important week of the year. Isn't that what I said? Well, I may retract that, or maybe I won't. I'm not quite sure yet. It was a complicated week. It was a rollercoaster, and my mental health was tested to the limit, and then some. I learnt a lot about myself this week, as well as the boys.</div>
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So, I will start at the beginning. Monday. Monday we took Cameron and Ayden to their outpatients appointment at GOSH (Great Ormond Street Hospital). I took Katrina to school, after being told I was a 'crap Mum' and all that stuff that goes with it (all because I wouldn't let her winter coat, it was so hot it was ridiculous and she wants to take a coat 'in case' that's a whole different story that's for sure!) and said the angry 'goodbye, have fun at your friends, come home in a better mood' goodbye. I went home and we had a fairly relaxed couple of hours, before we left the house to head to London. </div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNFj5ndmRMMHtukaD-FBaTIPnElYb_LkWlupq0mMqpQZ4l89mnMWNCWaEOkwt1CKoWjxKlpNaLqPXEhDScLISgEPLW7AYtZoPQlE0tTMv6wR722G2ukt_B3cewBUQEJXLu_uEZA7rdzew/s1600/527741_10150893315228113_602063112_9984488_1661919212_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNFj5ndmRMMHtukaD-FBaTIPnElYb_LkWlupq0mMqpQZ4l89mnMWNCWaEOkwt1CKoWjxKlpNaLqPXEhDScLISgEPLW7AYtZoPQlE0tTMv6wR722G2ukt_B3cewBUQEJXLu_uEZA7rdzew/s320/527741_10150893315228113_602063112_9984488_1661919212_n.jpg" width="320" /></a>We decided to leave a little early, rather than just go to London, stressing the train is delayed and we're going to miss the appointment. So our appointment wasn't until 420pm but we got the train at about 11. We arrived in London around 12ish. We took the slow walk down toward GOSH, apart from it being ridiculously hot, it had been a nice journey. The boys behaved, we took lots of pictures, it genuinely was lovely, and the day just continued to be relaxed, calm, and enjoyable. I was a little disappointed that Katrina wasn't there to join us, but she was having a whale of a time at her friends house, and I have to remember that she is 9 now, and just because she isn't with us, doesn't mean we shouldn't have fun. So, off to Nandos for lunch!! Rowan shocked us all by eating not just chips but chicken too, and KETCHUP!!! We popped to get some cold drinks (my god it was HOT) and decided we would go to the park with the boys for a couple of hours before our appointment, get them nice and tired so they weren't hyperactive on the train on the way home.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizK07Q4s76sVdAEsWtFbkLnlJFV7ik9zUU_RXrxTzRjK5IWBIGO0kPdw8SteaM9NHsAea5InCaJoLoWSujOJF13vfW-XYdLT6i-IZYCIs3zSYN5Rdxt2kU2TlT38t6ZvQiznUxwfAcw14/s1600/545802_10150893316778113_1064760344_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizK07Q4s76sVdAEsWtFbkLnlJFV7ik9zUU_RXrxTzRjK5IWBIGO0kPdw8SteaM9NHsAea5InCaJoLoWSujOJF13vfW-XYdLT6i-IZYCIs3zSYN5Rdxt2kU2TlT38t6ZvQiznUxwfAcw14/s320/545802_10150893316778113_1064760344_n.jpg" width="239" /></a>Rowan was AMAZING. He LOVED the slide, and he loved the swing, and even more importantly it's the first time we have been to a park and he can play with his brothers. In a park, there are things that all my boys need help with. So rather than just having to help Rowan the whole time, they all needed a bit of help with something, so they all got a little bit of Mummy time. It's not often that I just appreciate doing 'normal' activities. But the park that day, I just felt like Mummy. Pushing my boys in the swing, coaching Ayden to believe he COULD do the rope walk thing, and showing him how to climb the rock wall and use the fireman's pole. Laid on the witches hat with Cameron, just relaxing looking at the sky having a cuddle, while he tells me he loves me. I wasn't anxious about the appointment (thank you Diazepam) and I had no expectation, I had no mission, it was just an appointment. The boys were on the zip wire (honestly Coram's Fields is like no other park my boys EVER have been to!) and Rowan was in the buggy, resting, his legs were hurting. And my phone goes. It was the doctor's secretary asking me if we could make the appointment now, the doctor has no one else to see, and if we can make it now he'd really appreciate it. So off we go, it really was hot, and I wanted to leave on a good note, not with me screaming at the boys, and it would be nice to not be quite so late home.</div>
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So we did the ridiculous booking in process. Anyone who has been to GOSH will know how RIDICULOUS the outpatient thing is. Not only is the outpatients not actually in GOSH but building next door, which is another hospital which confused me the first few times, the process is a little like this.....and no exaggerations. About 40 minutes before your appointment, you stand by the lift......you wait 10 minutes for the lift to make it to the ground floor, and it's full, the lift empties out, and then before anyone manages to get in the lift the doors close and it's gone. So you press the button again, repeat the process, but actually manage to get in this time. There are only 2!! Lifts, for all those GOSH patients (plus the other patients). There are stairs, but the point is that children are in pushchairs or wheelchairs, or just can't climb stairs, and there are 2 lifts. So in the lift you get, and you have to go to the first floor (or second floor I can't remember). You get out of the lift, and 'book in' once you have booked in they tell you which floor to go to, to actually attend your appointment. So we repeat the lift saga, however it's more difficult this time because you aren't at the bottom, so most of the lifts are constantly full. You make it to your floor, finally, where you have to book in AGAIN!? I just don't understand this process, and I will admitt I am probably one of those parents that gets cursed because when I go to TPN clinic I don't book in at floor one and just go to the right floor and book in there. (The lift situation is just ridiculous!).</div>
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Anyway, today, I decided that I wasn't going to do that. Lee doesn't like lifts, so I sent him up to book us in, and I got in the lift and went straight to the right floor (experience teaches you which floor you need to go to) I took the boys and did the 'oh my gosh your face and hands are filthy your get backside into the toilet and get cleaned up NOW' thing. Once they are all presentable I book us in on the right floor (this also gave Lee enough time to book them in on the correct floor). The kids get to play a bit, and they have fun with the toys, and fighting with all the other kids over the little tykes car. And then the doctor comes out, lets call him N and we enter the appointment room.</div>
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Now, usually entering 'the room' fills me with dread and anxiety. Always. But, either the diazepam was good that day, or the fact I had nothing I needed to say or achieve helped a little bit. Maybe it was the fact I wasn't on my own, or maybe it was the fact that N and I have a long standing professional relationship where he understands me and how I work and what I need to hear and how, which makes me feel safer than usual, I'm not sure. N sits there, with that big grin on his face, you know, the one I expected, when he looked at Rowan, he actually couldn't stop looking at him. So we talked about Cameron first. Cameron is going at an expected rate (very slowly but ok) the problems he is having are related to his desire to eat things he's not allowed. It's not a great idea, but it's a process he is going through because of his age, wanted to test the boundaries. So, we know that he still can't really tolerate anything. We call it 'challenging' when you try them with something, you know previously made them ill, just to see if it's still the case or not. For Cameron, it is. We also found out, that, although not medically documented, it is well known that children who have gut inflammation and coeliacs disease, can be overly emotional. This is DEFINITELY the case for Cameron, and it now gives me weight to telling people who want to bounce him backwards and forwards from CAMHS (Child and Adolescent Mental Health Service) no. We have now been there twice. No more.</div>
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Ayden was next, we discussed the diet and his weight and decided that he is doing slightly better than Cameron, he copes with Alpro yoghurts (soya) but he can't eat say, something else with soya in, before we have a problem, so it's just one tiny step at a time. N said we were doing everything right, keep challenging, one thing at a time, and see how things go, he said we know what we're doing, and he is more than happy for us to drop him a line if we need to, we know where he is. We talked about the issues we have had with Ayden since we saw him last, so his hearing and his grommets and adenoids, and we were told that that is VERY common in children with multiple allergies. But he's glad it's now all sorted, and we were proactive in that. Then I mentioned his growth hormone deficiency, and his hypoglycaemia problems. He wasn't happy. One of the things I like about N is that he does what the kids need, no matter how much that may upset other people. So in our case it's upsetting our local team. He is referring Ayden himself to the same Endocrine doctor that we see for Rowan. There are lots of reasons why this is a good idea, so it's the next step for him. This may mean however that the nasty tests we have done for Ayden already, will have to be redone, it depends how willing our local team are to hand over information.</div>
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Then, N shuffled his paperwork, and cleared his throat. Usually code for 'now we need to talk about something serious'. And my heart stopped, and panicked for about 10 seconds. Back in January N took bloods from all 6 of us, for genetics we were told. They have been stored since then (somewhere in a fridge). This blood will, next month, be sent off for testing. It may sound silly that I didn't really understand what this blood was for, but there are little bits of blood from us all over the world. But this blood is really important. Cameron has had a genetic test done called a 'Micro Array' test, which shows all the little chromosomes and which bits are deleted or duplicated, or other kids of rearrangements. (this is how we found he has 16p11.2 microdeletion). We checked Ayden and Rowan for this deletion and they do not have it. N has decided there is no point doing a micro array test on Rowan and Ayden, because actually, if they have a deletion or a duplication on one or more chromosomes it doesn't really say a lot because there isn't a lot of information on most of the rearrangements anyway! So, he was saying the micro array test is like smacking their genetic make up with a sledgehammer. This 'new' testing, is like chipping a bit off, and going through it with a fine tooth comb.</div>
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The bloods will take 4-6 months to come back, and it may tell us the gene that have caused the boys problems. If we can find the gene (a big IF) we may be looking at better management plans. N was saying, that he is unsure whether it's the boys diet that's helping, or the periodic steroids they have. If we can find the gene, then we may be able to find a better plan. From there, we may be able to get the boys back to eating whatever they like. Maybe. If we find the gene, and we can find out what is 'wrong', we may also find out whether Cameron, Ayden and Rowan actually have the same 'diagnosis' just with varying degrees of severity. N was explaining how he believes Rowan may have the key to solving a lot of problems in the world. Our little 11kg, 80cm tall 3 year old, needs 5000 calories a day to grow. If we can find out WHY he needs those many calories, and it can be recreated, obesity wouldn't be a problem no longer. He also stated that a lot of people would like to get their hands on Rowan, and run tests and poke and prod. </div>
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So, here comes our new role as Rowan's parents, learning how to say no. No you may not run that horrible nasty test that is just there to satisfy your curiosity. No, you may not take more blood. No, we are not staying in hospital. Picking and choosing which tests they can run and which ones they can't. We're not going to say no to every test, but there needs to be a reason to run the tests, we need to start asking people to justify their requests for the various tests. Not just on a curiosity basis, he is a 3 year old little boy, not a medical 'thing'.</div>
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It was an appointment packed with information, I'm glad we went early. N got to go and watch his son play football for the first time in a VERY long time. Some will say that I don't need to know that, he is a doctor, but, it also shows he is human, and a parent, just like us.</div>
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I will post in a little while about our hospital stay with Rowan. I don't want to muddle to the two, and I don't want the positives of this day be lost amongst the other post.</div>
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<br /></div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0tag:blogger.com,1999:blog-6167142684357502205.post-41407008643853173452012-05-27T22:03:00.000+01:002012-05-27T22:03:00.328+01:00Dear Mum in the Playground.<div style="text-align: justify;">
Dear Mum in the Playground,</div>
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I am writing to ask you if you could please stop your whispering and pointing and giggling with your friends, while clearly talking about me and my family with your friends when you see us in the playground. Do you really think I haven't noticed? Not only can I see you, I can hear you, I'm not stupid and I'm very observant. You also need to remember that I have 4 children, and sometimes my children hear you as they walk up behind you, they too have ears, and are not stupid. I know you're gossiping about us, and I'm sure you have nothing better to talk about than me and my children, and I suppose I should be flattered, but actually I'm just annoyed.</div>
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Yes, Rowan is in a wheelchair, and yes he has a tube coming out the bottom of his T-Shirt sometimes. Does it really warrant a point and a whisper, so that all your friends look and stare, and then all go back to whispering. Honestly, it used to happen in the playground and I'm sure we're all a little old for playground games and gossiping aren't we? Maybe you have nothing better to do with your time than gossip? Why don't you come and talk to me, say 'Hi', smile, 'good morning' or even something as mundane as mentioning the weather. Or if you want to know what that dangly thing out the bottom of his T-Shirt is, come and ask me, it may make your gossip not only factual, but also perhaps a little juicier.</div>
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I know you think you're better than me, and that's fine, you probably are. I know I'm stood there in my trainers, hoody and jeans, no make up, hair scraped back, but I just don't have time to spend putting on make up. I wish I did sometimes. Between getting up, and getting to school I have done about 100 things. You're lucky I remember to actually get dressed myself. And by the time I pick the kids up, I am ready to throw the towel in. Can you imagine doing the school run in high heels, it's a mile walk each way by the way, not to mention all up hill to get there. Not only that but we have 3 school runs a day to do. Between those school runs I have performed more medical processes that most nurses. Between medications and therapies, and popping to appointments, I also have to remember to get that TPN out the fridge, and make sure we have something for dinner. Only, I have to make sure I have enough for 2 seperate dinners, sometimes 3. I have cleaned my bathroom and done 2 loads washing. I have washed up several times, and swept my kitchen floor, twice. Can you imagine doing that in heels and pair of expensive trousers or with my hair down, leaning over the toilet?</div>
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I know you think I have the 'weird kids' and I know you didn't invite Cameron to your son's birthday party because he's the 'weird' kid. I also know you invited every other boy in Cameron's class. Do you not think your child over hears you when you talk about my son? Do you not think that hurts Cameron? Do you not think he wants to know why he can't come? Maybe I should send him over to ask you. But I won't, because I don't want his heart broken. I won't tell him that he hasn't been invited because he's THAT kid in class, the one that no one knows what to do with. But you know what? If you take away the speech delay, and you take away the diet, and you add a few inches to his height, he's EXACTLY the same as your child. You know, your child plays with my child in the playground. They play football, they play tag, your child doesn't see Cameron as the 'weird kid' he sees him as Cameron. Maybe you should learn from that. If you just talk to me, you may find we're not so different at all, and if you talk to me, that diet isn't so scary when you find out that you don't actually have to make any extra effort as I'll do that for you, for him, so he can be treated like everyone else. And you know what? His speech delay won't affect you either, because it's highly unlikely he'll even talk to you! But nevermind, I will make up some excuse for your behaviour, maybe your child was only allowed to invite a certain amount of children, maybe your child forgot Cameron, there are so many boys afterall! Maybe they are going to go and do something that Cameron doesn't like. But he knows. He's not stupid.</div>
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I know you think my children are 'babies'. I heard you say it. Yes, occasionally Cameron does go into class crying in a morning, and sometimes he will cry when I pick him up. Yes, sometimes when I pick Cameron up from school he runs and hugs me so tight it's like he'll never see me again. Yes, sometimes Katrina is screaming that she hates me, in a morning, and other mornings she's a perfect angel. Yes, she too sometimes is so excited to see me, and will scream 'Mummy' as she comes out of her class, and run and give me a big hug. My children show their emotions. Cameron goes into school crying because he knows he's not going to see Mummy for a few days, while she's in hospital with Rowan. Katrina screams my name and runs towards me and hugs me because for once I made it out of hospital on the day we were supposed to, and it's a huge shock. Sometimes Katrina shouts she hates me, because she's not been able to go to her friends house, or is missing out on something, because of Rowan. You see life is hard in our house. It's a rollercoaster of emotions, and situations and things move so fast that they often can't keep up. Sometimes they need those quick tight hugs, to hold on. Sometimes Cameron cries because he can't hold the tears in anymore. My children have see more and been through more than yours have, and I hope ever will.</div>
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My children, all of them, know all about TPN and Hickman Lines, Gastrostomy tubes and Jejunostomy tubes. I bet at least one of my child knows how to put the feeding tubes back in. My children know what a line safety pack is, and what a blood sugar machine is. They all know what those are. They know what food contains gluten, and what doesn't. They know all about growth hormone injections, and how to work various pumps. My children have a kind of knowledge I wish they hadn't. My 4 year old thinks a baby drinks a bottle through it's belly button. That is normal for him, much in the same way your toddler thinks a bottle or breast is normal. That doesn't mean they are 'weird kids' it just means they have a little more to deal with, and maybe they'd appreciate a touch of normality every now and again. </div>
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I know you're dying to know what's 'wrong' with Rowan. You stare at him in his wheelchair, you point and whisper, you stare at me, as I leave him in the wheelchair to help Ayden play on the equipment. I am not a bad mother, he can move that chair himself when he wants to. You look at me as he screams. He is having a tantrum, just like every other 3 year old, only he has the added problem of being anxious, and you know what, he's not stupid either, he notices everyone staring at him. I know you comment on the 'baby'. And I'll forgive your ignorance. I'll let you off the fact you KNOW how old he is if you REALLY think about it, because he was the 'baby who couldn't even eat properly' 2 years ago, remember that one? When all the children in the playground were taunting Katrina? I know you know, I saw you there, saying nothing, staring.</div>
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When we were kids we were taught to treat people how we want to be treated. I'm guessing you forgot that. I guess you also forgot that you shouldn't say anything if you can't say something nice. I'm not even asking you to talk to me. Infact I'd rather you didn't. Or maybe I would talk to you, entertain your probing questions so at least when you gossip it's fact and not fiction, but it would be for my children's benefit. Not yours or mine. I also can't be doing with the two faced stuff. Amazing how when you're on your own and not in a group you suddenly attempt the niceties. What is it, an attention seeking behaviour in the playground? Like to be the centre of the group. Good for you. If it makes you happy.</div>
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You see, amidst my panic attacks, and my tears, and the breakdowns I have while standing in that playground while you stare and whisper and point, I notice things too. I overhear things too, when I turn up a little early and it's just you and I in the playground and you are on the phone. Or when you go and have a quiet word with the teacher. You see your life is not so perfect either is it? And we're not so different afterall, just I learnt better manners. I know you go to the same mental health place I do, I heard you on the phone, and I saw you trying to sneak into the toilet while I was waiting outside. Unlike you, I don't judge people. Rather than be embarrased about it, remember you're doing something about your problems. Just like I am. You see your child who is lashing out at you, is showing his emotions, just like my children show theirs. And while you do your hair and your make up, and put on your expensive clothes and look down your nose at me, underneath it all you're just as anxious, and lost as I am in the world.</div>
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I'm not asking you to change your ways, I know that's too much to ask. I'm just asking you to think twice about what you're doing and what you're saying, and who you are saying it infront of. If you want to gossip, and make things up, knock yourself out. But please don't do it around your children, or mine. If it makes you feel a little bit more superior, and a little bit happier, then I'm pleased for you. But just remember, one day it will come to bite you on the arse, it's called Karma. I wouldn't wish my life on anyone. It's not always a bed of Roses, I have been in situations, and seen things, that I would never wish on my worst enemy. But at the same time, it's taught me to ignore people like you with their comments, it's taught me to appreciate the little things in life. So while my children are giving me that hug, holding on to their world, I also appreciate it, that they are still able to show me affection, and they aren't scared to tell their Mummy they love her infront of everyone. I hope you do end up with your perfect life, I really do. I don't want a perfect life, I don't want perfect children. I want MY life, with MY children. Because that is exactly how my life is supposed to be. In our house, we're all weird, in our house, we all fit, in our house, everyone is weird, and everyone fits. </div>
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Unlike in your life, where my children don't 'fit', in my life, everyone fits, because there is no such thing as a mould, or a slot where they should be. You'd fit too, if you wanted to. One day those friends of yours will realise, that gossip you heard at Campbell House, meant that you were at Campbell House too. Maybe they already have, and gossip about you and your children behind your back, infact they probably do. But you won't see me joining them, as my children are far too important to me. I used to like being the centre of attention too, I liked having lots of friends, but I learnt the hard way that 99% of those 'friends' are just using you for entertainment and when you really truely need a friend, you don't really have any. I hope you never find that out, or maybe one day it happens to you, and you will remember me in that playground, and think twice. Maybe there will be a moment, when I am the one that offers you that tissue as you meltdown while waiting to see someone at Campbell House. Maybe there won't, but the difference between you and I, is that I would offer you that tissue, I would return your child if s/he runs out the school gates, I would pick up that bookbag if you dropped it while juggling children and bags and lunchboxes. I would never alienate one of your children because of something that might mean I have to put a little bit of an effort into. And I would never gossip about you, or about the things I overheard. I was once where you are now, and I got hurt, very very hurt. And things never did get better, not yet anyway. So while you're laughing and talking and staring at my expense, all I feel for you is pity.</div>
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I hope, that whatever you say or do in your life, makes you and your children happy. And I hope you never have to go through the things that I have been through. While I have learnt life's lessons the hard way, I have also learnt the beauty of people and situations that you never will. I have met genuine people who care about my family, not people who use me for entertainment. I know people who would be there for me in a crisis. And while my friendship ring may be absolutely tiny compared to yours, I learnt what a friendship is really about. Trust, Honesty, Openness, Acceptance. These are things my children have learnt already.</div>
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Everyone is completely different, yet the same. </div>
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So, I will no doubt see you in playground this week, whispering and looking, pointing and giggling. And I will carry on, giving my children hugs, wearing my trainers, with my hoody and my hair scraped back, thanking someone somewhere, that we're not in your shoes, and feeling lucky, and appreciating the moment.</div>
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I hope one day, you see someone else like yourself, and remember.</div>
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From, your source of entertainment.</div>
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Claire</div>
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<br /></div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com1tag:blogger.com,1999:blog-6167142684357502205.post-54425219571325495332012-05-27T10:49:00.001+01:002012-05-27T10:49:27.947+01:00Letting go, just a tiny bit, trying to be normal.<div style="text-align: justify;">
<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Last weekend, when Lee came back from being away, we took the children out for dinner. I can't remember the last time we all went out for dinner to a proper restaurant. It was quite a few months ago that's for sure. We took them to a chinese buffet. We know what the boys can/can't eat, we have investigated previously, and they love it. It was so nice to have a 'normal' family dinner out. No drama, no meltdowns, just smiles all round. The stress of getting everyone ready was definitely worth it!</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">We are about to embark on what is quite possibly going to be the most productive, and most important week of the year, and it's difficult to know how to approach the week. 4 days of the week will be spent at Great Ormond Street Hospital with various children.</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Tomorrow, Monday, we are heading to GOSH (Great Ormond Street Hospital) for an appointment with the Gastroenterologist with Ayden and Cameron. Normally Katrina comes with us and has the day off of school, but she is getting older now, and spending a day at the hospital really isn't something she wants to do. The problem with this is that the appointment is not until 420pm. So a decision had to be made. Katrina, being 9, knows what she does and doesn't want to do, and we had two options. Do I enforce my parental right to tell her what to do, and deal with a stroppy, annoyed, bored, tired, more than likely screaming 9 year old, while stressing about TPN lines, and connecting TPN and feed, and making sure we don't lose a child. OK, so it doesn't sound particularly appealing, or, do I bite the bullet and ask someone to help. Asking people to help me out is not something that comes naturally, and I hate it. I chose to have 4 children, I should be able to look after them myself without help from anyone. I know what people are going to say, I didn't choose to have children with additional needs and I didn't chose to spend half my life in a hospital. It's ok to ask for help, it's not admitting failure. I have heard it all before, and yet, it doesn't change how I feel. Katrina also didn't ask to have 3 brothers who have additional needs, nor did she sign up for spending hours and hours at a hospital. So I bit the bullet, and I text one of her friend's parents. It felt horrible. I had to ask someone to help me, with Katrina. I did it, and she said yes. So, I will take Katrina to school tomorrow, and I won't see her again until after school on Tuesday. She is having her first EVER sleep over at a school friends house. I know she will have a whale of a time. While thinking about the fact my little girl is growing up (buying her shoes from the adult section was a bit uncomfortable!) I also have to remember that she is a lot more grown up than most children due to the situation she has been thrown into. It is difficult sometimes to know where the balance between being a 9 year old girl, and being a 9 year old girl who has seen the things she has seen, who knows more about drainage bags and feed pumps and TPN sets than 99% of other 9 year olds. So, she is having a sleep over. I know she is looking forward to it, and I know she will be fine, and I also have thought about how important it is for her to go to her friends on Monday. So she can see what other 9 year olds do, and how other families work. It is important for her to have some time to be Katrina, and not 'Rowan's sister'. She does do this quite frequently, she goes to young carers (but she is there because of Rowan and knows this is why) and she goes to Brownies. Brownies is important for her because it's a 'normal' activity, it's a group of girls, where at home it's mainly boys. She gets to be Katrina, her brothers can NEVER go to brownies, it will always be her thing. Today she has gone to Warwick Castle with Brownies, and I am so grateful to Brown Owl, she lives in the same street as us, and ferries Katrina wherever she needs to go. So Katrina goes on ALL of the trips that are offered to her. Going to her friends for a sleep over is just another step of 'normal' for her.</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Speaking of 'normal' activites, Cameron went to his second ever birthday party last weekend. It was the first fancy dress party we have ever done, and I have to say I believe it was a success. It was a 'Western' Party, so cowboy outfit it was. It sounded like he had an amazing time. He certainly looked good, and surprisingly, being dressed as a cowboy really suited Cameron! At the age of nearly 7, I have begun to realise that he too needs to start taking a little bit of responsibility for his own health. So, for the last 4 years or so, we have been <strike>conditioning brainwashing </strike>teaching him what he can and can't eat and why. It hasn't been until recently that I have realised how much Cameron's diet controls his life. We have to be careful where we eat, what we eat, it controls where we can go on a day trip, or if we can go on a day trip at all, and as we have 3 of them, we just kind of fell into a comfort zone. Now that Cameron is almost 7 we are having to move out of that comfort zone. I am having to let go a little bit. I have to trust him. So, I sent him to the party, with his own food, with strict instructions to ONLY eat what is in his lunchbox. Which, as far as I am aware, he did. And to top it, he sorted through his party bag, what he could have, and what he couldn't and what he needed to ask me about. The next stage is to let him go to a friends to play. Cameron is itching to go to his friends houses to play. We have always said no. Not only do I not like talking to other parents, I don't like having to almost tell them how to look after my child. I don't really trust other people with my children. Especially when feeding him the wrong thing, even just a tiny bit, can make him so poorly. So for these reasons I have either just put it off, or said straight no. However, he is 7, he is showing me he can make good choices, and can look after himself a little bit. So, the next step is to let him go to his friends houses.</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">And so, while trying to get my children to have little bits of 'normality' there is always the constant at home which is far away from normal. I don't know why, but I have a real issue with admitting that this is how we are as a family. I want to be 'normal' I want to appear 'normal'. I don't want to attract attention, I don't like having to ask people for help, I don't like having to rely on benefits from the government for my children, I don't like being different, and I don't like being talking about, or stared at, or pointed to. And more than that, I don't like my children being treated differently, pointed to, or stared at. They have enough in their lives. I want to be normal, and I am finding it very difficult to come to terms with the fact that our normal and your normal are so very different. Our occupational therapist came out to see us this week. And we should be getting a banister for Rowan on our stairs, that is at his height, so that he can learn to go up and down the stairs by himself. We have bought a set of step ladders so that he can reach the sink to wash his hands and brush his teeth. The OT is getting him a chair so that he can sit better at the table with his brothers and sister (ok she called it a highchair which I feel needs to be changed, as highchairs are for babies!). Everyone else is also hell bent on us looking and functioning like a normal family. We aren't normal, and I can say that, but I don't feel that.</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So back to this coming week. Monday we are at GOSH to see the Gastroenterologist with Cameron and Ayden. While I am sure that this appointment will just be a routine check and all will be fine, and possibly another short course of steroids for Cameron, you never can be sure. This will be the first appointment at GOSH for just Cameron and Ayden. It always used to have Rowan thrown in there too, but Rowan now has a different gastroenterologist to Cameron and Ayden. Rowan will be physically with us, and no doubt the consultant will comment on how AMAZING he looks, and grin the whole way through the appointment knowing that he saved Rowan (and rightly so!). However the focus will be on Cameron and Ayden. You never can be sure that out of nowhere they will land you with another test they want to do, or repeat scopes, or try xyz. How about we refer to so and so and see what they think. Part of me wants this to be an uneventful, boring, 'yes everything is fine, but here is your prescription, please now wait over an hour at pharmacy for your little prednisolone tablets' and part of me thinks, now that Rowan is stable and the focus is off of him, that maybe we should be investigating a bit more, moving forward. Maybe we ARE forward, and that's fine, and maybe I can be told that tomorrow. Over the years of dealing with constant medical problems, I have learnt while it's good to have expectations, don't get hung up on them, because they aren't always met. Set the bar low, and then you aren't disappointed. Expect the unexpected. I don't have a 'mission' for this appointment, unlike when I go for appointments for Rowan. So, instead, I am 'expecting' to have a fairly uneventful day with my boys (Katrina is at her friends remember) in London, maybe going somewhere nice for lunch, maybe making a picnic lunch and having it at the park behind GOSH, while letting the boys play in the park.</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Once that is over, we have a whole 24 hours at home, before we are back to GOSH again. For Rowan. Rowan is being admitted to GOSH, Weds-Fri. He will be under the Endocrine Team, which, for those who know the politics of GOSH, will know this fills me with much more confidence than when we are admitted under the Gastro team. So, what is he going for? Basically we have had a few problems with Rowan's blood sugar levels when he is coming off of his TPN. We manage them ok, and it's not hugely dangerous, but it's also not ideal. And while they remain manageable, the Endocrine team need to make sure there isn't another problem arising that we haven't accounted for or possibly predicted. So, he is going in for what is known in the endocrine world as a 'profile and fast'. Basically, they will test Rowan's blood sugars every hour for 24 hours. Then, once that is over, they will 'fast' him. So, no breakfast (which is key to keeping up his blood sugars as it's loaded with carbohydrates, a trick we learnt quite quickly with Rowan), no juice, no water, no milk feed, no tpn, no nothing. Rowan NEVER goes without anything. And we see how long he manages before his blood sugars drop. In an ideal world, they won't drop and all will be well. In reality, without the carbs his body will be expecting, his blood sugar will drop. It's a complicated process to those who have no idea what I am talking about, but the aim is to make sure that Rowan stays as safe as possible, and we spot any new problems as quickly as possible and start to treat them. Blood sugar levels are very important, blood sugar levels that are too low are dangerous, as are those that are too high. The first year of Rowan's life no one checked his blood sugar level. Never. In hindsight it was blatantly obvious that, with the nutritional state he was in (or not in!) blood sugars should have been checked. It wasn't until he was 14 months old that I noticed he had a problem. While being reassured that a blood sugar of 2.2 while on normal saline wasn't great but it would be fixed by 5% dextrose and was quite normal, I knew no better, and was kept in the dark about blood sugars. It wasn't until we were admitted to GOSH on an emergency visit, that I was told that 2.2 on saline was NOT ok. We walked through the doors, with a nurse from our local hospital. He was on 10% dextrose, and they kept him on that all the way there in the ambulance. We arrived on the ward, and his blood sugar was checked, and it was 2.1. The nurse RAN and started putting some gel in Rowan's mouth. I now know that is called hypostop, and it's a 'quick fix' for low blood sugars, but while it doesn't contain carbohydrates (which are used to maintain the blood sugar) he was yoyo-ing. So he'd go from 2.1, up to 6.4, back down to 2.3 within an hour. As soon as we were able to feed him his milk again he was ok. No one mentioned sugars again.</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">On another trip to GOSH, it was noticed that Rowan was VERY sleepy. Something most people but down to him being so underweight and so tiny, that he had no energy. A nurse did a blood sugar on Rowan, just to make sure he was ok, and it was 1.9 (a normal range is 4-7, although Rowan is allowed to go between 3.5 and 10 before he requires intervention) that nurse got Rowan some IV fluids. From there we were advised to 'spot check' Rowan's blood sugars and nothing else was mentioned. It was sent in a letter to our local hospital and we were supplied with a blood glucose monitoring machine (the same as they use for diabetics) and asked to check his blood sugars every 4 hours, and for the first week note them on a chart. I did this, and sent it to the hospital (at this point, I still was unsure what was 'ok' and what wasn't) the sugars ranged from 1.7 up to 3.8. I was told it was ok, as he was so underweight, that was to be expected. I accepted that as fine. Why wouldn't I? Then we were admitted to GOSH for our long stay (the 8 month one) and people all of a sudden started doing hourly blood sugars. Yes, my little boy, 9lb 12oz at 18 months old, had a blood sugar checked every hour of every day for 8 months. And the results were shocking. As soon as Rowan had his central line put it, and TPN was started, it was noted very quickly that he needs a LOT of sugar. He actually has the equivalent of 22 1/2% dextrose in his TPN. To put that into perspective, you can not run anything higher that 10% dextrose through a cannula (the needly they put in the back of your hand in hospital if you are dehydrated). Most people only need saline, or a little bit of sugar, 5%. Rowan has 22 1/2% dextrose EVERY day. This now means that he is completely dependant on his central line. If his Hickman line is broken, or we aren't allowed to use it, our options are VERY limited. We have a plan for if this happens. (I like to say if, but in reality it's when, I know we are extremely lucky that in the 18 months Rowan has had a central line we have NEVER had one break or block). If we just put a cannula in Rowan, and run 10% dextrose, his blood sugars won't take long to crash. There are two main things that can happen with blood sugars that are too low, one is a coma, the other is brain damage. So, Rowan's emergency plan consists of another kind of line that would be extremely temporary. We also don't know if the low blood sugars Rowan had for the first 2 years of his life, have actually caused some brain damange. At the moment all seems to be Okish but you never know. So, because of this with Rowan, we just have to keep an eye on him.</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So the stay sounds fairly simple and straight forward doesn't it? And that bit does. It's everything else that goes with it. We will get a Gastro review, and I get to ask any gastro related questions. This is so that I don't have to go back in a couple of weeks for clinic, as we are there anyway while not kill two birds with one stone. And that makes sense until you factor in that EVERYONE has the same idea. So physio will come and do a review, and gastro, the endocrine tests will be going on, we also will meet the pain team for the first time, we will see CNS nurses, and I know that a metabolic review and a genetic review is also being requested, and no doubt they will also think 'why not kill two birds with one stone'. So, the 3 days that we are at GOSH, I am thinking of operating a ticket system, you know, like you have in clarks, everyone takes a ticket and waits for their number to be called? It will be a full on 3 days, if you factor in a hungry, thirsty, grumpy 3 year old as well. I have 3 'missions' for this hospital stay though. One is to actually get out on Friday. Two is to get some proper advice about Rowan's physio exercises, and ask lots of questions and get some answers so I know what I am doing, and also get a leg to stand on when I am arguing with other professionals. And the third, and most important, is to get something for Rowan's leg pains (which appear to be progressing to back pain as well now). </span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">So, it will be a productive and full on 3 days. In the middle of all this I have my mental health struggles. I always struggle with hospital stays. Usually I am slightly better at GOSH, because we are on our usual ward, with usual nurses, I know where everything is, I know how to get what I want, or where to get it, I trust the nurses enough to leave Rowan. It's my comfort zone. It had to be, I spent 8 months there!! These 3 days, we are NOT staying on that ward. It's on another ward. And while I know it and have been there for day-case things, I am not looking forward to going. I don't know the nurses, they don't know me, they don't know Rowan. I have little ways to cope with hospital stays that our 'normal' ward know, if Mum is in a foul mood, keep the door shut and leave her alone, or bring coffee and toast. I suppose I have been spoilt. So I am going to have to talk to people I don't know (while trying to figure out if they are real or not) and ask for help, and things I need (which I hate). And to top it, I was told last week that I may not (ok probably will not) get a cubicle. The ward only has 2 cubicles. And if there are 2 other children that are possibly maybe infected, they will get those cubicles (understandably). Usually we have a cubicle because you are not allowed to connect TPN in an open space with other children running around. However, this ward has a room now where you can connect the TPN, enabling them to put TPN patients in a bay. (A room consisting of more than one child and parent). The bays on this ward have 6 beds in, with 6 chairs for parents. 5 other screaming children, 5 other parents (which may be Dad's as well as Mum's) 5 other families, which often means a ton of visitors, lots of traffic, lots of people looking and just generally talking. It will be loud and hot, and busy, I will have no privacy, no personal space, nowhere I can just shut the door if it's all too much. No where I can just sit and cry if I need to. I don't trust the nurses because I don't know them. I don't know when these doctors are coming, which days, which order, and we all know sod's law says that the minute I need a break and a caffeine fix the doctors will arrive. It's not the 4 hours I have been waiting for them, it's the 10 minutes when I nip to get a coffee. Rowan will be SCREAMING as he will be hungry, and thirsty and hot, so that's 5 other parents tutting, and wishing you'd shut your child up. </span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">Can you see why I'm dreading it? Is it a situation you'd choose to be in? So yes, I have spoken to my mental health team about getting some diazepam. Losing my temper is not pretty, I have a sharp tongue and I am unable to control my language when I lose it. I lash out, and can be downright nasty. It's not a situation I want to be in, for me, or for anyone else. So I have to think about these things, plan ahead, and think it through. It's going to be a rough 3 days in so many ways. But it's also necessary for Rowan. Rowan's needs come first always, so while I am stressing and having panic attacks and biting my lip trying to breathe my way through the day, I have to advocate for Rowan, and get him what he deserves. This is why I have 'missions' if I can, so that it sort of gives me something to focus on. Sometimes it works, sometimes it doesn't. Fingers crossed Rowan gets a cubicle!</span></div>
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<span style="font-family: "Helvetica Neue", Arial, Helvetica, sans-serif;">No doubt I will blog again next weekend about the weeks events. See you on the other side!</span></div>
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<br /></div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com1tag:blogger.com,1999:blog-6167142684357502205.post-11704664805523777922012-05-18T20:19:00.001+01:002012-05-18T20:19:44.186+01:00A minor blip in the works, hopefully.<div style="text-align: justify;">
<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">I wasn't going to blog today, as I only blogged yesterday, but a lot happened today, well, one phonecall happened today, but it was a major phonecall and it knocked me sideways for a couple of hours.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">I have been awaiting a response from Rowan's consultant at GOSH after a sent a big message on PKB (Patients Know Best, it's kind of like facebook, but for patients and the Gastro team at GOSH, and I use it all the time). I telephoned GOSH yesterday to update them on the local Paediatrician appointment we had had, and I was told I would be receiving a call yesterday. Being a consultant in a hospital often means they can't make calls at the time they say, and as we are also extremely busy trying to find time to talk in either of our schedules can be tricky and it just didn't happen yesterday.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">Basically, Rowan has been experiencing a lot of pain in his legs. He gets very tired, they hurt, he is in bed at 4pm, crying, his legs just 'give out' under him and he falls flat on his face. The more he does, the more pain he is in. I have been chasing pain relief for him for about 2 weeks now. At the moment we are using calpol and nurofen. Normally this is fine, but because he has a Hickman Line, we have to keep an eye on him for infections, and our biggest marker is him having a temperature. With calpol and nurofen, it lowers the temperature, so we won't see if he has a temperature or not, therefore we may miss a line infection, which could be very very serious. But we had no other options.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">We have been chasing for a while, because of hospital politics. GOSH see Rowan for 'gastro' problems and 'endocrine' problems. Not for 'leg pain' problems. So it took me a while to figure out who I needed to hound to get something prescribed for Rowan. It turned out it was our local team. So I started hassling them, there has been a communication error, again, and it would appear one of our local team doctors has received an email from GOSH about Rowan's leg pain, but failed to put it on the system before he went on annual leave, complicating the situation further. We had an appointment yesterday with the local paediatrician. He wanted to prescribe codeine. Rowan's consultant at GOSH said he can not have codeine. </span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">One of Rowan's complications is that he has chronic constipation and gut dysmotility. If we gave him codeine there is a risk that it will slow this down further and he could end up in a HUGE mess. As it is he is on a ridiculous amount of laxatives for someone so small. So it was decided no, and we had a discussion about it, and what potentially could happen, and I agree it's too risky. However, I was convinced there must be an alternative. It's not fair for a 3 year old to be in so much pain from doing something as simple as walking. In bed by 4, crying for 'leg medsun'. How many 3 year olds ASK for bed at 4pm?</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">So, today the phonecall happened. I was so appreciative that she went out of her way to phone me. She could have fobbed me off until the 30th when Rowan goes to hospital for a few days under the endocrine team. Infact, that was what I expected. I either expected a very quick, to the point message on PKB, or to be told we'll discuss it when he's an inpatient. But she didn't. She phoned me. She wanted to ensure that we discussed things properly, that I understood and that I was happier. She also wanted to see how I was, and how our 'social care' situation was. When we were going through the child protection process, between being told I was putting my children at risk, and actually getting to the conference we had a GOSH appointment with the consultant. I was a mess. I cried my way through the appointment, I said a lot of things that she really didn't need to hear, but she was very understanding. Since the child protection conference, people have been a little more wary about piling things on to me to do. Or leaving me months and months with no answers because the anxiety is crippling. It's awful for any parent. So often, people will word things, so that I know there is 'hope' without getting my hopes up. So that I am not left hanging, or expect things that aren't going to happen. I really appreciate the way the Gastro Team handle me, no matter what state I am in at the time.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">Rowan's consultant is aware that I am struggling mentally at the moment, and this is the reason she phoned me. We started off by discussing Rowan's PEG. This is is gastrostomy tube. At the moment it is a long dangly tube, and Rowan HATES it. He requested it to be changed to a button. He has a button in his jejunostomy, so he knows what he wants. Usually the PEG is left in for 12-18 months, but as Rowan asked specifically, he is having it changed a lot sooner. The form has been filled, so it's a case of waiting for the appointment now. I am so pleased that they acted on his request, that he knows that they appreciate his opinion.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">There were several other things that needed discussing. There have been several concerns over Rowan's hypothalmus recently. His temperature drops to hypothermia levels (too cold) and soars to over 40 degrees for no reason. There are a few other 'signs' that have been spotted that his hypothalmus is broken. He has clinical features of this, but really his consultant wants to pin down whether he has a complex problem with it or not. So she has spoken to another Endocrine doctor, and he knows someone in Cambridge who may want to see Rowan. He is a Neuro-Endocrinologist. It all sounded very complicated and I got a little lost, but basically this doctor looks at the hormones produced by the brain. I did feel a bit of idiot, as I didn't realise the brain produced hormones. You learn something new every day! So that is in the pipeline.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">Rowan also needs a liver biopsy. He was discussed at their monthly meeting the other day, and it is agreed that a referral will be made to King's College Hospital, to see a liver specialist. To begin with I was a little confused as to why we were going to King's, as although Rowan's liver is a little bit up and down, it's ok. Basically, the liver holds a lot of vital information. It can show up a lot of different diagnosis' or problems, and seen as there are very few results that Rowan has that are 'unusual' it is the next step. So they will take a little piece of his liver and look at it, and see if they can find anything from it that will help us to help Rowan. While he is there, and under anaestheic for the liver biopsy, they will take a skin and muscle biopsy as well. This is a test that was requested about 18 months ago, but, due to Rowan's poor health, it was decided that there was no point. Now that Rowan is doing so well, it's time to revisit this test. A skin and muscle biopsy takes a bit of skin and a bit of muscle. It can also show up lots of information, from metabolic diseases to connective tissue disorders. This will leave a scar, which I am sure Rowan won't be too thrilled about, but I'm sure we can bring him around somehow.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">Rowan will be re referred to a geneticist. Rowan has been seen by a couple of geneticists in his life, but they never found anything wrong with Rowan. He only had basic tests though, along with a test for 16p11.2 microdeletion (as Cameron has it) which came up negative. Because Rowan was so so poorly and was not expected to pull through, a lot of appointments he 'should' have had, were cancelled, or forgotten, or seen as 'unnecessary in light of the current cirumstances'. This will require more bloods taking, and sending them off for testing, some of the tests will take months and months to come back. They will look at Rowan's DNA and his chromosomes and see if there is anything 'unusual' in them that may explain some or all of the problems he is having. We are always told that just because genetics can't find something, doesn't mean that there isn't a problem there. It's just a box to tick.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">Because Rowan's so complicated, and we don't really have any clue what we're dealing with with him, he is also being referred to a metabolic doctor. They look at the way Rowan metabolises things. There are a lot of metabolic disorders out there. A lot of them are unknown or rare. I think the general feeling is that Rowan may have something like Mitochondrial Disease (please don't google it, it's scary!). He fits a lot of the 'tick boxes' but he fits a lot of boxes for a lot of labels, but doesn't 'quite' fit. It's just another avenue that needs to be explored. As his consultant said today, she wants everyone thinking about Rowan. (Creepy).</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">Rowan has a problem with his vitamin D. Now I knew about 6 month ago that he had a problem. He had an injection of Vitamin D, to boost his levels, and then they increased the amount of Vitamin D in his TPN (Intravenous nutrition). I assumed as I heard nothing else that this had 'fixed' the problem. I was wrong. Very wrong. The huge amount of Vitamin D that he has had, has done nothing to his level. I never really understood the importance of Vitamins and Minerals. I am still on a learning curve. But with a Vitamin D deficiency, it means Rowan's bones are brittle. It doesn't really help that he is walking on his own, but clumsily, and falls over all the time. It puts him at risk of breaking a bone. So we have to keep an extremely close eye on him for any signs of a breakage.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">While we in in GOSH Rowan had a bone age xray. They take an xray of the children's wrists, and from that they can work out the bone age. Basically, for average children, their bone age will be about the same as their actual age. But with children who are growth hormone deficient, or are on the small size, you want a result that is as far behind their actual age as possible as this means they have longer to grow before they reach their final height. Well, I still don't know what Rowan's bone age is, I keep forgetting to ask, but it was identified in that xray that Rowan has very thin bones. Very thin bones that mean easier to break. Combine this with the vitamin D deficiency and we are looking at more 'when he breaks a bone' than 'if he breaks a bone'. Also, because Rowan has had a sudden increase in muscle mass as he is moving about, this may be putting extra strain on those thin bones. We are now wondering if this is what is causing his leg pains possibly. All his bones are thin.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">And so onto leg pain. His consultant tried to leave this until the very end, and I knew that never means good news. There was a big discussion about Rowan's leg pain, and his feel swelling up. There are no options that are suitable for Rowan's leg pain, that won't cause gastro problems. And we can't risk gastro problems, he has enough of those already. I was devastated. How can there be no pain relief options!? We haven't even tried anything! We talked through it, we discussed how we would be able to 'fix' any potential problems, and the fact is, we can't. Rowan is so fragile, that the tiniest change can mean a 3kg weight loss in a couple of weeks, and him being very very very poorly, and he is so difficult to get back to 'normal'. So his consultant said, she would think about his options, and research and see what she can find out for me. She apologised over and over, and I could tell she was as disappointed as I am. She did say that she would speak to our physio at GOSH and see if they had any options. He will be having a hip and leg xray soon, to see if they can see anything there. The focus needs to be on finding out what is causing the pain, once we know what the pain is, we may be able to treat it better.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">So, for now, nothing changes. Lots of hospital appointements and stays are planned, added on top of appointments we are already waiting for. We are going to be very busy. From neuro endocrinologist, to metabolic, genetics, peg change, physio, MRIs, vitamin D problems, risks of breaks, manometry, lung vq, to add to our already huge list, and to add to that, any tests that the new 'teams' want to undertake. For now, it's one day at a time. Planning for the trip to GOSH on the 30th for his Endocrine review. I have a feeling we are going to get bombarded with visitors while we are there, and lots of train journeys to London to add into our already chaotic life. It seems really daunting now, but in a few weeks time, we'll just be getting on with whatever is necessary at the time.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">I had a blip earlier, and I cried. The older Rowan gets, the more problems we seem to find, with even less answers. Have everything crossed that, if nothing else, Rowan gets some kind of pain relief. Right now I am up for any suggestions on how to ease his pain. It makes my heart hurt that he is in pain every day, just trying to do what all 3 year olds do, and his body protesting, knowing that there is nothing I can do to help him. Nothing worse than feeling helpless and useless. It's clearly a reminder that, although Rowan is gaining weight, and developing and doing well, he is a medically fragile little boy. I have been lulled into a false sense of security, I'm sure I'm not the only one. From speaking to the consultant today, it felt like she was as surprised with all these problems as I was.</span></div>
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<span style="color: #674ea7; font-family: Arial, Helvetica, sans-serif;">One day at time.</span></div>MadMummyhttp://www.blogger.com/profile/14215041207269658306noreply@blogger.com0