Sunday, 27 May 2012

Dear Mum in the Playground.

Dear Mum in the Playground,

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.

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.

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?

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.

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.

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. 

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.

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.

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.

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. 

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.

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.

Everyone is completely different, yet the same. 

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.

I hope one day, you see someone else like yourself, and remember.

From, your source of entertainment.


Letting go, just a tiny bit, trying to be normal.

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!

                                                               Ayden, with Sushi!

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.

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.

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 conditioning brainwashing 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.

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.

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.

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.

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.

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). 

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. 

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!

No doubt I will blog again next weekend about the weeks events.  See you on the other side!

Friday, 18 May 2012

A minor blip in the works, hopefully.

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.

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.

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.

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. 

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?

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.

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.

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.

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.

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.

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).

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.

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.

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.

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.

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.

One day at time.

Thursday, 17 May 2012

A label doesn't always mean anything.......

Yesterday we had one of our 'big' meetings.  These are meetings that consist of lots of people with titles.  Social workers, health visitors, mental health workers, portage, nursery etc.  But also a meeting where lots of people are missing who should be there, as they are key to our family.  I could spend hours writing about the negative and devastating things that happened in that meeting, but, seen as I have been told I need to have more of a 'positive' outlook than so 'negative' I am going to steer away from that, and talk about a positive.  It may seem like a small thing to many people, but to me it means everything.

Cameron.  Bug.  He's nearly 7.  The last post I wrote about his Coeliacs disease.  But Cameron has 2 other 'distinct' features about him.  One of those is a 'microtia'.  Which is basically a malformed ear.  He's had it since he was born, it doesn't bother anyone.  He call's it his 'little ear' and while we are under a plastic surgeon who may alter it in 5 years or so for cosmetic reasons, I can't see Cameron opting for the HUGE surgery that it entails (well, 2 surgeries infact).  His hearing in that ear is compromised, and always will be.  It's not even likely his hearing would improve if the surgery went ahead, as we aren't 100% sure he has an eardrum that side.  No one has been able to see it.  It's a 'defect'.  But it makes Cameron unique.  No one really notices it, I have known people for 4-5 years and they've never noticed it at all.

Something else that makes Cameron special is his other special label.  He has a diagnosis of 'microdeletion of chromosome 16p11.2'  it's is a rare chromosome rearrangement.  It's so rare that there is no name for it yet.  The 'medical' definition of this label is as follows.

16q11.2 microdeletion syndrome has been associated with many features. These are likely to range in severity from person to person and may include medical, physical, and developmental features.
The medical concerns that exist for individuals with 16p11.2 microdeletion include an increased risk for seizures and birth defects. If a person has seizures, they may be either mild or severe and may or may not respond to medication, although this is difficult to predict.
A person with 16p11.2 microdeletion syndrome may have subtle, unique physical features. However, it may be difficult for someone other than a genetic specialist to recognize them. Also, although individuals with 16q11.2 microdeletion syndrome have been reported to have physical features that are different from family members, no specific pattern has been noticed in all individuals with the condition. However, one consistent feature is a large head size (macrocephaly).
The developmental features that are more likely to occur in someone with 16p11.2 microdeletion syndrome include autism spectrum disorders and mild to moderate intellectual disability(previously known as mental retardation). Many individuals will have a delay in expressive language, which often exists regardless of a diagnosis of autism. Individuals with 16p11.2 microdeletion syndrome are also prone to neuropsychiatric disorders including attention deficit hyperactivity disorder (ADHD), bipolar disorder, and schizophrenia. It is thought that up to 1 in 1000 people with a language or psychiatric disorder will have 16p11.2 microdeletion syndrome. Additionally 1 out of 100 people with an autism spectrum disorder will have this condition.
16p11.2 microdeletion syndrome is a rare condition that has only recently been characterized. It is difficult to pinpoint just how often it occurs because there is a wide range of disability and some people with milder symptoms may not be diagnosed. 16p11.2 microdeletion syndrome is estimated to occur in 3 out of about 10,000 people.

Now, reading that, I was horrified.  I read a lot of things like this when, at the age of 3, a letter plopped onto the doorstep.  It made me feel so sad.  Cameron seemed to fit every single thing of those above.  He showed signs of an Autistic Spectrum Disorder, he had no speech, he was developmentally delayed, about 18 months behind, he has seizures.  It wasn't looking good for him.  It took me a little while, but I just accepted that this was the way it was for him, and all I could do was push him to be the best he could be.

Starting school Cameron struggled, his speech was struggling, he was frustrated and so far behind at school.  He was little as well.  Then we had Rowan and his whole life was turned upside down, and our focus had to change for all the children, from pushing them to achieve, to holding their heads above the water.  He was still struggling at school.  Then Cameron got to year 2.  I was dreading it for him.  It all moves from 'play based' learning to 'proper' at a desk, writing, reading, and I was worried he was going to fall further behind and end up with more self esteem issues.  Cameron has always had confidence problems.  Always.

I went to the first parents evening of year two, and we talked about how far behind he was, and we discussed ways to help him.  Both his class teacher and us decided that rather than pushing for results and not getting them from him, the best place to start was to boost his confidence and self esteem and teach him that it was OK to not be 'right' all the time.  So we dropped his spelling list from 10 a week, to 2.  He suddenly started to get 2 right a week, instead of 0.  The big grin on his face that day he came home with 2/10 I will never ever forget.  My boy did it, and he knew it.  He was proud of himself.

                            Cameron won 'scientist of the week' at school!

From there, we took one baby step at a time, he started to read one word per page of a book.  It was painstaking, but he did it.  His self esteem and confidence being more important than the achievement.  Another milestone from Cameron was when he got a bronze certificate for reading 3 books in one week!  Considering at the beginning of the year I couldn't get him to look at a book while I read it even, it was a HUGE improvement.

So, a few weeks, I noticed Cameron was playing on his laptop.  He was playing a numeracy game.  There are cars, and he is playing against other people (or so you're led to believe). A sum pops up on the screen, and you have to type the answer, the more correct answers you give, the faster your car goes.  He found it all by himself.  He showed me how.  He used google.  He typed in 'car ading gam' well google corrects your spelling, so up pops 'car spelling game'.  He worked out that by trying, you can get something back.  He also excelled at these 'sums' and he LOVES the game.  He also started reading signs and posters.  There is a 'no fishing' sign in the lake near our house.  He stood there and said 'that sign says no fishing'.  Yes it does darling.  Then today, he was reading the packages of food.  Such a huge achievement.

I sat in that meeting, with all the shit around me, I'd had an awful day already, the meeting went on for a ridiculous amount of time, but the headteacher started talking about Cameron.  This year is 'SATS' year for him.  He is predicted......2c in reading and writing and 2b in maths.  For those of you who don't know what these means, 2c is just a smidge below average, and 2b is average.  He is confident, he joins in discussions at school, even if he's got the wrong answer he will proudly wave his hand in the air.  He comes home from school happy, he has friends at school, LOTS of friends.  He WANTS to go to school, he misses it when he has to have time off for appointments.

Cameron smashed that 'developmental delay' diagnosis to pieces.  He no longer is being looked at for autism or autistic spectrum disorders, he still has seizures, but they are getting fewer all the time.  His chromosome deletion makes it harder for him to learn, but he battles his way through, sticking two fingers to the world who told him he can't, or he won't.  HE CAN AND HE WILL.

Today we popped to the hospital for an appointment, and afterwards we went into a BOOKSHOP.  I think it's quite possibly the first time EVER I have taken Cameron in a bookshop to find a book for him and not Katrina.  He absolutely loved choosing a book for himself, so much so infact he got two.  He showed us today that he can read these books.  The books he chose are from the 6-8 section of the bookshop.  His reading age is 7.  He isn't 7 until June.  I told him he got books today because I loved that he wanted to read, and I wanted to share that with him.  He also got books today because I was so proud of him.  And he replied 'and I am proud of me too Mummy'.  So you should be Cameron.   So you should be.

The odds are stacked against Cameron, with his physical problems, and his genetic problem.  But he is proof that just because you have a label, does not mean that you know a person's future.  I know a lot of people who's children have the same deletion as Cameron, and they are the opposite of him.  While they share the same 'label' the spectrum of issues these children have is massive.  Is Cameron lucky? Possibly.  But he had to fight for it, every step of the way, and he is winning, not only that, but he is happy winning.

A child is the same child whether s/he has a label or not.  Don't let a diagnosis define the person.  Look beyond the label and see the person underneath.  It's not a life sentence.

           Funky dude, SO proud of his 'latex free' gloves that he was given at GOSH

Monday, 14 May 2012

It's only a diet.....right?

This week is 'Coeliac awareness week'.  There aren't many 'awareness weeks' we can be involved in, but this is definitely one that we can raise awareness for.  Coeliacs disease, more recently, has been viewed as 'just a diet', the 'diet of choice' when trying to lose weight.  So many people have decided to go 'gluten free' that sometimes people misunderstand the real meaning behind being a coeliac.

Coeliacs disease wreaked havoc on two of my children's health.  And without following the strict diet plan, they end up very ill. 

Cameron was 6 months old when we noticed he started having problems gaining weight.  Up until that point, he did quite well, he was never huge, but he was making progress.  We hit 6 months old and all of a sudden he didn't grow.  He was lethargic, and grumpy, acted like a child who was starved, and to many people, that was what they thought he was.  I was 19 when I had Cameron, and I already had Katrina who was 3 by this point.  Cameron LITERALLY acted like I never fed him.  I was accused by very close family members of not feeding him.  It was horrible to be accused of denying your child the thing they need in order to survive, let alone be accused by someone that close to you.

Even now, people don't understand.  Cameron has had the blood test for coeliacs disease and it always comes up negative.  Even when he was eating 8 weetabix a day for breakfast.  It's not commonly known that you have to be eating quite a large amount of gluten in order for the test to be accurate in the first place, but sometimes even that isn't enough.  It isn't for my boys.

Because of the nature of Cameron's rare coeliacs disease he needs short courses of high dose steroids a couple of times a year.  He also can not eat wheat/soya/dairy or eggs.  He is not lactose intolerant, it is in fact the protein he can not process, as the body processes these proteins in the same way it does with gluten.

So, what is Coeliac's disease.  I'm sure there is some fancy way of putting it, on Wikipedia, but the way in which I understand it (and explain it to my children) is this.  In your digestive system there are lots of Villi.  These look like fingers, and when you eat, all the good bits of food go between the fingers and are absorbed and help you grow and be healthy.  When you have coeliacs disease, the gluten fills up the holes between the fingers, and makes the surface flat, so none of the good stuff in the food is absorbed, it just rolls over the top.  And when you don't get any of the good stuff from food you don't grow, and you feel sick and tired all the time, and it makes your stomach hurt.  When you don't eat the 'bad stuff' the holes stay open.

OK so it's very basic, but I'm sure it's basic enough that people understand.  So, how does this affect our lives.  Well, like I have said 3 out of 4 of our children (all the boys) are on 'the diet'.  It sounds simple doesn't it?  The boys can not eat, bread, cakes, pasta, yogurts, cheese, milk, chocolate, ice cream, donuts, sausages, burgers, pies, rice pudding, pizza, pretty much anything that is processed.  So, what do they eat?  Well a lot of rice based foods, and corn based.  So they have corn pasta, and rice milk, sometimes rice pasta, rice noodles.  A lot of food we have to make from scratch.  No 'shove it in the oven' stuff.  Oh and to make it harder, it's not as simple as 'they can have tomato sauce' it varies brand to brand.  The supermarket shop, used to be a nightmare, and still is sometimes when brands change their recipies, the 'new' you see stamped across packaging, isn't always a good thing.  Or if there is not enough demand for a product in your branch, they will just stop stocking things all of a sudden.  So, tonight, my boys had a treat.  Ayden actually told me I was the 'best cooker' because I made them pizza.  I substitue EVERYTHING.  From flour, to eggs, to the cheese on the top.  And it's not 'just' a diet.  Anything that is contaminated by gluten, also makes them sick.  So, if we are making Spag Bol, we have the mince in one pan (which is 'boy friendly, and we all eat it), then 'our' pasta in one pan, and 'boys pasta' in another pan.  I can not stir our pasta, and then using the same spoon stir the boys pasta.  That is contaminated.  We have two toasters, for the same reason.  Contamination.

The boys are very good with their diet, they know what they can or can't eat, but sometimes even I get a little shocked what companies put flour in!  They do suffer though.  They miss out on parties.  Either because I am not confident that they won't get 'glutened' or because they aren't invited because they are the 'kids with the weird diet'.  They can't have birthday cake.  Infact my boys have never had a birthday cake.  We can never go for a day out and assume we will be able to just 'grab' something to eat.  It doesn't work like that.  In order to eat out, you have to trust the chef of wherever you are going, and MOST of them don't understand.  They think you can just 'scrape' off the gravy, or 'brush off' the crumbs of the bun they forgot you didn't want.  It isn't worth the risk.

We got used to the diet pretty quickly with Cameron, and the difference in him was amazing.  It took a little while for us to work out what exactly needed excluding, but once we got our heads around it and got stuck in, the hassle was worth it when you saw the difference in Cameron.  While this was happening, I was pregnant with Ayden.  We asked what the likelyhood was that he would be affected and we were told probably none, the form that Cameron has is so rare, that it's highly unlikely we would have another one.  They were wrong, very wrong.

Ayden was born, and everything seemed fine.  Infact, he thrived.  Very well.

He was fed on breastmilk only.  He always seemed to be hungry, but then, often babies are.  It was so nice to see him feed well, and gain weight very well.  He met all his milestones, and was happy and content.

This was Ayden at 3 months old.  HUGE.

Then we started weaning.  We didn't really think twice, weetabix for breakfast, afterall that's always what is recommended isn't it, after baby rice?  So that was what we did, and within a week, the signs were there again.  He was grumpy he would constantly scream, he wouldn't sleep, they blamed colic.  I blamed colic, but something nagged at me.  Then the weight started to fall off.  No one would refer him to the man who diagnosed Cameron.  They kept saying the statistics were impossible.  No one would believe that it was possible he had the same Coeliacs as Cameron.  They made out I was putting my mental health over Ayden's needs.  They were trying to blame me again.  We were in and out of hospital with him, trying to find out what was wrong.  No one would listen to me, all the signs were EXACTLY the same as Cameron.  Ayden went from FAT to.....well......see for yourself, in 4 months this is what happened.

No one could believe it was the same child.  He would eat and eat and eat and eat, and yet still he would lose weight.  We took Cameron to his appointment at GOSH, we couldn't take any more.  Ayden came with us, and GOSH took one look at him, and demanded a referral.  From there, aged 11 months old, weighing 13lb, we were rushed through.  We were asked what we thought the problem was.  WE were ASKED what WE thought.  FINALLY.  So I wasted no time in diagnosing him myself.  We were told how unlikely that was, but it was agreed they would test for that first.  So, a few weeks later, Ayden has his endoscopy, colonoscopy and biopsy.  A couple of weeks after that, the verdict was in.  Infact, it couldn't wait for an appointment, we got the results from the consultant over the phone.  He had the same coeliacs as Cameron. 

So, out went the dairy, the soya, the eggs, the gluten, and the wheat.  In went an NG tube, because by then he was so exhausted and feeding was so tiring, that he was struggling.  He was on a regime of 2 hourly feeds, whatever he didn't drink, went through the tube that was in his nose, into his stomach.  Effectively he was force fed.  He also needed a few doses of steroids to kick his body back into shape.  But it was worth it.  He went from skinny.  To overweight.  It took it's time, but it worked.

So, no.....Coeliacs disease is not 'just' a diet.  It ruin's lives, it affects all different people, all different shapes and sizes, all different ages.  1 in 100 of us has coeliacs disease, but only 10% of people know they have it.  The average amount of time for diagnosis is 13 years.  We have been very lucky, we still have our boys, but, due to a 'diet' we nearly lost them both.  If they are 'glutened' now, we know about it, and can usually pin point the problem and eliminate it.  It's a 24/7 job, from making sure there are no crumbs on the floor, to making sure you wash up properly.  Making sure the worktops are spotless, to checking you haven't used the cutlery already.

Coeliac UK this year are asking people to take the challenge.  Can you go a whole week eating like our boys do?  Give it a go, and see what they have to live with.  Then remember they are 3, 4 and 6.  And yes, it's difficult, but it's what they have to do to live.  It's not a choice, it's not a fad, it's not a way to lose weight.  They aren't being picky or fussy, and we are not being over protective, pain the backside parents.  It's a medical condition.  Look what it did to Ayden, the pictures speak for themselves.

We have Coeliac disease, but we don't let it stop us.

Sunday, 6 May 2012

I'm a big boy now.

It is official, Rowan is now considered a 'pre-school' age child.  I have never really considered the fact that Rowan was a toddler, between the age of I suppose 18 months and 3 they are considered a toddler.  No one ever referred to Rowan as a toddler, maybe that's because he never 'toddled' or maybe that's because there were other things we needed to focus on.  So it hit me hard when, on the 26th April 2012, I realised Rowan was no longer a baby, he is now considered a 'preschool' child.  That is scary.  Along with teaching Rowan to tell everyone he was 3 when asked how old he was, we also started to teach him that he was a big boy.  He may be small in size, but he is big in so many other ways!!

3 years ago, Rowan entered this world, and I suppose we should have known from day one that he was never going to be a stereotypical child.  After all, Daddy had to deliver him on our bathroom floor, no paramedics, no midwife, just me, Lee, and a man on the end of the phone.  We were expecting a girl, we had several scans which all stated that we were having a girl.  We had a girl's name, Keeva Taryn.  He very definitely isn't a girl and he did not want to be born in hospital.  Unfortunately, because I have a care plan because of my mental health, and because we had a social worker, and because Rowan was cold, we had to go the hospital still.  I didn't want to go to hospital I would have been more than happy to curl up in my bed with my new baby.  We had no boys names.  But we chose the name Rowan, Lee picked out a few names a few weeks before, as we were trying to chose a name for the 'baby' we started looking at all the names.  Rowan means 'little red one'.  Rowan, despite having a very low temperature when he was born, was extremely red.  Even the midwife commented on how red he was, lobster red.  So this name seemed to fit him perfectly.

                                                      Waiting to go home from hospital

To continue from my last post, I just want to point out a few ways that I was discriminated against, because of my mental health.  I came off all my meds when I was 34 weeks pregnant so that the 'baby' wasn't born addicted to my medications and go through withdrawal.  Anyone who knows me, knows that 'med free' and me, don't mix too well, combine that with pregnancy hormones and it's a recipe for disaster.  Despite all this I was determined that I was going to make it through, for my baby's sake.  What I didn't mention was that I spent 18 hours on our maternity ward, while I was in start stop labour, 5cm dilated, waters already broken 24 hours before.  I have VERY quick labours.  I was getting agitated on the ward.  I have to be told EXACTLY what is going to happen and when, or I start losing it.  Well I was just left to it, and I started to get irate.  This was written in my care plan, that this happens (it happens even now, and I'm on meds but that's another story).  About 6 hours in I am ready to kill someone, so Lee approaches the midwife, and explains the situation.  No one had even opened my notes, or looked at my care plan.  And people wonder why I have never written a birth plan!!  Anyway, once it was pointed out, the midwife started to talk to me like I was an idiot.  This is my biggest problem, I have a mental health disorder, that does not mean I am stupid, or an idiot, or deaf!  Eventually they moved me to a ward, and told me to 'stay there'.  A man came in, I don't know who he was, or what his name was, but he came in and removed my 'glass' and gave me a plastic cup.  'For your own safety' was what he said.  I was in shock to say the least.  I self harm.  Now, I'm not going to get into it, but I can do as much damage with a plastic cup, as I can with a glass cup, if that is what I want to do!!

So they let me home, 5cm dilated, contractions every 7-8 minutes, told me I had ages to go, and sent me home, in a taxi, on my own.  I lost my temper, and told them there was no way I'd be back until after I had had the baby.  I was just angry I didn't mean it, but that was exactly how it happened.  Rowan was born at 23:40 on 26th April 2009.  It was a Sunday, by the time we got to the hospital it was the early hours of Monday morning and by the time I was on the ward with Rowan it was 6am.  They made Lee go home, as he couldn't be there until 8am.....I suppose rules are rules, but really it was a little ridiculous. 

At no point in my care plan that was forwarded to the ward does it state that I am at risk, or my 'baby' was at risk.  It simply states that they need to inform the social worker and the community mental health team upon delivery of the baby.  I had two prescriptions already written to start back on medication.  One for if I breast fed, and one for if I didn't.  So at 8am I started hassling to go home.  I am not good in a hospital, I am not one for 'rest' I need to get up and get back to normal, I just had a baby, I'm not ill.  But no, the midwives kept going on and on and on about my 'mental health' and they needed to make sure we were both going to be safe, and I couldn't go home unless the social worker and my mental health worker said it was OK and it was safe etc etc.  It was a joke!  I was crying down the phone to anyone who would listen.  The longer I stay in hospital, the more ill I get mentally so I just needed to go home.  In the end the only way that i managed to get to go home, was if I had a welcoming party of professionals when I walked through my door.  Is there anything worse than going home, to now 4 children, one of whom had a broken leg, a health visitor, a mental health worker, some friends, and a social worker.  That was the ONLY way they would let me go home, even talking to them on the phone wasn't good enough, they wanted me to have risk assessments.  And why? Because I have a label.  I had never had a history of mental health problems immediately following childbirth, I was exhausted (which impacts on mental health) and I just wanted to go home and go to sleep with my children.  Anyway I jumped through all of their hoops and I was finally left alone.

I supposed from then I should have realised things were never going to go to plan!!

Rowan's first birthday was spent in our local hospital.  He had spent most of the first year of his life in hospital, and he considered it home.  He knew no different.  So while we devastated that we couldn't even have that at home, in hindsight it was very fitting to spend such a huge milestone with those who helped him get that far.  We did have a little 'party in the park' for him, but he was so poorly and so tiny, he didn't appreciate it.

                                     First birthday in hospital, all the presents from the ward

His second birthday, we FINALLY had him at home (just, he came home from 8 months at GOSH 2 weeks before his second birthday).  I got very upset as we tried to organise a party for him (considering 6 months before we were told he wouldn't make it to see his birthday, it was a HUGE deal for us) but no one was free, or was going to turn up so we cancelled it, and just spent time with him.  He was still fragile and poorly but he was spoilt rotten!
                                                 Rowan with his present from his friends
So, now his third birthday.  We did not even attempt a party.  I wouldn't know who to invite to be honest.  So we just decided we would celebrate it on our own.  The big 3 kids were at the childminders all day.  Rowan went to his childminder in the morning, he took a cake and celebrated at the group she takes him to.  He came home and had his presents, an art table, DVDs, a trampoline, Lego, puzzles, etc.  He played on his own for a bit and then had a sleep.  We something special for dinner, and he went to bed.  Nothing special, but it was nice.  Next year will be the big celebration, he will be 4, he will have been to nursery for several months, he will have FRIENDS to invite!!!

                                                       Rowan on his 3rd birthday
So, now that Rowan is a preschool age child, I have started to realise all the things he can't do, that an 'average' 3 year old would now be doing.  OK, so he is still only take a few steps here and there, and this is causing him huge pain, resulting in fatigue as well.  Two nights so far this week Rowan has been in bed by 430pm, moaning in pain, dosed up with pain meds, and a DVD.  For a little while now I have noticed how many people view Rowan as a baby because of his size, and how many people treat him like a baby still.  He used to shout at people, now he is accepting it.  And that is not good.  Children at nursery when I take Ayden up, call Rowan a baby.  Ayden is very good and stands up to them and says he's not a baby, but this is how children see him, and will automatically ignore or exclude him because he's a 'baby'.  He is far from a baby!!  When Ayden states to his friends that Rowan isnt' a baby, the first thing they all say is 'he's in a baby buggy'.  And how many of us have said it, 'you're not a baby, you don't need to be in a buggy, you can walk like a big boy/girl'.  I even do it now to Ayden!  So of course other children see Rowan as a baby.  He can't walk, he is in nappies, he has a buggy, and he doesn't really talk outside the home.  I am not prepared to accept that.  So, I need to change as many  of those things as I can, in order for Rowan to feel he is a 'big boy'.  So, starting with the nappies, Rowan has a potty (two in fact).  Now, pants, underpants......for a small child.....roughly aged 6-9 months (he has no bum).....impossible.  The smallest we have found are 12-18 months, they are obviously mickey mouse (seen as they had those) and my job is to make them smaller to fit him.  Once i have done that, we are going to attempt potty training.  Number two, talking outside the home, well we are already working on that, and it's a 'no pressure' technique, so there isn't much I can change about that.  Walking, well I can't change that for him either, unfortunately.  Now the buggy.....can I change that....YES I CAN.

A little while ago an Occupation Therapist came out to look at Rowan, and she stated that she did not like the way Rowan sat in the buggy.  He sits on the bottom of his spine, and the straps sit on his Hickman line and his feeding tubes, and the only way to get him to sit properly in the buggy was to literally pull the harness so tight he couldn't move.  Well then all his lines dug into him, and caused pressure sores.  So that wasn't an option.  But there was never anything that anyone could do.  This OT however, told me that he needed a referral to wheelchair services for a pushchair that he sat properly in.  This didn't happen, because then we swapped OTs, and the new OT said that everything was fine, he sits like every other child in a pushchair, and although it's not ideal 'it will do'.  Well since when as 'it will do' been good enough for anyones child?!  I was prepared to accept it 'will do' for now, and hope that he wouldn't be in the buggy for much longer anyway.  However......Rowan, a year later, is only taking a few steps here and there.  He uses his Kaye walker, which he loves!  But the more he walks, the more pain he is in, and the tireder (I'm sure that's not a word) he becomes.  We never factored in pain, or the extreme fatigue, into his life.  Who would ever predict, that something as simple as a 3 year old walking, would cause such huge problems.  He is on gabapentin, paracetamol and nurofen most days now, he is in bed extremely early, he cries in pain, and some nights no amount of pain relief or massaging helps.  As a parent, seeing your child in pain is one of the worst things you can see, knowing there is nothing more you can do for them.  I need to fix this.

                                                         Rowan and his big attitude
So, in order for Rowan to be independent, he needs to be able to move about to explore things, and investigate, and he needs to be able to do that on his own.  He is going to nursery in September, when I know his pain and fatigue will peak, as he will need to be more active.  That is the case with EVERY child, not just our little superhero.  When he's in pain, he's tired, and moody, and doesn't want to know anyone, and nothing is good enough for him.  How can I get him independent and as pain free as possible.  I wasn't sure, so I started asking around.  One of our professionals said to us to bear in mind, that with his current ridiculous amount of 4500 calories per day, as his activity increases, as does his calorie requirement and we're maxed out on calories and fluid.  It was also said that we could possibly find a way around this problem, but we needed to be aware.  Then Physio said we need to limit his activity to prevent him causing himself too much damage.  Suddenly that trip to soft play, and then toddler group afterwards, which should be such fun for a 3 year old, turns into torture, and it makes my heart hurt.  Another one of our professionals, mentioned a self propelling wheelchair.  He could move himself, burning less calories than walking, less pain in his legs, but he can be pushed when he needs to be, he would be independent from us, he would 'look' like a big boy, and in turn this would make him 'feel' like a big boy.

                         Asleep, in bed, at 430pm, after calpol, nurofen, gabapentin and massaging.

So.....who makes wheelchairs small enough for someone who is effectively the size of a 12 month old.  12 month olds are still in buggies, or special needs buggies.  And the hunt began.  I started asked people who I knew had small children in wheelchairs.  5-8 year olds, and went from there.  I emailed manufacturers and NO ONE returned my emails.  I think mainly because they are all foreign (mainly German!!).  My searches brought me to 3 wheelchairs.  Ottobock Bravo Racer, Meyra Brix or Mex-x, or a Youngster 3.  I still wasn't sure these went small enough.  Then, someone I know, told me to go to Naidex, and ask.  I had nothing to lose.  For those of you who don't know, Naidex is a disability roadshow.  Like the 'mother and baby' ones, where you look at buggies and swings, and bottles and all the new gadgets, but for disabled people.  It was at the Birmingham NEC.  I registered and booked our free tickets, Lee, Rowan and I took the 45 minute train ride to Naidex, and it was the best day of our lives so far.

Ottobock was the manufacturer I was after.  I don't know why them specifically, but there was something that drew me to them.  We wandered around for a while, we watched a fascinating talk on sensory equipment from everyday shops, using everyday items mixed with a few 'more specialist' items.  We learnt about portable sensory environments using projector umbrellas, and we will definitely put these hints and tips to use!  Even if it doesn't work for Rowan, there are plenty of 'meltdown' situations in our house that would benefit from a 'chill out' and I'm not just referring to the children!!  So we hunted for the Ottobock stand. As we were leaving we found a map of where everyone was, but hey it's much more fun to hunt!

You know you see adverts, where you see someone, or something and a light comes from heaven and lights it up!?  That happened to me.  Ok we can probably blame psuedo-psychosis, but anyway, the point was, amongst all the amazing wheelchairs they had out on display, there was a tiny wheelchair, orange frame, with a clown face on it.  I was drawn to it.  I was carrying Rowan, as he has decided he doesn't like to be in the buggy, especially in loud/busy places, which Naidex was.  I walked over to the wheelchair, I had never seen something so tiny.  I bent down with Rowan, and he stood up, leaning on me, just looking, and said 'wheelchair'.  We asked him if he wanted to sit in it, and he said yes.  We put him in it, and he was quite happy, until the staff realised and all came descending on us to offer advise and ask questions, and suddenly he wasn't so happy.  It had nothing to do with the wheelchair, it was the pressure of people making a fuss.  We talked to the guys from Ottobock for a while, explained our situation, and they agreed with us.  Now, you could say that they would agree, because they are trying to sell a product, however, without any prompting from us, they listed all the advantages for Rowan having a wheelchair.  Then came the tricky part.  The lady asked us if we would be looking at charity funding, or if we would be self funding.......

                                                  Rowan in the Bravo Racer, by Ottobock

I had investigated charities, and enquired.  They all wanted a supporting letter from OT or Physio.  In theory that should be fine, he isn't walking, he is 3, he doesn't sit properly in his pushchair, but neither physio nor OT would write us that letter.  So we had decided that if he needed it, we would save up, fund raise, anything to get our superhero what he needed and deserved.  So we explained this to the lady and she asked us to come back, there was a man she wanted us to see, but he'd had a blow out on the motorway.  We did just that, unforunately he wasn't going to make it.  We put Rowan back in the wheelchair so we could look again.  So this lady (I so wish I had asked her name, but I think she was called Jo) asked us if he would be happy to stay in the wheelchair and be pushed to the other end.  Confused, we said yes, and pushed him the length of convention, to a stand with MIDSHIRES written on it.

This is where the moment happened.  We met a man called James.  We were talking to James about our situation, and we were talking about the benefits of children like Rowan being in a wheelchair.  While we were talking, out the corner of my eye I could see Rowan moving one wheel back and forth with one hand.  James said without a doubt Rowan needed the wheelchair.  He is the supplier that covers our area.  He also said he is 100% sure we could get funding for it from a charity.  We explained that we could not get a letter from OT or Physio.  James said he hears this all the time, and there is a reason OT and Physio will not write you a supporting letter.  If they put on a piece of paper that your child needs a piece of equipment, they are obligated to provide it.  Therefore no one will recommend Rowan needs a wheelchair, because then they will need to provide him with it.  The way to get around that, is that we can get a supporting letter from any member of Rowan's medical team.  Result!  James measured Rowan up, and is doing us a quote, they will help us with the charity forms, and applications, there may be some publicity required from us, he took a picture of Rowan in the wheelchair.  The lady from Ottobock was an OT and she said she would write us a letter in a heartbeat, but because she works for Ottobock, she can't.  The wheelchair he was in, was brought over specifically from Germany, they do not stock them that small in the UK.  Like I said, James has said that by July, we should have someone to fund the Bravo Racer for Rowan.

As if that wasn't exciting enough, and amazing, that everyone agreed this is what Rowan needed and deserved, that it would improve his quality of life, so he can join in activities even when his legs are sore, and muscles give up on him, give him more opportunities to rest those legs, while keeping up with his peers, giving him independence, that he can run off in tesco, or more roll off in tesco, like every toddler does, knowing that he won't end up in so much pain, or flat on his face, or potentially breaking a bone or causing lasting damage.  Or amazing enough that so many people went out of their way to help us help Rowan, Rowan decided to amaze us once again.

James turned Rowan, in the wheelchair, around.  He asked me to go and stand the opposite end of their stand.  He then told Rowan to 'go get Mummy' and Rowan just looked at him.  It would appear I wasn't the only one noticing Rowan playing with the brakes and the wheels.  'Go give Mummy a kiss' he placed both hands on the wheels, had that look of determination in his face, and pushed both wheels, he moved.  The realisation on his face of what he had done, and he did it over and over he reached me and got that kiss.  I was in tears, Lee was in tears.  How embarrassing.  Rowan had a HUGE smile on his face.  'I did it'.  He then worked out, by holding one wheel, and moving the other, he turned around, so he turned himself around, manoevered himself around another lady in a wheelchair, and moved himself to give Daddy a kiss.

It's like watching your child take their first steps.  Only better.  I was worried, putting Rowan in a wheelchair would be too much, that all I would then see was a wheelchair, a disabled child.  But that is not what I saw, I saw a big boy, moving himself, it was enabling him to experience that which every other 3 year old experiences, pain free, not burning hundreds of calories, not risking breaking one of his very fragile bones.  Rowan isn't and won't be confined to a wheelchair.  It is merely a substitute for the buggy, or for days when his pain is just too much.  It is not a step away from progression, it's a side step.  Rowan takes lots of side steps, as well as steps forwards and backwards.

                                                  What do you see, disabled, or enabled?
Rowan will be seen terrorising customers in tesco very soon!  Rowan.  Officially a big boy.