Best Holiday Experince So Far!

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!

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.

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.  

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!

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!

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'.

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.

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.

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!

Cameron meets Michaela Strachen!

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.

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!)

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.

Have IVs, will travel!

         

Not everyone is a morning person

Everyone can be themselves!

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'!

                                                                                                                                  

       

Clinical Errors.

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.

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.

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.

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.

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.

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.

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.

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.

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.  

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.

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.

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.

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.  

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.

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.

The picture from the surgeon, his gastromstomy button (the very circular thing at the top)

 and then his stomach, the pale pink thing underneath.  The gastrostomy 

is meant to be INSIDE this.  (ignore the scalpel!)

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.

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.  

Jo and Steve came to visit and really cheered me and Mummy up, 

and despite some incredible pain, pulled funny faces with Jo :o)

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.

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.

Rowan bowling, in his wheelchair, soon after we came home                   Rowan meeting a Beefeater at the Tower of London,                                                                                                                                      after the Believe in Magic Christmas Party.

Rowan's bag, that he now takes everywhere with him.

Goodbye Childhood Hero

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.

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)

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.

The few things I have seen recently, that made me sad are as follows

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.  

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.

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.  

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.

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.

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.

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.

Sorry for the absence!

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.

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!!

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.  

We found those magic wants you are all looking for!

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.

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.

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'!

 We went to a Pirate Party at Hamley's!!

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.

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.

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.  

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??

Trip out of the hospital for a 'offee' with Mummy (ok his is tea)

 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. 

Somedays the pain wins.

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.

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.

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:

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.

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.  

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.

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.

Ayden had his face painted as Batman!

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.

Rowan has new 'Mr Tumble' wheelchair gloves!

Cameron was evacuated! And LOVED it!

Katrina had her face painted at the 'Believe in Magic' party!!

Latest addition to the madhouse......

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.

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........

DOMINO

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.

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!!

So here are the pictures of Domino's trip to the hospital.

First we had to sign in, and then we have to wait to be called.

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.

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.

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.

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!!

                                         

  A Rhino, depicting the Balloon Festival that is in Northampton every year.

Domino couldn't climb onto this one, there was nothing to hold on it, and it was so tall!

  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.

Rowan helped Domino climb onto the back of this Lion for a picture.

                             Oh that is a lot better, a tiny gorrila, much easier to climb onto!

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)

This is Rowan's favourite animal in town.  We decided though that the Rhino needed more Spots.  Lots of animal prints all in one.

We thought we lost Domino, but no, she was sunbathing on the pink flower Rhino, phew.

It had been a busy trip to town and both Domino and Rowan were very tired!

Goodnight Domino and Rowan, sweet dreams!

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.