Poorly William :(

The past 2 weeks have been really tough for poor William - and us!  Where to start?

Well firstly William got quite a bad cough about 10 days ago and as he was coughing so much he was then vomiting -  we ended up taking him to the hospital incase it was a chest infection. His chest was clear but the doctors were worried incase it turned into something so they put him on antibiotics. 

They also noticed an infection in his gastrostomy site so he was put on another antibiotic for that at the same time. 

As usual the antibiotics gave him horrendous diarrhoea (can't spell that sorry!) which resulted in his poor little bottom becoming bright red and sore to the point that it was weeping and he was screaming in pain. Sudocreme etc just didn't touch it. Add this to the fact that he was still coughing and vomiting and back we went to hospital on the Wednesday.

They changed his antibiotics as the original one clearly wasn't helping but again his chest was clear!  That afternoon we had an appointment with the orthopaedic surgeon but I'll fill you in on that later on.

So back home, William now on different medication and still coughing, still vomiting and still very sore bum.  Following day he was much the same but we were due to go to a wedding in Crawley, myself and Kev got ourselves dressed up ready while William was having his nap only to find his fingers bright blue when he woke up which was worrying, and then yet again he vomited and poo'd everywhere. Clearly something really not right so I phoned the hospital and was told to bring him straight down!

So out of the wedding outfits and into the car we go.  End up on Beach ward for the 3rd time in a week and this time see 2 more doctors who again say his chest is clear and advise us to take him off the antibiotics before sending us on our way!

Poor William was due to be the star attraction and turn on the Christmas lights in east preston that day but he was too unwell to go :(

It's now 5 days later and his bottom is much better and not as red and sore as it was but he is still vomiting and now it's not just when he coughs - it seems to be during or after almost every meal which is not good as he is clearly losing weight now. So if things don't change I guess we will be back down to the hospital again in the next few days!

So back to our visit to the orthopaedic surgeon... We were referred there are Williams last hip x-ray showed his right hip was starting to move out of place. This is quite common in children with CP who aren't weight bearing etc. We went to the appointment expecting him to have a quick look and say they would keep an eye on it so we were both rather stunned when he said it was already out and he would need to refer William to The Evelina Children's hospital in London as he is likely to need major surgery to correct it. 

William should have been weight bearing since the age of one and as yu may have gathered from previous blog posts, he hasn't been able to ad his standing frame was unsuitable for him and despite constant requests still hasn't been changed or adapted for him. He has probably only been able to stand 5-6 times in 2 years. It makes me really resent the Physio service at Worthing hospital as it was such a rush to get him a frame and it was very important at that time but as soon as we had one, no one could give two hoots as to whether we could use it.  Seems like they were just covering themselves - well in this case it's backfired hugely hasn't it. 

So now we just wait for the appointment for the Evelina but in the meantime he can't weight bare at all so no kneeling, standing etc just sitting in his chair. Although I think that's all the physios actually want all the children to be able to do round here. 

Anyway, that's all rather grim so how about something to cheer us all up after that???  

William did manage to roll over last week, he did it on his own with me just telling him what to do.  I didn't touch him at all just encouraged him and told him to move his arm / bend his knee etc etc. When he managed it he seemed rather shocked and didn't really know what to do nice he was there!!  He hasn't managed it again on his own yet but that might be because he's been poorly.

I'm sure more has happened in the past few weeks but I seem to have just been faced with vomit, poo and a huge pile of washing so I can't remember much else!

Another update soon!

EEG results???

Well last weeks EEG wasn't great. William was given melatonin to make him go to sleep but William being William he stayed awake throughout!

He did have a seizure whilst the probes were on so we presumed that would record some seizure activity but we have since had a call from the paediatrician with the results. It showed that Williams brain pattern is massively abnormal which we were expecting (doesn't make it any nicer to hear though) but there was no recorded seizure activity on the report including the time when he had what was visible to us as a seizure. Very strange!

So we are booked in for an appointment with the neurologist on Wednesday in the vague hope she may have some answers! Either way we are planning to request another MRI as he's not had one since he was teeny tiny (about 7 days old) and it wasn't very clear. Maybe a clearer MRI will show exactly what damage there is and give some answers?! Probably not but worth a try!

We also had a chair assessment last week but it wasn't very successful. The chair wasn't the right size for William and he hated it - screamed the place down! So we wont be getting one of those! But on the positive side, the lady from wheelchair services came to the appointment and was able to see William in his other chair and was so impressed that she has agreed that he does need another one on a buggy base so he can go out and about in it. So Chailey will hopefully be getting the go ahead to start making a new one soon!

William has been doing very well this week though, he had OT today and his therapist, Jane, was very pleased with him. He seems to be coming along really well in his chair and concentrates so hard to try his best to do what is asked of him. I think with a lot more time and a lot more encouragement he could definately learn a lot. He is a very determined little boy that's for sure!

The last few weeks when Williams been in the bath with his Daddy they've been working on pushing toys away from him and he seems to understand the concept and what is required, he then concentrates so hard to do it and sometimes he manages but other times he concentrates so hard he goes off into one of his "seizures" bless him, I am so proud of him for persevering and not just getting cross whenever he can't get his body to do what he wants.

This week is a little less hectic than last week, only OT, Physio, neurologist, school for parents and three sessions at nursery to fit in along with a photograph for the local paper and 2 Christmas parties! Honestly don't know how I could possibly get a job with all that going on!!

The Facebook auction is now up and running so don't forget to check it out www.Facebook.com/pleasehelpustohelpwilliam.

Seizure city

Williams seizures have increased. A lot. He was having about 4 or 5 a day but recently he's had 11 just at nursery and he's only there for 3 hours! So it's more like 20-25 a day which is really scary.

We've seen the paediatrician and his medications have been increased but that's not made any difference at all. So the next step is steroids but that has no guarantee of getting on top of them. So today we are off to Haywards Heath to have a sleep EEG. William will be given melatonin which is a hormone type drug which will send him to sleep and then lots of tiny electrical wires will be stuck onto his head to measure his brainwaves!

Once we've got the results of that the doctors can see whether anything has changed since his last one and they'll know how much steroids he needs!

Luckily he hasn't had a big one recently but the little ones although they don't look scary actually scare the hell out of us as we don't know what damage it is causing to his brain. He's started to become really upset after them now which isn't nice either.

Williams seizures aren't typical like the ones we all see on the TV where the person is convulsing on the floor. They are strange to see and most people don't notice them, apart from friends and family who have seen them before and people who understand epilepsy!

His head turns to one side and drops down and his arms fling out to the side - sometimes his eyes twitch, sometimes his head twitches, sometimes he makes groaning sounds, sometimes he laughs and sometimes he cries. The main thing is that his body, which is usually so stiff, goes completely floppy and his arms are so stiff you can't bend them, his head locks in place and there is nothing you can do to move it. Sometimes he is still with you in that he will make eye contact and follow you if you move but other times he is away with the fairies somewhere we would never know of. It's scary.

There are no specific triggers. He can have them when he's happy, when he's sad, when he's tried, when he's alert etc etc. He even has them in his sleep now which isn't great and makes him scream the place down.

We've seen them so many times now that we try to make light of them when there are people about so as not to scare them too.

Anyway, hopefully today's EEG will give us some answers about where to go next and maybe we may be able to take control of them at some point and give William a break from them.

If anyone has any magic spells to stop them please let us know!!

On a lighter note. The auction and wine tasting went really well. We raised an amazing £2400 at the auction which is just brilliant! Our next Facebook auction starts this weekend (Saturday) so take a look www.Facebook.com/pleasehelpustohelpwilliam.

People are always asking me where I get the enthusiasm for all this fundraising and organising things and it's simple. The more time I spend thinking about things like that, the less time I have to think about the seizures, the tests, the drugs, the Physio and of course the future.

Xx

Finally William has a chair!! Yippee! It's brilliant and I am very pleased to say that he likes it too! He's managing about 20-30 minutes in it at a time at the moment, he has had a few times when it's been longer but we are slowly easing him into it. I've been trying to get him to eat his lunch in it but he is struggling with that as he is so upright and it just spills out of his mouth and then he just gets cross and refuses to open his mouth! Think I would get cross if my lunch was just dribbling down my face though!

So hopefully if he manages to tolerate the chair for the next month or so then the lovely people at Chailey will make him another one which can go onto a buggy/wheelchair base so he can go out in it and take it to nursery with him. That'll make a huge difference to how he can get involved with the other children as he can then hopefully join in with the activities they're doing - painting etc etc!

On the subject of nursery, his mainstream nursery seems to be going really well and William is loving it there which is just brilliant news. They are going to slowly transition him into the next room up- he's still in the baby room at the moment so the worry is that he is getting bored there. My only worry is that the noise in there might upset him but if it's a slow transition then he will soon get used to it and they're so good there I have no doubts that they would soon take him out if he did get distressed.

William has been very clever recently, I've been teaching him to knock over a tower of cups when he is side lying during his brainwave therapy and last week he managed to do it himself. It was a very slow process for him and he was concentrating so hard that he was grinding his teeth and dribbling everywhere but very slowly he managed to move his arm over to the cups and slowly knock em over. We've been practicing every morning and he is managing it about 3 or 4 times in a row now. Don't get over excited by this news, it is brilliant but by no means is it easy for him, it's a massive effort for him and he finds it so hard but once he manages it he seems very pleased with himself!

He has progressed loads when lying in prone (on his front) over his wedge. When we first started the brainwave programme he would extend as soon as he was on his front and would banana right backwards. Now he can weight bear on his hands for a while and will keep his head down looking at a book or a toy for quite some time. When we first started I had to be behind him holding him but now he can balance much better so I can come to the side to play with some toys with him which is amazing. Still working on getting him to turn his head to the right as he is always turned to the left but that is also related to his loss of vision on the right hand side.

He has also been playing peek-a-boo with some silver paper and a sensory scarf, lying on his back and he will try very hard to bring it over his face, he still needs a it of help to start with but nice we've done it a few times he tries even harder and will bring his arms down most times to reveal himself!

Still not getting anywhere with standing frame issues, think everyone has forgotten about it to be honest so William is still not standing which isn't good for his hip development. Will have to kick up a fuss soon I expect.

I've just read a brilliant book about a mum whose little boy had cerebral palsy, I would recommend it to anyone who wants to get an insight into the lives of families like ours it is so true to life. It's called Blue Sky July but make sure you have some tissues ready as it is a very emotional read!

Don't forget to check out the website for all our events coming up - this week it's our charity auction with Ian Towning as our auctioneer (Ian is a dealer on ITVs Dickinsons Real Deal) and we also have live music from Terry Winstanley (X Factor) and Mick Short! Looks set to be an amazing evening!

September update!

Well William is still working hard on his brainwave programme. We have started doing it first thing in the morning before nursery so he isnt tired and it's working really well. He is tolerating most of the exercises really well now. We had a few issues but a phone call with the therapists at Brainwave and some ideas to change the order of the exercises and we got it sorted! Its been a bit of a battle trying to get people to realise that this programme is important, it was created for William by some very experienced professionals and we are already seeing a difference so we will be carrying on with doing the exercises every day (maybe he might have weekends off!) but Williams nursery have been really supportive and have taken the DVD to watch so they can hopefully carry out the programme when he is there which will be great for him as he probably wont even realise he's exercising if its incorporated with playing or reading a book!!

Since hes started doing the programme William can now...

- eat a full meal & pudding without gagging or throwing up

- close his lips when a spoonful of food or a cup of drink is put to his mouth (not every time but a lot more that before)

- kneel for much longer at his wedge without complaining and puts his weight through his hands

- tolerate side lying for longer

- start to bring his hands up when we play 'peek-a-boo'

Not bad for a few weeks hard work hey!

William has been a real joy to be around recently. He is happy most of the time, much more so than ever before. He has been laughing so much at such silly things that it's made me laugh to the point of crying a couple of times! Toast is apparently hilarious! Who knew!? Other funny things include... brushing his teeth while making a noise like an electric toothbrush, talking about raincoats, running whilst carrying him, crunchy gravel and Elmo!

Finally the new chair is almost finished! He had the final fit last week and they are now just making the covers to go on it and a new tray for it and we should (fingers crossed) be collecting it next week! Here is a photo of him trying it out (pre-covers) and he loved it, he actually sat in it for over 1/2 hour with no fuss or extending at all! Should be great when we have it at home!

He also has a new bath support which we haven't tried out yet but it looks like a baby sunlounger! So if it doesn't work in the bath we'll take it down the beach!

School for parents wasn't great this week - William was very tired and cross and cried through most of it. But I have been given some photos of him there so you can see the things he gets up to there - he has been sitting really well on the stool for a while now and if it wasn't for his head falling backwards he could manage it in his own!

Look how tight he's holding his grasp bar!! 

He is now having fortnightly visits from the occupational therapist who was very pleased with him last time she came. She teaches him hand skills which is hard for me to do on my own as he has no seating. We are a bit worried about his left arm though as he twists it backwards and out to the left. Looks like he will need some sort of splint or taping to try and rectify it so he can use his left hand easier.  We are looking into Kinesio taping as one of Williams buddies has it for her feet and thumbs and it seems great!

Fundraising is going well and since my last post we have been in the local paper and on the local radio so hopefully there will be lots of people at our events! Tomorrow is our pamper evening then we've got the auction, wine tasting, Halloween walk, nearly new sale, where's Wally day, grease night, James bond night and Christmas fair! How on earth we're going to fit in planning all that lot I do not know! Hope some of you will make it along to the events or spread the word about it! Or even put up some posters for us!!

Larry also walked his 170 mile trek in Spain this week and has so far raised £1900 for Brainwave which is just superb! If you didn't sponsor him but still want to the link is www.justgiving.com/larryslongwalk.  William is VERY proud of his grandad for doing that for him and the other children  benefit from Brainwave!

And finally, Kev (Williams Dad) has lost over 3 stone now which is amazing and we are all very proud of him. He looks like a different man now and William thinks it's great as he can get deeper in the bath now when he lies in his Daddy's tummy!!

More updates soon!

Well its been a few weeks since we came home from our Brainwave visit and things have been going quite well.

The therapy itself is quite hard work for William and for us but William is adapting well and was tolerating most of the positions very well.  The only one we've really been struggling with is the rolling on his back but other than that he's been ok.

Only problem is he's put on so much weight with his gastrostomy that he's outgrown the meds he takes to calm down his dystonia so the past week or so he's been so dystonic we've struggled to do any of the exercises.  But the medications been adjusted so over the next 2 weeks we'll be gradually building it up to try and get on top of the movements so we can get back to the therapy!  He was doing so well :(

But great news that he's putting on weight, in actual fact he's been putting it on so quickl we've now had to reduce the amount of feed he is being given!  But the best news of all is that he is now tolerating one solid meal a day!  Yesterday he actually managed dinner and pudding!  Its great as it wasnt long ago that he'd have one spoonful an vomit straight away!  Well done William!

He's been back at his old "mainstream" nursery over the summer holidays and has been getting on really well there - so well that I am going to keep him there for one session a week hopefully!  He loves the girls there and they keep him very well entertained!

My Nan, Williams Great-Grandma, was very generous this week and has brought William an iPad as he loves looking at my iPhone so much!  He loves it!  We've set up all his music on there along with his photos and now we can put him to bed awake and he watches it until he goes to sleep.  Hopefully as he learns new skills he will be able to use it to communicate with us as well!

I've saved the best news for last though which is that we went to our multi this week and William had his eyes checked for the first time in a year and she was extremely impressed.  We thought his vision had improved but as we were told he wouldnt be able to tell the difference between us and the neighbour we wondered if it was just us being his parents thinking that it had got better.  But no, it turns out even the professionals think it has!!  Yipeee!!  Way to go William!  All that sensory stimulation obviously worked then!!

We've now got a new website as well where we'll be updating our fundraising events and there is a link on there to get to this blog so its easier than typing the long winded address you need to get here!

The address is http://www.pleasehelpustohelpwilliam.com/

Our trip to The Brainwave centre – warning this is quite long so grab a cup of tea and a biscuit!

Thanks to everyone that supported us with fundraising for William to be able to come to The Brainwave Centre, we have just had our first sessions and wanted to let you know all about it. Special thanks to Ifield Chestnut House & the Masons for their generous contributions.

We travelled up to Bridgwater in the car which we were slightly worried about as William isn’t a good traveller but it was ok, there was a bit of fuss but a few stops at Little Chef and the nursery rhymes on repeat soon sorted that out!

The accommodation was amazing, a beautiful 2 bedroom  bungalow that was so nice you could easily have lived there!  William was also very impressed and settled in very quickly, even managing to sleep through until 6am the first night!

DAY ONE

Our first day was the assessment day and started off with a meeting with one of the team taking a detailed history of Williams birth and everything that has happened since, he was shattered after his long day the previous day so he slept through most of that!

After that it was down to work, we spent 2 hours with 2 very experienced physiotherapists.  They tried William out in all sorts of positions, sitting, standing, lying, rolling etc etc.  A lot of the positions he’d never been in before and we’d never been shown them either and the few things we did know turned out to be completely wrong for him!  He tolerated the whole session incredibly well and surprisingly didn’t cry once. 

The therapists explained Williams extension patterns and why they happen which we didn’t understand previously.  They then showed us some techniques to break his extension and help him to maintain a better position.  They explained to us that William extends a lot because he doesn’t know any differently; he hasn’t developed his stomach muscles to be able to do any other movements properly or to have control of his limbs or head.  The plan is to try and help him to build up these stomach muscles in order for him to have better control and therefore when he does go into extension he can try and control it himself, it’s very unlikely that he will ever stop going into extension completely but if he could regain control quicker and easier that would be a massive step for him and would help him to be able to do a lot of things he can’t do now.  Obviously this will be a long slow process but it all starts tomorrow! 

We were shown some different sitting positions for William to try that will allow him to develop the stomach muscles and be in a good position to play. 

They explained to us that one of the reasons William dribbles is that he hasn’t developed his cheek muscles and that is why his cheeks look so chubby, like babies do before they learn to chew.  So he now has a special chew stick that we put between his teeth and his cheek so he can learn to chew and develop those muscles; that will in turn help him with his eating and communication etc.  We always thought that the reasons the therapists and doctors still told us to give William small tasters of food even though he now has a gastrostomy was so that he could sample different tastes, not so that he could develop these muscles so that was a real eye opener.

They tried him in positions on a wedge and a roll and he tolerated most of the things they tried, those that he didn’t tolerate they simply adjusted to suit him. 

We discussed Williams equipment that we have at home and they were very surprised by the type of standing frame he has, basically it is totally unsuitable for a child with dystonia which explains why William doesn’t tolerate it – good god is there anything that our physio didn’t get wrong?!  So when we get home we’ll be on the case to get a different type to try out!  Basically he needs what is known as a prone stander, which is where he is on his feet but on his front on a board at an angle so he is not fully upright, that way he can play and learn to bring his head down.  The standing frame he currently has starts with him lying on his back and being strapped in and we then tilt it until he is upright, the problem with this is that the more pressure points he has the more he pushes so he is constantly fighting this one!

I showed them how we’ve been taught to help William to learn to roll and they weren’t very happy.  They explained that William isn’t ready to roll yet, when we try he just goes straight into extension, his head goes straight back and he looks like a banana!  So instead they’ve encouraged us to try William rolling on his back from side to side and not right over, that is something he tolerated really well and in time once he’s confident with that and has built up the muscles he needs he will be able to try rolling right over.

The afternoon consisted of a hydrotherapy session which William enjoyed, the physio spent a lot of time trying out different positions in the water, similar to those on land, and helping William to swish and sway to experience different movements and also encourage the stomach muscles to strengthen.

We were shown a lot of things to try when we go swimming, tomorrow William will have hydro again and we will be shown a range of position / exercises and will be taught how to carry them out properly.

Then we went on to going through a special graph they use to plot childrens levels and abilities in correlation to age – as expected William is below the age level he should be but we were really encouraged when they showed us what he can do and in some things he was much more developed than we would have thought.  For example, his vision is at a level similar to a 12-15month old and we would have thought it would be far below that, and his socialisation skills are that of a 1 year old.  All this may sound negative but to us it was very positive as it plots where he is now and we will be able to see how he develops.

We then went on to talk about feeding and showed the therapist how he eats, they were surprised by how well he does eat but had some tips for us which helped a great deal.

Then they spent the last hour or so going through the programme they have put together for us to carry out at home, it is a series of 1 or 2 minute exercises and positions that put together will take 30 mins to an hour & we will do it every day.  Tomorrow they will go through it all with us, showing us how to do it and then teaching us both how to do it properly and it will all be recorded on a DVD for us to take home.

William was shattered after the long day and all that hard work, he was in bed before 8pm!  Roll on day 2!

Morning of DAY 2

This morning started at 4 am when William decided to wake up!  We put his nursery rhymes on and settled him back in his cot which worked well until the songs stopped and he cried again!  After listening to them 3 times it was time to get up at 6am and get ready for day 2!

Unfortunately due to Williams early start day 2 didn’t start off too well as he was so tired by 9.30.  The therapists had planned to go through the whole programme with him but after a couple of exercises he was kicking right off and we couldn’t get him to do anything but go into extension!  So back to the bungalow we all trudged and William was asleep a few minutes after his head hit the pillow! 

After a well needed sleep William was a different child and we went back to start learning the programme.  It starts off with showing him an object and a photo of the object with the aim to teach him some language which in turn will develop his communication skills.  Then it is a series of different positions using a wedge, a roll and a peanut ball as well as sitting on our laps and different ways to lift him and get him dressed etc.

Gosia the therapist showed us each exercise/position with William so we understood how to do it before both trying ourselves.  So William had 3 attempts at each one!  Needless to say this wore him out!  He tolerated the positions very well and those that he didn’t get straight away he soon tolerated once he was shown a toy or listened to his nursery rhymes. (if I hear Humpty Dumpty once more I may scream!) 

We’re so proud of him to be able to tolerate trying out these new things so well and not crying once.  Apparently they have a lot of sessions where the children cry throughout the whole thing so for William not to was a real achievement and shows how much he wants to learn all these things – then again whether he’ll manage it so well next time, we don’t know! 

The strangest part of the whole programme will be getting used to picking him up and hold him in a completely new way to enable him to use his stomach muscles as much as possible and also to try and stretch his spine to work on preventing the scoliosis from getting worse.  I need to show everyone else involved in his care how to handle him so that they are all doing the best thing for his development too – thank goodness for the DVD!

The whole programme is fantastic, it’s just a shame that we have had to fundraise to afford this therapy when really the therapy we receive from the NHS should be at this high standard too.  Seems very strange & somewhat lazy that the physios in Worthing bother to train for so many years to become physiotherapists but then don’t carry out any hands on therapy and instead rely on equipment to do the job for them – and in our case equipment that isn’t even suitable for a child with dystonia like William!  Still, I am so pleased we found this place and we will be coming back regularly in our quest to help Williams development as much as we can.

This afternoon its learning how to dress William and then a hydrotherapy session which I am secretly looking forward to the most!

 DAY 2 AFTERNOON

Well the morning session wore William out so much that he fell asleep at lunch time and we couldn’t wake him up!  We managed to carry him over to the centre and have a conversation and he was still asleep – that’s never happened before!  He ended up sleeping for an hour and he’d already had a sleep in the morning so that was a shock!  At least now we know if we need to wear him out then therapy is the way forward!

The afternoon consisted of hydrotherapy which William enjoyed,  we learnt a lot of great exercises to carry out in the water to help him to stretch & work out his muscles and improve his head control.  We all had a go at holding him and carrying out the positions and he tolerated it well and seemed to enjoy himself.  The pool here is lovely, nicest hydro pool we’ve been in!  We tried out a fantastic star shaped rubber ring which William can go in – because of the shape of it he can put his arms either side of one of the star points and rest his chin on the rubber so he doesn’t go under the water, he relaxed straight away in it and was really happy.  We were given one of these to take home so we can use it when we go swimming with him which we are planning to make a regular thing now we know what to do when we get there!

They also gave us a wedge, a roll and a peanut ball to take home to carry out the programme which is brilliant as those sorts of things aren’t cheap!

All in all the whole thing was incredibly successful, far better than we could have imagined and I think William will really benefit from it.  We’re booked in again at the start of January for a re-assessment and that’s when they will see how he has progressed / changed and adapt the programme accordingly.

We are all shattered from the last 2 days but it was so worth it!  The programme costs the centre £3500 per child per year and we only have to pay for 20% of those costs but they get no government funding and fund the whole of the programme throughout the year from donations and fundraising.  So if you would like to help William and all the other children that attend the brainwave centre, please visit their website for more information.

Tomorrow we’re taking William to see the animals at Longleat – monkeys mainly as hopefully he’ll love them climbing on the car! 

p.s. throughout writing this Kev has asked me a million times whether I mentioned him in it so yes Kevin now I have!!!

Seizures :(

Sorry but think it best to warn you that this may not turn out to be a very positive update today.  William has just spent the day in Worthing hospital after having a big seizure at nursery this morning.  It came as quite a shock today as he has been so well and happy but he had a seizure that lasted 8 1/2 minutes - the longest one yet -  so an ambulance was called for him and we all took a trip in it to the hospital.

By the time the ambulance got to him at the nursery he had come out of the seizure so they didnt do much other that monitor him and check his temperature etc.  Thought it was best we went to hospital just incase though and we spent the day waiting to have his meds adjusted.  Turns out he's put on almost a whole kilo in the past fortnight so he's basically grown out of his sodium valproate dosage!  We thought he'd put on weight but had no idea it was that much!  Just goes to show that the gastrostomy is definately working!

So the meds have been adjusted and some rescue medication has been prescribed for him to have at nursery as no doubt it will happen again :(   The paediatrician is considering a course of steroids to try and get on top of the seizures but as William hasnt had chickenpox yet we can't start them just yet.  If he did get chickenpox whilst he was on the steriods it could be really dangerous.  So he is being vaccinated against it next week which is great for the steriods option and even better because it means he wont have to suffer the pox - yipeeee!!

He had a good time at the hospital though and found it very very funny to model a new hat...



Until todays episode things had been going really well.  The gastrostomy and new milk has made such a difference and we even managed a few lovely days out for the first time since he was a tiny baby.  His vomiting meant that we couldn't go out for more than a few hours as we couldnt risk feeding him in public as he would vomit 9 times out of 10.  Now he's rarely sick and when he is its no where near as traumatic for him or us! 

We had 2 lovely family days out last week, the first one in Brighton at the sealife centre which William enjoyed for the first 20 minutes or so, after that he started getting a bit tired and it was a bit much for him but we enjoyed it!  To be honest I think he was more interested in flirting with the girls than he was in looking at the fish...

We also took him to Marwell Zoo for a lovely day out and spent the whole day there, William slept through a lot of it but we had such a lovely day and even called into Portsmouth on the way home for dinner.  That day William had 2 meals in public and wasn't sick - such a novelty for us and such a refreshing change!  Here he is on a cannon in Portsmouth which he found very amusing!

And because of the gastrostomy and the change in Williams feeding and general happiness I was able to leave him for a whole afternoon/evening with his daddy at the weekend while I went to see Take That with the girls.  Before Kev would have realy struggled to feed him as William really only fed well with me so it would have been quite stressful for both of them but they had a lovely boys night in and I had a fab time too!  Thank you Kev!

Only a few more weeks left until our trip to Brainwave so we'll probably update again when we get back unless theres any news before then!

Changes...

Well theres been quite a few changes since my last update so I thought I'd share them with you all...

First off, William had his gastrostomy operation 2 weeks ago now, the operation went really well and he was in Brighton hospital for 2 nights.  Kev was amazing and stayed the night in the hospital so I could go home and sleep.  The gastrostomy tube goes into his stomach just above and to the left of his tummy button.  Its great as we can now feed him through this via a feeding pump and he can also have his medicines through it.

We did have a few teething problems to start with and were very stressed out about the whole thing.  We were discharged on Friday but then ended up in Worthing hospital all day on Saturday as he had an infection.  Then on Sunday we both got a fright when the tube started to poke out a lot further than we'd expected so we rushed him off back to Brighton hospital but it was fine and was something that they say is normal!  Wish they'd told us that before we'd spent all day there!

We've also managed to get William on a milk that is suitable for people with milk intolerances as I have been convinced since he was just a few months that he is milk intolerant. Well it seems I may be right!  He's been on the new milk for less than a week now but the difference in him is huge.  He can now feed without getting pain and having to squirm about and be winded constantly, he has still been sick a couple of times but I put that down to us putting him on his back too soon after a feed.  He isnt choking anymore as he's being tube fed but we are hoping he will continue to have small tasters of foods.

All in all he is a much happier and more comfortable little boy now.  So all that worrying about the gastrostomy wasnt needed, it was the best decision we could have made for him and now we know what we're doing its much less stressful for all of us. 

Here he is chilling on the sofa having his lunch - something he's never been able to do on his own before!

We've also had a new physio take over and she is brilliant.  We've only had one appoinment with her but already she has actually done some physio rather than just sing and adjust equipment which is whats been happening for the last 2 years.  Sandra went through all the things she was doing with William and showed me how to do it an explained why, something I've never had before.  She was so positive about everything from school for parents to brainwave.   It was such a nice change to the constant negativity we face from everyone else.  Our old physio has moved onto a different role in the hospital but to be honest I think for William it was the best thing that could have happened as I now feel confident that he will be getting the therapy he needs in order to be able to maximise his potential.

We went to the opening of We Cycle Too this weekend and we were completely blown away as it was so brilliant.  It is a new part of the Brooklands park and has a great cycle track and bicycles that are suitable for children with various types of disability in order for them to be able to enjoy cycling.  William went on one of the amazing bikes, he cried the whole time but I think thats coz he was having a bad day - I'm sure he'll love it next time!  He also went on the wheelchair accesible swing in the park and he loved that - not sure his buggy was meant to go on it but he enjoyed it!! 

One thing that has happened since our last update that isnt so positive is the results of Williams EEG.  The results showed that the jerks that he has are infact epileptic seizures.  He has up to 15 or so of these a day so that really wasnt good news.  We are seeing the paediatrician again today to discuss changing his medication doses and perhaps putting him on a course of steroids but we need to know about the side effects etc first.  If we could get those under control it would be a big weight off our minds.  We are still carrying his rescue medication with us everywhere we go but it is still a worry as he hasnt had it yet.

William is off to Chestnut Tree House this weekend as we're going to London for a few nights and already he seems excited about it so I'm sure he'll have a fantastic time.  We've got a few days booked in over the summer holidays too which will take the pressure off as I am dreading the holidays when he isnt at the Camelia Botnar nursery.  Such a shame they dont have the funding to remain open all year round as they used to.

On that note, please if you can do pop along to the summer fayre at Camelia Botnar, it is on 8th July 10am-2pm.  The nursery is fully charity funded and is the only one in our area that is for disabled children and children with special educational needs so if you know anyone or if the company you work for is looking for a charity to support please tell them about this one!

Overwhelmed by the generosity...

Thought it was about time I did another update and wanted to start off with the amazing news from the facebook auction.  We were absolutely astounded by everyones generosity and kindness and the way people got involved to spread the word about the auction and we are so so pleased to tell you all that although we don't have all the money in yet, the grand total at the moment is looking to be in the region of £1900!

That is just incredible, we set out to raise £525 to pay for Williams first session at The Brainwave Centre and this total will not only pay for that but will leave us with £1400 to cover his follow up sessions which are in the region of £280 each so about 5 sessions or 3 years worth of therapy in total!  AMAZING!

So we want to say a huge thank you to every single person who donated to the auction, made a donation to the account, placed a bid, won an item, spread the word about the auction and just helped us along the way.  Without you it would not have happened so we are very very grateful.  We hope we can return the favour sometime by helping someone else who needs it.

The Brainwave centre appointment is at the end of July and we are really looking forward to it, a few people we know have been recently and have come back with really positive feedback so we are really keen.  Unfortunately some of the 'professionals' don't seem to back it which is a shame as they probably don't have any real experience of how it works, but that doesn't stop them from sharing their negative opinions does it - one day I'm sure we'll meet a professional who can recommend something positive rather than turn every therapist or therapy other than themselves into something negative!  Do they not think as parents we spend a lot of time researching things or are they under the impression that we just jump into things without thinking?!  Sorry rant over - just makes me mad!!

William is getting on really well in general and is constantly happy and smiling at the mo which is great.  He seems to be much more alert and is so interested in the world around him at the moment which is brilliant.

Eating wise he is still only being fed the high calorie milk which he is having via a syringe and that is working at the moment but he is still being sick occasionally.  We had an appointment about his gastrostomy last week and he is now booked in to have the operation on June 15th which is only a few weeks away.  The gastrostomy is definitely going to make a massive difference to him and take the stress off with his eating and medications but it is very scary and involves an operation and hospital stay which is not a nice prospect.

We also had a really good seating assessment at Chailey this week.  They tried him in a few different seats and he couldn't tolerate them so they decided to try a moulded seat.  It worked by getting William into a comfy seating position that he could tolerate in a special beanbag, once they'd got him comfy and he seemed happy they sucked all the air out of it so the beans formed a rigid cast.  It was amazing, he sat in the cast for over 1/2 an hour with no straps.  he had a special headrest which went around his neck like those cushions you have on an aeroplane and he didn't push back at all.  He was lovely to watch as he seemed to be really surprise and pleased with himself for sitting on his own without an adult having to help him - very proud of him!

The engineer will now use the beanbag seat to make a cast from which a foam seat can be carved out for William.  That will then be fitted into his chair and if it is successful can also be put onto a buggy or wheelchair base.  It was so nice to have such a positive appointment and come out of there with the feeling that finally we might be getting somewhere!  hopefully it wont take too long before William can try it out!

School for parents is going really well too, Williams tolerance of things is just increasing week by week and he seems to know the task series now, he knows what is going to happen next and what is expected of him. Unfortunately like any other 2 year old he doesn't always want to play along!! 

So all in all a positive update - things are going well at the moment - long may it continue!

An Update

Thought it was time for an update...

William is still not tolerating solid food at all and so far has only managed to go 2 days without throwing up.  We are still feeding him via a syringe and have been flavouring the high energy feed with milkshake powder to make it a bit more interesting (flavoured milk has been ordered!). 

Despite this he is still so so happy!  He's spent what feels like most of the month at The Chestnut Tree who have been amazing!  He is there now as they were brilliant and offered us 2 extra nights so we've had a nice bit of respite.  He absolutely loves it there spending time in the sensory room and going for trips up the lane to see the calves.  His little face lights up when we get there and its lovely when he gets really excited to see us when we go back to collect him!

We went back to School for parents last week for the first time since before easter.  William was amazing, he seemed to know why we were there and settled into work (cleverly disguised as play) straight away.  It was the best session hes had there so far.  He managed to tolerate sitting straight away and made no fuss about sitting on the stool which is a first!

But the best thing was when he was lying on his back, he was so interested in everything and really tried to do what was asked of him.  He managed to hold a peice of silver paper in both hands and we were encouranging him to bring it over his face and play peek-a-boo and he didnt need any help to do it, I wa saying ready stead go and he was pulling it down to see me and then getting a big smile on his face as he knew he'd done well!  Brilliant! 

Then he had to hold a small hoop with both hands and managed to keep hold of it for a good few minutes which was impressive in itself but not as impressive as this... Chris the group leader had a stick and was collecting the hoops on it, he saw his friend Tom put the hoop on the stick and when it came to his turn he immediately let go with one hand and pushed  the hoop towards chris and straight onto the stick.  I was gob-smacked and so was Chris!

Definately the best session so far!

He's now had his sleep system delivered but the delivery man knew nothing about setting it up so its still in its box in our hall.  Well we've only waiting about a year since trying the first system so why not let us wait a bit longer hey!

And still no news on adaptions for his chair despite chasing Chailey up numerous times, hopefuly things will happen soon as although we manage with him sitting on our laps at home he is starting to get a bit tall for his buggy so we're going to need something for out and about soon!

The auction is going really well so far and loads of lovely things have been offered so hopefully once bidding opens on May 14th we may have a lot of interest, we were even in our local paper this week trying to promote it...

Bidding on the general auction is all on our facebook page www.facebook.com/pleasehelpustohelpwilliam if you look at the photo album just find something you want to bid on and leave a comment on the photo with your bid.  Bidding is open 8am 14th may until 6pm 21st May. 

We also have a special auction on where you can bid on a holiday to Turkey, Williams great-uncle Tony has donated a 5 night stay in his penthouse in Instanbul along with flights with Easyjet.  Bidding started at £500 and we have had a bid but you can bid until 14th May 6pm.  Full details on our facebook page.

I am so overwhelmed by how generous everyone has been so a massive thank you to everyone who has donated something for the auction, spread the word about it and promoted our facebook page.  One lovely lady even wrote a blog about us on her company website, you can read it here Gumigem Blog

I'm now off to collect William from The Chestnut Tree,

Thanks for reading!

Upate & Charity Auction

Update...
William has gone rather down hill in the past 2 weeks or so since the seizure.  We had the NG tube put in but it was not successful.  William got sickness and diahrrea and then just kept throwing up randomly even when he was better.  He would all of a sudden start choking on the NG tube and throw everything up.  He  even threw the tube up a couple of times. 

We persevered with it but eventually the community nurses suggested leaving it out for a bit to see what happens.   So we went back to solid food but he still threw up, this time only when he was eating though - he would start gagging and couldnt stop himself and would vomit all his food.

By this point I was pretty much at breaking point as I didnt know how to get William to eat and keep enough calories down, the washing was piling up as he was vomiting so much and everything was covered so I contacted The Chestnut Tree Hospice who are life savers and offered william 3 nights respite. 

They are struggling to get him to eat solids as he is still gagging and throwing up but it is still only when he is eating and not at random times anymore which makes us think it was the NG tube setting off his gag reflex and causing the sickness.  They have resorted to feeding him is high calorie feed (milk) with a syringe and it seems to be working.  Its not ideal as he is clearly going backwards but at least he is getting the calories he needs now.

The Chestnut Tree are amazing and last night they offered to have william for an extra night which means I have another whole day to myself which is just lovely, I can even go to the supermarket and do a proper food shop - something I cant do with William as he cant sit in a trolley!

We have been speaking to Williams paediatrician throughout all this drama and she has been really supportive and helpful - she has contacted the surgeon who will do williams gastrostomy which is now quite urgent and we have an appointment in May for an assessment - hopefully after that appointment it shouldnt be too long before he has the operation and the gastrostomy will hopefully be able to help him to gain weight without being sick all the time.

Despite all that he is going through William remains a cheerful, happy and very cheeky little boy! 


Charity Auction...
We are organising a charity auction to raise money for william to be able to go to The Brainwave Centre in Somerset for a specialist therapy programme to be designed for him.

The therapy centre is aimed at children with brain injuries such as Williams, they will assess him over a 2 day period and then create a special therapy programme for him that we can carry out on a daily basis back home.  They also have hydrotherapy on site which he can take part in whilst he is there.  The whole thing sounds fantastic but it is pricey and the first 2 days will cost £525, he will then return every 6-8 months for reviews and the programme will be adapted as needed.

We have started to do some fund raising to help us to pay for William to attend this much needed therapy and we are organising a facebook auction.  We have had some great items donated and they can be viewed on the facebook page Please help us to help william if you would like to donate an item or can think of anyone else who might we really would love to hear from you.

The auction will take place on facebook so please 'like' the page to take part and grab yourself a bargain whilst helping William!

If you are not on facebook you can still get involved, click on the link below to view all the auction items and then email me with your bid lauramoore1976@aol.com - you wont be able to see the existing bids but I can advise if you have been outbid!

https://www.facebook.com/media/set/fbx/?set=a.114151055333307.21579.113716598710086&l=eb22bcc2a8

 

Thanks for your continued support xx

An Amazing Night...

Last night was Williams race night held by http://www.ifieldchestnuthouse.co.uk/ at Ifield Cricket Club in Crawley.  It was brilliant!  A great group of lovely people who raise money for Chestnut Tree House and other local charities and we were lucky enough for them to put all their efforts and hard work into raising money for William to have a sensory room at home - we feel really privileged!


The night itself was great fun, betting on pre-recorded horse races.  We let William choose our horses, lets just say if he turns out to be a gambling man he's going to be very very poor!  He didn't pick a single winner! I won a grand total of £6 which needless to say I then gambled away but that's the fun of it isn't it!


I just want to say a HUGE thank you to everyone who was involved in planning and organising the night and running it so smoothly, and of course thank you to everyone who sponsored horses & races in advance and donated and bet on the races last night.  The lucky winners of the auction race put the whole £125 back into the pot which is just amazing, thank you so much!!

So now William can have his own little sensory wonderland to enjoy at home which I know he will love, we will post some photos once its all up and running in the next few months and of course anyone who would like to come and see it is more than welcome!

What a fantastic end to a dreadful few weeks!  THANK YOU ALL! 

A weight off my shoulders...

What a week!  After last weeks seizure drama William wasn't too good for a few days, just very lethargic and cuddly.  He also started being sick during pretty much every meal which isnt good as he's already losing weight.  So on Thursday we had to bite the bullet and William had an nasogastric tube put in to feed through.

It sounds much more horrific than it is but basically its a long thin tube passed up his nose and down into his stomach.  We can then feed him a liquid feed through either a pump or syringe into the tube. He was so brave when they put the tube in, hardly fussed at all and only cried coz the stupid nurse put her hand over his eye!! He was amazing and I am really proud of him!

We had our first feed at home last night and it was like a weight had been lifted off me, William was relaxed, just sat on my lap getting his tummy filled and was really content.  BUT then came time for medication, now this can go into the tube but because it was all new to me I thought I'd just give it to him orally as usual...BIG MISTAKE!  He proceeded to gag which lead to projectile vomit all over me, him, the walls, the floor and even the dog!

So we won't make that mistake again!

This morning he had his tube feed in bed while we had our cups of tea and watched Daybreak and it was such a lovely relaxed time for all of us, so different to the nightmare of feeding we've had for the past 2 years! And now he's at nursery ready to have some more at snack time!

He can still eat solid food but needs to have a lot of the high energy liquid feed so we'll probably stick to feeding him cereal with the milk on it and then just tasty things like chocolate etc so we don't have to stress about him eating a full meal

I can honestly say that so far it feels like the best thing we could have done, William is really happy and relaxed, we are too and it feels like a sense of calm has arrived in our household finally!

Our day in the hospital

I can't believe I only wrote an update yesterday and now have to write a new one...

Today William had a seizure at nursery and they had to call an ambulance for him.  I got to the nursery while the paramedics were dealing with him and they were giving him oxygen.  They took us both in the ambulance to A&E just incase as it was his first seizure since he was in SCBU 2 years ago!

Its bad enough that William had a seizure but to make things worse we then had to go through all his medical history with the paramedics, then again with the A&E nurse, then again with the A&E doctor, all of whom took detailed notes about his history and the meds he was on, why don't they just read what the person before has written and ask any questions afterwards for god sake!

They monitored him a bit and then sent us up to the childrens ward where guess what... we had to tell yet another nurse all of his medical history and again list the medications he was on even though they not only had the notes from A&E but also his medical file from the CDC by then.  Then we waited and waited and waited and finally a doctor came to see us... guess what she asked??  Yep she again asked for his full medical history and again we had to list his medications!  Honestly I feel like we've not only just had to deal with the trauma of William having a seizure but have had to relive everything that has happened since I was in theatre having a c-section!  I can't understand why they bother to have notes if they dont even look at them!
 
So anyway, we eventually had a visit from Dr Shute who was surprisingly nice and helpful.  She has changed the doses of two of his medicines and also prescribed a rescue medication incase he has a seizure again.  Then we had another nice long wait for the pharmacy to give the meds out, by which time I was about to lose it at them coz the whole day had been so long winded and stressful!

William is fine now, very tired and already gone to bed which is good, lets hope he sleeps all night long coz he needs it!  He was so good with all the waiting around and all the people prodding him and poking him, I am very proud of him for being so well behaved even though he was shattered.

Anyway, thats my moan over.  William is ok and thats really all that matters!
We were in the hospital from about 11 until 5.30 and poor little william didnt even get offered any food on the ward, we had nothing with us as we'd come straight from nursery and I didnt even have a clean nappy with us.  I can't believe they have kids in there all day long and don't even offer them something to eat, its just ridiculous!

The William Diet!

Well William is losing weight again and is going to have a gastrostomy.  Basically, he will have to have an operation to insert a 'peg' into his stomach which then has a tube attached on the outside of his tummy which I can attach either a syringe or a feeding pump to and then he can have fluids, supplements, medication etc through the tube instead of having to have it orally.  It sounds a bit traumatic at first and as it is an operation, it is traumatic but it does have very positive aspects which swe're trying to focus on.  It means that the pressure will be off as William really struggles to eat and it can be quite stressful for all of us, sometimes he takes hours to eat the smallest bowl of food.  I think we could both do with going on the William diet, shame I can't give him some of our fat!!

Once he's had the gastrostomy he can still eat food but if he doesn't have enough then we can top him up with a supplement via the tube.  It also means that when he is at Chestnut Tree House or anywhere else that they need to feed him they wont as they can tube feed him. 
So we're waiting to be referred to Brighton to see the surgeon and have an initial assessment, not sure how long we'll be waiting!

Other than that William is doing well, he's really happy now which is great.  He's been having a course of occupational therapy and has been making really good progress in using his hands but the course is almost over and we won't have another one until the summer so we're considering finding a private OT to fill in the gap rather than letting his learning go to waste.

We have been a bit concerned about his jerks recently as they have increased and last week he had a couple of days when he was having them every 20 minutes or so all day.  The paediatrician was slightly worried about them leading to seizure activity so she has put him on another medication and he will be having another EEG soon. He hasnt had one since he was about 6 months old.  (An EEG is where they hook his head up to a monitor to watch his brain patterns, they watch him whilst he is being monitored so they can make notes of what he is doing and what happens in his brain at the same time)

We're still waiting for another appointment at Chailey about his seating so he still has no suitable seating and his standing frame is also causing problems now!  The headrest we have finally been given for it isnt suitable for him and gives him no support whatsoever.  I complained to the physio about it today but she said that we just have to made do with it for now - thats ridiculous so I can see us having to buy a suitable one ourselves, its just trying to find out whats suitable and where we can get it from thats going to cause more problems!  I actually think the NHS don't care what they provide you so long as they have provided something.  When he was assessed for the head support we were only shown one so we didnt have anything to compare it to and how can you tell if its suitable by trying it for 5 minutes?! 

I found out this week that the OT's from the NHS have to throw away their play dough once its been used by one child because they want to reduce the risk of infection - how stupid is that!  No wonder the NHS have no money!

I'm sure there's more to update you on but its been such a hectic few weeks I can't remember anything else!  If I do I will update this post!

Don't forget the race night to raise money for Williams sensory room is in Crawley, 16th April if you are free to come please do!

Clever William!

There's been amazing progress with William over the past week or so which I wanted to share although some of you have probably already seen his achievements on Facebook!

As you are aware, William cannot sit unaided but thanks to the school for parents, we have been persevering with him sitting on a potty with us supporting his back.  He has been practising this for a while now and last week he felt comfortable enough to have his first wee and poo on the potty!  This is amazing and we are very proud of him as it really doesnt look very comfortable sitting on there with his muscle tone!

Then we had Portage lend him a switch toy and within a few minutes of practicing he mastered it and understood that pressing the button made the barrel go round!  He's even been sitting in his chair and happily pressing the button and playing!  This is really good as switches can allow him to communicate and even use a motorised wheelchair in time!

He also had the occupational therapist this week and she was very impressed with his progress, she was trying to get him to push certain toys to make sounds etc and although she was helping him she said that he was doing most of the work.  She said that he has made major progress and seems to have more control of his body which is fantastic news!

Also at nursery they have been telling me how much he has enjoyed himself and been totally chilled and into every activity theyve been doing.  He made me a daffodil which involved painting and apparently he didnt want to stop!

Last night, Kev showed William a rubber Duck and was teaching him that Ducks go Quack etc etc.  He then put the Duck to one side and asked him where the duck was and William immediately looked at it!  Clever or what!

Birthday boy!

I can't believe my little baby was 2 yesterday!  Where on earth have those last 2 years gone!  He had a lovely time, 2 parties and loads of presents!  First off was his swimming party at the hydrotherapy pool with his buddies which he seemed to enjoy.  Then the following day it was party time with the family and he got spoilt rotten!  Loads of new books, toys, clothes and money - he is actually much better off than me!  And he loved his home made chocolate birthday cake! 

His birthday is a bit emotional for me as although it is supposed to be a celebration it also reminds me of the awful time we had when he was born and emphasises how many things he can't do that he should be able to do at 2 years old.  So a few tears were shed but all in all we had a lovely time!

We had a look around Palatine school last weekend and were very impressed, it seemed like a lovely school and the facilities were fantastic, swimming pool, sensory rooms, music rooms, soft play rooms and all sorts!  The staff we met seemed really good and they only have small classes which focus on life skills rather than the usual things that you would learn at school - I don't think William will need to learn algebra will he!  William isn't due to start school until September 2013 but I know the time will fly by so probably best to start thinking about it now!

William had a visit from the speech and language therapist yesterday which I found very positive (for once!)  She had a "switch" toy with her which is basically a toy adapted to work on a large switch that William can push down to make it work.  The toy was one of those pigs that walks and oinks so when he pushed the switch down it made a noise and moved, after a few tries he seemed to understand it I think, he found it hard to press the switch so we had to help him but hopefully we can work on that with the occupational therapist as if he can master switches he will be able to do all sorts of things including communicate which would be amazing.  I'm hoping to find out if Portage have any switch toys we could borrow, otherwise we might have to spend some of his birthday money on one!

She also showed him a book of farmyard animals and said that she wanted him to find the piggy, well after a few pages the pig appeared on the page and William immediately made a noise and turned to look at the toy pig he'd been playing with.  I was a bit worried that it was my imagination but the therapist was impressed and insisted that he had recognised it and had looked at it on purpose!  Yay William!

Speech and language therapists also work on eating and drinking skills and after seeing William struggle with his water she tried it with some thickener which basically gets added to any drink and thickens it to a syrup like consistency, he seemed to be much better able to manage it after that and although he still spilled a lot of it, he was swallowing a lot too.  So now we have to wait for her to get us a prescription for it but I think it may be quicker to see the GP!

Good news is that we have finally got the head support for the standing frame, bad news is that we cant use it as it doesn't fit as we seem to have lost a bit so we need to wait for another bit to be sent!  And we're still waiting for another appointment about his seating so we're no further along on that front!  But we came across another chair which is more like a bean bag with a special moulded seat on it and we thought that might be a suitable option for at home so we have arranged an assessment with the company next month.

Great news on the sensory room we're hoping to have for William, my wonderful Aunt & Uncle have been working hard to fund raise before a special race night that is being held in April for William and they are doing really well so fingers crossed we will be able to get William a lot of the things that would make his room a lovely sensory wonderland for him to enjoy for years to come!  If anyone would like to come to the race night let me know and I'll forward you the details.

Time for another update! 

We finally had our appointment at Chailey yesterday about getting some seating sorted out for William as he still cant tolerate his chair.  It was a very long morning with 2 physios, 2 occupational therapists, a doctor, and an engineer there asking millions of questions and really looking into Williams movements and how he tolerates different positions.

They tried him in a chair they had there but as we expected it wasnt suitable and after 3 1/2 hours they decided that there isnt anything on the market that would be suitable for him so they are going to have us back for another session so they can take a mould of williams body in the hope that they can then make a foam seat shaped to him which could fit into his chair and hopefully make him comfortable.

The problem we have with seating is that because of his dystonia he really fights against the chair and once he starts pushing he cannot stop, he is so strong too!  They hope that by providing a comfy foam seat he wont have too many pressure points to start the extension patterns (pushing) and then the dynamic back on his chair, which allows the backrest to move backwards when he pushes on it, should hopefully allow him to get back into a comfy place before he starts to fight it. 

The doctor is also really keen to get his medication sorted so that his dystonia becomes a bit less severe, they said that they wont be able to stop it but hopefully they can dampen it a bit.  Without the medication the seating wont work so its a bit of a long winded route to get him seated really! One of the medications he is currently on may be replaced by another which should hopefully make him relax a bit more, its a difficult one though as the one he'd need to come off is very addictive and last time we tried weaning him off it he had really bad withdrawal symptoms and had to go back on it.  Plus the new one would have to be really carefully monitored so as not to make him go too floppy that he cant do anything!  Its all very complicated and very frustrating for us so it must be even more frustrating for poor William!

I have asked Williams physio if we can borrow a tumbleform chair that william used before he got the new chair as he coped pretty well in that and if I could at least have him in a chair whilst I feed him it would be much better than him sitting on my lap the whole time - my shoulders are starting to get really bad again now!

I can't believe William is 2 this month and he still doesnt have a suitable chair to be able to sit in and do things that other kids do!  And lets not even start on the standing frame!

On a positive note though, we are both now back home and the extension is really getting there.  The lounge is now finished apart from decorating and the open plan layout downstairs really will be fantastic for William once he is in a chair as theres so much space!  His bedroom has not been finished yet, its built but we've left it as a shell as we hope to get a grant to complete it.  But William is classed as too young for the grant at the moment which is stupid really as by the time he is classed as old enough it'll then take about 12 months to get the money plus at least another 6 months to complete it, in 18 months from now I think I'll be really struggling to get him upstairs as he's not only getting heavy but he really is hard to carry, he doesnt help you like other kids do, he doesnt hold on and his extension patterns mean that he just pushes against you the whole time!  God knows why they have an age limit on the grant, it really should be dealt with on a case by case basis so the money can be used for the children that need it when they need it!

But the house is really going to be great, I am struggling with ideas for decorating it though and really need an interior decorator!

We've booked William a swimming party for his birthday for him and his friends, he's going to love it as he loves the water but I think my friends are slightly mortified at the thought of having to wear a swimming costume!  Sorry girls!! 

We're also having a family tea party for him so I'm going to try and make a birthday cake this year rather than buy one!  watch this space!