Hip hip not hooray!

Well it's been a hectic week or so and there's a few bits of news to report about William. 

First off we went up to The Evalina Childrens hospital in london last week about Williams hips. They were really good up there, he had another x-ray and we were seen by 2 surgeons and a physiotherapist.  The result of the appointment is that as suspected, William does have to have major surgery on his hips. His right hip is already a problem in that it is coming out of the socket as it's not developed properly as William doesn't weight bear but we hadn't expected the surgeon to want to operate on his left as well. Apparently it is better if they do both at the same time. So sometime next year he will have the op, we don't know when but as he is not in any discomfort with it they are in no hurry and in the meantime we can continue as normal. It is quite major surgery and I'm not entirely clued up on the ins and outs but from what I gathered from the doctor, they will be cutting away some bone, moving some muscles and then putting it all back together. So William will be in hospital for at least 5 nights with the first one after the op being in intensive care as there is a risk of chest infection afterwards. All very scary and not very nice to look forward to at all. :(

Other news and somewhat better is that we have asked to be referred to the trike clinic at Chailey heritage. They will try William in some special trikes and then make any adaptions that need to be done so that he can go out on his trike!! Sounds fab! We will have to buy the trike but Chailey will do any adaptions that need to be done so that is good. So once weve been to the clinic and chosen something for him we will probably have to start fundraising to pay for it!! 

William has been very interested in the Olympics this week!! He's been loving waving his union flag in support of team GB, there's a video on his Facebook page if you want to see him being amazing and not only managing to hold the flag but also wave it when I asked him to!  Very clever boy!!

Lots of phone calls to wheelchair services over the last few weeks and guess what... Still no wheelchair!! I wont bore you with the ins and outs but needless to say, their service is still shocking!!

That's all for now, keep you updated!!

Finally a catch up!

Firstly, sorry for it being so long since my last post, time just flies when things are going well!  And trust me, they are going well!  As it’s been so long since the last update I am not entirely sure where to begin but I will try my best to fill you in on everything!

So back in March I posted that William had been poorly with a chest infection, well in April he got another one which resulted in him being admitted to the children’s ward for 2 nights.  He was very poorly and the anti-biotics once again made him worse to the point that he couldn’t keep any of his feeds down and was sick quite a lot.  So as he was starting to lose weight we decided to try him on solid food rather than keep pumping him full of the milk that was just coming straight back out - my logic was that solid (pureed) food was heavier so would stay down for longer! Anyway, it worked and we ended up going home the following day.

I wasn’t brave enough to try him back on the milk feeds as he seemed to be doing so well with the pureed foods without being sick. After a couple of days of pureed foods and no milk feeds we noticed that William hadn’t had any seizures and then realised that he'd not had once since the day we took him off the milk.  This continued for a few more days and a few more days after that, it is now July 2nd and Williams not had a seizure since April 30th - the last time he had the milk feed!

Now I am sure it was the milk that was causing the problems, after all I have been convinced he's been in pain from milk for the last 3 years and have mentioned it to the doctors since he was a baby.  When you are in pain your seizure threshold is much lower and if you are susceptible to seizures anyway then it’s obviously only going to make you more likely to have one!  He may be allergic and that may have been the reaction it caused but the doctors think it unlikely and the only way to know for sure is to put him back on the milk which is NOT going to happen!  So now William just has pureed meals, a dairy free diet and we use his gastrostomy for water and medication.

But not only have his seizures stopped, he is a completely different little boy.  He is eating so well, hardly ever gagging compared to before when he would struggle with every mouthful he can now eat a full meal and pudding in one sitting no problem.  

His tone is completely different, he’s much more floppy than he used to be which is good and bad as it means he has less tone in his muscles to help his to try to sit etc. but isn’t extending so much and getting so stiff.  He is far happier in his chair, sleeps for longer and is much easier to cuddle and play with now!  All because of some stupid milk!?!

Because he is now much happier in his own body and more comfy, we have finally been able to order him a wheelchair - a standard buggy type one (called a Snappi) which we hope to have in the next few weeks but knowing what our local wheelchair service is like it is probably more like months!

Something else very exciting happened to William in May, he met the one and only Simon Cowell at Chestnut Tree House!  Yes this photo is real, he may look like a wax work but it really was Simon and he was very nice.  William loved him and wanted to go home in his helicopter!

  

 William also now has glasses!  He looks very intelligent in them and actually likes to wear them so they must be making a difference to him.  We’ve noticed that since he has got them he is much more observant even when he’s not wearing them, follows us around the room and looks around being very nosey! 

We went on holiday to Lanzarote last month and William loved it.  We flew with Monarch who were great, they provided a special chair on the plane for William which he managed to sit in for the whole flight and the assistance at the airports was great as well.  The holiday was brilliant, William was so well behaved it was great.  He loved sunbathing and had a great time in the evenings eating in the restaurants and trying our desserts - on one occasion he ate most of it, cheeky monkey!

He also has a splint on his hand to try and help him to turn it the right way as he was always turning it back on himself, this is a very new thing so as yet we don’t know how well it will work but it seemed to make a difference within the first 5 minutes!

We have been for a lycra fitting and are just waiting on a few last minute adjustments so that William will have a new lycra suit.  Last time he had one he was very stiff and it just increased his tone but now he is more floppy we hope it will increase his tone for the better!  He had a fitting last week and as soon as it was on he was lying much straighter and happier so fingers crossed.  It’s just a pain when we have to change his nappy etc. as it’s so tight!

Talking of nappies - William has started to use the toilet!!  Amazing!!  So we are fitting him his own loo in his new bathroom and waiting on a special toilet seat from the equipment service!

Williams also now had his gastrostomy tube changed from a peg - where the tube is hanging from the site permanently - to a mini button - where there is a small plug which looks like something off a lilo which you plug a tube into when you need it.  It is much more comfy for William as it’s smaller and there’s not a tube in the way all the time!  It was such a quick procedure as well; we were in the hospital by 7.30am but home before lunch the same day!

Williams at nursery now which is going really well.  He seems to love being with the other children so much.  He now goes there 3 times a week but we hope to increase that after the summer holidays!  And then next year he will be starting school - how time flies - so we are now starting on his statementing process which all seems very complicated and long winded!

This is William painting at nursery which he seems love!

Williams new bedroom and bathroom are coming along very well, we are at the stage where it will be plastered next week and then hopefuls should be finished and he will be moved in there by Christmas as he is getting so heavy to carry up and down the stairs all the time now.

We are still waiting on a standing frame assessment which is finally booked for this month so hopefully at some stage in the next few months william will finally be standing!  We've also got an appointment about his hips this month, only been waiting since October!!  Williams right leg is quite noticably shorter than his left now so there is definately a problem with his hip, I'd hope it would be correctable without surgery but I somehow doubt it :(

Best thing of all in the last few months is that William is happy and he laughs every day at the smallest things, noises mainly! 

We are just back from a weekend in Norfolk where we were at a family wedding, William had a lovely time and was very good, the only bit he didnt like was the DJ but wedding DJs are always a bit dodgy arent they!  He wore a lovely suit to match his Daddy, didnt they look smart!!

Unfortunately, William is poorly again today, hopefully it won't become serious like usual but theres a lot of coughing going on so we are off to get it checked out by a doctor! Must be all the partying!!

So I think thats us up to date now but if I think of anything else I will update this again and hopefully it wont be so long until the next blog update next time!  Thanks for reading! x

Christmas - Feb!

Wow its been ages since I last updated the blog so apologies!  I hope I can remember everything that has happened since my last post!

Lets start off with Christmas!  William loved it! He saw so many Father Christmas's before the big day and we told him numerous stories about how he would come and bring his presents on Christmas eve and i do think he actually understood what it was all about.  The week of Christmas he was at Chestnut tree house (our local children's hospice) and had a visit from the actual Father Christmas who arrived on his sleigh with his (real life) reindeer's and Mrs Christmas too which he loved!

Christmas day itself was great, William was very excited about his presents and was really interested in looking at everything which was lovely and then he managed to eat a huge bowl of Christmas dinner - and again the following 2 days!!

Father Christmas (aka us) got William a sensory tent which he loves and seems to spend all day in at the mo!  We took it to Norfolk when we went up there and he slept in it!  I must point out this is an indoor tent - we didn't put him in the garden!!

After Christmas William got poorly again though and ended up in hospital again twice which wasn't good, it seemed to last forever and he lived on dioralite for about 5 days as he couldn't keep anything else down.  We were supposed to go back to Brainwave for our second assessment but William was too poorly so we have had to postpone it until March now.

January

Back to normality and back to nursery etc and what a difference it made.  William is definitely a little boy who likes routine!  He has now been moved up a group at school for parents and is doing much better now.  He had definitely out grown the other group and was getting bored, this new group is far more suited to him and to the level of understanding he now has - much less singing and far more learning - Fab!  He seems to realise that now he is in the "big boys group" he has to try much harder to keep up with them and he puts in so much effort and determination and does really well.  Here are a few pictures to give you an idea of what he does...

We have also started a new programme with our speech and language therapist which involved teaching William to eye point so that eventually he may be able to do that to communicate. Its strange because you just presume he would know how to do it but it really goes back to basics and when we are playing we have to play with whatever he is looking at and say what he is looking at and if he looks at something else we have to say what he is looking at and then move onto that item.  Its to make him realise that when he looks at something we notice it and act accordingly!  Its very hard though as his gorgeous long eye lashes get in the way and we cant always see what he is looking at!!

We have also been back to chailey for Williams seating to be reviewed, he is getting on so well in his special chair that wheelchair services have finally agreed to fund one to be made as a wheelchair yay!  We are going back for a mid-fit in about 6 weeks so hopefully William will have a wheelchair in about 3 months time which he can use at nursery and chestnut tree.  He seems to have developed since having the chair, he sits far better when we prop him on the sofa now and will happily sit in the chair itself for a couple of hours - never thought that would be possible!

We also have an appointment at The Evalina next week to discuss Williams hip, his right one is quite noticeable now and his leg is shorter than the left one.  I don't think its causing him any pain yet but that may change at any time so its best to get things sorted asap before anything gets worse.  So a day in London next week, hope we can find something nice to do whilst we are up there rather than just the hospital visit!

And then in another few weeks we are back up there, this time to St Georges for William to have another MRI - his last one was when he was about 10 days old so he is having another one to see if anything has changed etc due to his seizures and to see if they missed anything on the last one as it was quite blurred.

All in all, William is being a joy at the moment.  He loves being in his tent.  He is enjoying nursery and school for parents, he smiles all the time and is constantly talking to himself - or should that be shouting at himself - and tries so hard to have a conversation with us, just a shame we don't have a clue what he is trying to say!    He is eating really well - possibly better than ever before - and managing a whole bowl of lunch every day and sometimes pudding too!  In fact a few weeks ago he was on my lap in a cafe when I was having a cookie and a cuppa and he managed to throw himself forward to pinch a bite of my cookie!  Very impressive seeing as he is never interested in food and has never managed to take a bit of anything much before let alone manoeuvre himself forward to get it!  Well done William - but stop pinching my cookies!

The only times he isn't happy at the moment are the days he doesn't have nursery or some sort of a group etc, his routine just gets messed up on those days and he hates it!  Bring on school when he is there every day, he will love it!

Talking of schools, we went to see Ingfield School before Christmas and are going back in March for William to have an assessment.  It is a school which specialises in cerebral palsy and works on the conductive education programme we follow at school for parents.  It seems like a great school but as yet I am not 100% convinced its right for William and it is a very long way away.  So we need to have a look at some others and then the fight will begin as to which one we want him to go to!  Not looking forward to that bit!

I can't believe our little boy is going to be 3 this month - where has that time gone?!  This time last year he was only 1!  I will update again with some photos from his birthday and keep you all posted on what happens at the hospital appointments!

We are planning some more fundraising at the mo, another facebook auction which starts on 4th March - BIG THANK YOU TO EVERYONE WHO HAS DONATED TO IT.  Plus a bake sale on 21st April at our Kids Kaboodle sale!  Thank you to everyone who has supported us so far and continues to do so!

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!