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.
Thursday 24 February 2011
Wednesday 9 February 2011
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!
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!
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