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!