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!
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| 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!
