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/