Just thought a quick pre-Christmas update was in order! Last weeks hospital visit was fine, the consultant had been advised by Williams previous paediatrician that William needed a Gastrostomy (cant spell that sorry!) which is basically a small operation to insert a tube into his stomach so he can be fed straight through it and also given meds. We didn't think he needed it though as he has been eating really well recently and gaining weight and the consultant agreed which was very good news for William before Christmas!
He got a new seat a few weeks back called a corner seat, unfortunately he cant tolerate sitting in it so Ive just arranged to have it sent back, cant have yet another piece of unused equipment taking up space at home! He cant use his standing frame at the moment either as we're still waiting for a head support for it. Its ridiculous, he's had the standing frame since March or April and has only been in it a handful of times as the physio took so long to get get it set up when we first got it, then the head support wasn't suitable and now we have to wait for god knows how long for the NHS to get us the right one! Seems odd that they're always pushing on us how important it is for him to have these pieces of equipment and then we do have them we cant use them! On the plus side, having waited about 8 months, I have finally been given a date for William to go to the posture clinic at Chailey for an assessment for a wheelchair to be made for him, that'll probably take about a year to be made though by which time he will have outgrown it and his needs will probably have totally changed! If anyone is thinking about starting up a new business, trust me disabled equipment is the way to go, they charge a fortune for it!
The last few weeks have been taken up by Williams numerous Christmas parties, he's now seen Father Christmas 5 times so it wont be such a treat when he comes on Christmas eve now! He was really interested in all of the different Father Christmases though, probably wondering why they all look so different!
Last week we had the last session at the School for Parents which included another Christmas party for William. The session itself was really hard work for him and he did get quite upset but managed to do all the things that were asked of him. At the school for parents they don't use specialist equipment to help with seating etc and so William sits on a low wooden stool that would be fine for able bodied children, I support his back and he grabs onto a bar on the table to support himself and so far he is tolerating it for longer and longer each session. The first time he only lasted a few minutes but this week he sat there for long enough to do some painting which he loved!
He also made a Christmas hat (with some help from me!) I showed him a plate of decorations and by eye pointing he let me know which one he wanted and then helped me to stick it onto the hat and was very pleased with the end result! The highlight of his session though was his first game of pass the parcel! By the time we'd done a few rounds he was definitely anticipating the parcel coming to him and helping me to pass it to his left!
He also had another stay at The Chestnut Tree this week, we dropped him off on Sunday afternoon and he seemed really excited to be there! They very kindly offered us an extra night as well so he ended up being there for 2 nights! He was playing happily in the sensory room when we dropped him off and had been promised swimming and some messy play whilst he was there! Last time he was there he made some decorations for the Christmas tree! I'm off to collect him this afternoon and have really missed him so I cant wait to get him back! Hopefully he will have had a lovely time!
The Chestnut Tree is going to be featured on Daybreak on Christmas Eve so make sure you have a look so you can see where William goes and what a great job they do there. They really are amazing there, in fact the girl who looked after William this time told me she feels honoured to be able work with such amazing children which I thought was lovely!
I've just finished wrapping all Williams Christmas presents, he's really hard to buy for because you have to choose toys that you can play with together bearing in mind his vision as well as his physical abilities to touch etc we got him a drum from the early learning centre that plays music when you touch it, it has to be quite sensitive so he can do it himself so I hope it will be ok! His favourite toy at the moment is a similar toy that Portage have lent us and some bells he can shake with some help from me! I have also decorated the Christmas tree with some bells this year so that whenever Roxy brushes past it she makes them jingle for William! If anyone else has any ideas for sensory toys etc that might work for William I'd be really interested to hear them.
We've found a charity that offers free tickets to various attractions for disabled children so we've requested some for the Sealife centre in Brighton as William likes looking at fish and its quite dark there which is quite a nice sensory experience for him, we're going to take him there in the new year. The website is www.merlinsmagicwand.org if anyone else wants to try them.
This year has been another roller-coaster but I think William has really shown a lot of progress since last Christmas and he is all together a much happier boy which makes it all worth while! I can't believe that he is going to be 2 next year though!
Anyway, hope you all have a fantastic Christmas and happy new year too!
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