Sunday, 17 March 2013

Party time......

Apologies for the long gap between updates. We thought Daniel's return to full-time school would be challenging, and indeed it has been. We have had to evolve another new routine, which has involved him doing around an hour of stretching and exercises every morning before school starts (rather a squeeze to fit in), then most days he has either an hour with a physiotherapist at school, or hydrotherapy after school. School also have to fit in as much walking as possible, and manage the almost impossible balance between fitting in the physio, and then catching up the schoolwork he misses. He has become extremely tired in the run up to the end of term and we plan to ease off this week for the last week of term, before picking up again over the Easter break when he is fresher. He is getting stronger all the time, but his trunk weakness remains an issue, particularly because he is tighter on his right hand side. This is just one example of where the effect of cerebral palsy on the body is so complicated, and children are often asymmetric in their strength, and the muscles in which they are stiff. For Daniel, it means he tends to sit on his right buttock and lean to the right when sitting, tipping his head to the left to balance himself. Needless to say that is really not good at all for his back in the long term, so we are working as hard as we can on trunk and hip stability, and spending a lot of time nagging him about transferring his weight over to his other buttock.

He continues to do well though, particularly with his walking. He is now 4 months post op and the overall changes are considerable. We are also incredibly proud of the way he has maintained his enthusiasm for school and his work, despite the fact that we are having to squeeze it in here and there where we can.

Last night we had a lovely time at the 3rd annual UK SDR party, held in Daventry. This was attended by 93 children from UK and Ireland, who have either had SDR, or (in a few cases) are due to have it soon. The vast majority of them were operated on by Dr Park in St Louis. It was a wonderful celebration of all that these children are achieving on a daily basis, and a chance for families who understand each other to share their experiences (and physio tips). The party was also attended by Dr Park, his charming wife (who also seems to take a personal interest in all the children's progress) and others from St Louis, including Mad Mike the physio.We had chance to catch up with several families with whom we had overlapped in St Louis, and to reminisce a little!

Daniel has been full of cold this week, so wasn't quite himself, but he still thoroughly enjoyed it. It is also of huge benefit to him to see so many children who not only share his disability, but have also had the same operation. All the children loved seeing the team from St Louis, especially Dr Park, who made an effort to talk to each and every child individually. Here are some memories of the evening.....

Remembering those happy times in the siblings' playroom

Green ribbon 'CP Awareness' buns, plus 'The Arch' cake!

 Around 9pm, Daniel was definitely flagging....

.....although Lucy was still going strong and had to be dragged off the dance floor...

However, once we got them back to the room (nearly 10pm by this time) it was clear that even Lucy was wiped out!

Tomorrow Daniel will be seven years old. It feels like a milestone birthday, simply because of all he has achieved in the last year. We are incredibly proud of him, and of Lucy.  Happy Birthday, son.

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