Christmas 2012!

This is just a quick update while we are in that funny lull between Christmas and New Year. We have had a lovely, quiet Christmas at home. Luckily Father Christmas (or 'Santa', said with no 't', as my children say, having obviously spent too long in America) did manage to visit, and the children were very happy. In fact, our night's sleep on Christmas Eve rivalled some of our worst in St Louis, as Daniel woke up at least 5 times in the night, because he was so excited! He was also full of cold, which didn't help.

The children have had lots of time to play with their Christmas presents, and generally adjust to being at home again. That said, in many ways it feels as if we have never been away!

Sneaky bit of physio while playing with his Star Wars present from Santa

Nice crossed legged sitting - he is able to manage about 10 minutes sitting on the floor again now.

We did give Daniel a day off physio on Christmas Day, but we have otherwise been doing the home exercises every day, and have also had one visit from our private physio, Jenny, this week.  Daniel is definitely getting a little bit stronger, and has now tried doing the kicking exercise with ankle weights on....

He has also been trying tummy crunches (small ones!), amongst other things.

The last couple of nights he has managed to wear his knee-immobiliser all night for the first time (we had previously been needing to take it off about 1am). The immobiliser alternates between legs, and holds the leg straight throughout the night. It isn't very comfortable for him, but he is tolerating it well now, and we can see the positive effect when we come to stretch his hamstrings in the morning.

Yesterday, Daniel was on the front of our local paper again. They had phoned us on Christmas Eve to see if we were back, and were obviously looking for a bit of a 'good news' story for their first issue after Christmas......

Today Daniel had his very first walk OUTSIDE! We wanted to do this before now, but the weather has been so terrible since we got home that we haven't managed it. However, today we seized a gap in the rain and he walked all the way round the outside of our house. It wasn't necessarily his best walking, but a milestone achievement nevertheless, and it also included the slope back up to the front door.

We have lots of friends and relatives coming to visit us over the next week or so, and we still need find time to fit in all that physio, so the next time I update it will probably be 2013. It's a funny thought that at the start of 2012 I had barely even heard of SDR, and I had certainly never heard of St Louis Children's Hospital! I look back on 2012 as a dramatic, but ultimately satisfying year, and I wonder what 2013 will bring. Happy New Year!