Sunday, 7 April 2013

Easter holidays.....

Today is the last day of the children's Easter holidays, which have been mainly dominated by Daniel's physio, although we have managed lots of relaxing quality family time too.

This is sneaky physio disguised as quality family time!

After having a 'physio break' during the last week of term, Daniel has had 3 private physio sessions and one NHS session while off school. Lots of hard work....

Electrical muscle stimulation
We have also worked hard at the home exercises. It's fair to say that although Daniel has enjoyed his sessions with the physiotherapists, he has not been so keen on doing the physio at home with Mum! Some days have been not so good but in general he has worked well, and we all saw the results, because this clip shows his new skill! He is only wearing his short splints so he can't really balance once he is up, but it's another new milestone.

The major thing that I realised yesterday is that Daniel has only actually been in his wheelchair TWICE in the whole Easter holiday, and both of those occasions were when he needed to sit down and be stable and comfortable for a time (eg when watching Lucy have her hair cut). He has just walked in his walker everywhere. We are still often pushing the wheelchair (empty or with Lucy hitching a lift) in case he needs it, but have also started leaving it in the car sometimes - a funny feeling.

He has walked around Sainsbury's.......

....around Cribb's Causeway (shopping mall)

....and even around Cotswold Wildlife Park (in the freezing cold).

We don't always notice the progress on a day to day basis, perhaps because we are too close, or because we are too busy doing the physio. Or maybe because we are still caught up coping with the ways in which Daniel does not yet have any independence, like dressing or toileting. However, every now and again we are able to step back and landmarks like leaving the wheelchair in the car when we go to places help us to realise just how far he has come.

It is not only the distances he is walking that have developed considerably. He is now able to walk and talk at the same time (he slows down a little but he used to have to stop completely in order to say something and can now multi-task a bit). In this clip he is complaining that the monkeys are making so much noise that I can't take a decent video of him walking!!

Here is another example. In this clip he is on a more 'off-road' surface. It is uneven and on a downward slope. He is finding it hard, but managing without our intervention.

So, while it is undoubtedly very hard slog, the progress rate is remarkable. We were also incredibly proud to hear at Daniel's parents' evening at the end of last term, that although his school attendence is barely above 50% since September, which has inevitably had an effect on his attainment, he is still doing well. More importantly, he is still approaching his work with great enthusiasm and commitment.

Tomorrow we start the new term, and pick up our juggling balls again!

Finally, some of you may be interested in this. It is part of a documentary series following some children and staff of St Louis Children's Hospital. It has been airing on American TV on Saturday nights. I myself have been enjoying the whole series, but thought I would share this particular episode because it features a child who has travelled from Ireland to have SDR with Dr Park. It shows so many of the places we remember so well, even the waiting room where we sat to receive the progress calls during the op itself. Of course Dr Park features, and even Mad Mike the physio puts in an appearance at the end. Warning for anyone squeamish though - it also shows a little of the operation itself.  I will admit that I allowed myself a couple of tears.