Thursday, 2 January 2014

Happy New Year!!

It appears that I managed to go through the whole of December without posting an update! Apologies for that. The reason was simply that, like for most families with small children, December was manic, with little free time to get ready for Christmas, never mind anything else. We had Lucy's nativity (seriously cute, as they always are), plus last sessions of riding, swimming, Rainbows, ballet etc, each often requiring some sort of special fancy dress / party food / whatever, meaning I was constantly searching for the relevant letter to check requirements before sending the children out of the house to any given activity!

In the middle of all that, Daniel had his final session of NHS hydrotherapy. We have had a year of weekly (in term time) hydro provided on the NHS, which has been great. However, places are extremely limited, so we have had to make way for other children coming along. By fortuitous timing, Daniel will start swimming with school this term, so that should fill the gap in his exercise schedule created by the loss of hydro. Even hydrotherapy had a 'last session before Christmas' special session, with all the underwater lights on in the hydro pool, images being projected on the wall, and best of all, the Christmas album playing through the speakers! It was a lovely relaxed session, and all the children had a wonderful time. At the end, Daniel was the last in the water, wanting "just one more dive" under, to look at the lights! Here he is with Janet, his NHS physio, after I had got out to go and grab the camera....

Daniel was quite tearful when getting dressed at the end (although he quickly cheered up at the sight of the sweeties Janet had brought!) However, a little bit of me is pleased to regain the Tuesday evening slot in our week, and it will mean Lucy no longer has to go to after school club then too.

At the school Christmas Fair, the children also found time to meet Santa, and let him know what was on their Christmas lists.

So, we made it to the end of term, with the usual exhaustion, but amazingly without total collapse from either child.

With the exception of hydrotherapy and swimming, Daniel had a rest from physio in the last week of term, so he could enjoy the end of term, and so that we were ready to restart with a vengeance on the first day of the holiday. We have had lots of visitors and busy time spent with family, but have managed to do physio every day apart from Christmas Eve, Christmas Day and New Year's Day - a good effort, we think! In fact, it has taken ALL our willpower, because none of us have felt like physio, at all, especially Daniel.

He has also had two home visits during the holiday from his private physio, Jenny. One of the main things she is working on with him is awareness of where his body and head are in space. He is doing work in front of a mirror (so he can see when his head is not straight, even if he feels it is).

And, doing things with his eyes shut..... again, this is so he can feel things in space.

He is practising asymmetric actions. In this video clip you see him trying to hand something to Jenny with one hand, while taking something from her with the other. It's really hard for him to do different actions with the two sides of his body.

A nifty bit of equipment called a 'Muz-mo' is used to practise dorsi-flexion and plantar-flexion (moving the foot up and down), which is vital for walking. You can see how it works from the clip.

Meanwhile, Jenny continues to work on building Daniel's strength.

Strength building remains a priority for our sessions at home as well, as well as practising standing balancing, which Daniel still finds incredibly difficult in his short splints, with his longest stand record being 4-5 seconds, and most of the time less. It must be remembered though that pre-op he had no standing balance at all, not even for a second, so we practise, practise, practise......

So, we came to the end of 2013, and moved into 2014, each with our own aspirations and targets (I hesitate to use the word 'resolutions') for the year ahead. Daniel himself has some clear ideas of what he would like to achieve over the next year or two.

Today he started as he meant to go on, by walking to the local shop for the first time! He set off mid-afternoon, with his Daddy, as usual having to overcome the challenge of the gravel on our drive before he could even start the walk itself. It is a distance of 0.6 miles, and took him around an hour and twenty minutes.

Nearly there.......

....and finally arriving just as it went dark!

It was a brilliant achievement, the longest Daniel has walked in one go, and along uneven pavements etc. At some point this year Daniel is planning to walk to school, which he should be able to manage since it is only a little further. However, it will involve a very early start, so we will wait for the mornings to be a little lighter and warmer.

Daniel was exhausted afterwards, but seriously pleased with himself. Here's what he had to say....
(This also gives you a good indication of what happens to his sitting when he is really tired - he reverts to sitting mainly on his right buttock and tipping his head to the left to balance.)