Friday, 21 November 2014

Two years post op.....

Last weekend we celebrated Daniel's two year 'operversary'. In some ways that time seems to have flown by, and in others it seems to have been a long slog of physio and general hard work! I wish I had kept record of exactly how many hours of physio Daniel has done in the last two years - as a rough estimate it would be well over the 500 hours mark now!

As this two year point, we are reasonably settled in the routine that Daniel has two one hour sessions each week with his private physio, and two one hour sessions at home with Rich or with me. He swims every other week, and also rides most Sundays in term time.  He continues to walk as much as possible, as mentioned previously using his walker all the time at school. The difficulty is finding enough time for him to practise walking with his crutches. He does this during physio sessions at school but is not good enough in them yet to use them in school apart from this. We also try at home, but struggle to find the time. This is one of our targets for the next year. Daniel has also set himself a couple of other targets, which I will share with you as time goes on.

Each anniversary is a good time to look back and to celebrate, and although we beat ourselves up and always feel we are not doing enough, sometimes it is good to stand back and look at how far Daniel has come.

These two photos were taken to celebrate the 'operversary'. One of Daniel standing independently, and one with his crutches. He couldn't do either of those things a year ago, on his one year 'operversary'!

Interestingly, if you look carefully at the top photo, you can see the way Daniel stands, putting more weight through his right leg than the left. He still struggles to bear weight through his left leg to the same degree and still has a tendency to stick out his left hip when standing or walking (you can also see that in the bottom photo). His physio thinks this may be a sensory issue. Obviously this is not good in terms of alignment of his body etc, so we just try to correct where we can, remind him, and try to help him feel when his body is not straight, which is really not as simple as you might think!

On the upside though, despite Daniel's imbalance, his latest hip x-ray again showed an improvement. 18 months ago, six months after surgery, his left hip was 29% subluxed (40 % being the point at which they will operate). A year ago that number had come down to 19%, and the latest x-ray showed it as 14%!! That is a result of Daniel doing so much more walking and weight-bearing through his hips. It is not to say that we are out of the woods yet, we will continue to stress about his hips for years to come, but at least we can breathe a sigh of relief for now.

To celebrate Daniel's operversary, we went bowling and out for a meal. It was lovely to see Daniel being able to stand and hold on, then pushing his own bowling ball down the ramp.

In recent weeks Daniel has also had the chance to try powerchair football! The Cheltenham Saracens Powerchair Football Club has been launched, and is running sessions every couple of weeks. Unfortunately, they are on Sunday mornings, which is a clash with Riding for the Disabled for Daniel. This is a huge pity since Daniel has precious few 'leisure' activities, and he would dearly love to do both. At the moment, he has just been to powerchair football on the Sundays when riding is not happening for some reason.

As I am sure you will appreciate, every little boy loves the chance to play football, and this actually gives Daniel a chance to do it! As all the able-bodied adults who have had a try will verify, it is quite difficult - considering the size of a powerchair, even allowing for that fact that the football is larger. For instance, Daniel has been learning that if he wants to send the ball to the right, he needs to drive his chair round to the left hand side of the ball, so that the ball can bounce off the right hand side of his chair. It is great fun for Daniel, but also brilliant for developing his spacial awareness, and power-chair skills. As always, I am so grateful to the people who give up their time to make these things happen, despite the hassle involved. Daniel will continue to go whenever he is free on a Sunday morning.