Monday, 10 December 2012

Sunday - and we are lazy again!

This morning, as last week, we had a very lazy start, with breakfast in bed. I think Daniel will greatly miss being able to watch TV in bed on Sundays when we get home again! The amazing thing from our perspective was that we sat him up in bed, propped up in bed on his pillows, and in the hour that followed we did not have to prop him up again AT ALL! He just stayed sitting up! This may seem unremarkable to you, but pre-op Daniel would always slide down sideways when sitting in bed, or on the sofa, and we would have to push him back into the centre every few minutes. It was incredible that every time we went into his bedroom this morning, he was still sitting up beautifully!

Once we finally got up, Rich did Daniel's home exercises with him, while Lucy and I did some reading. Then we ventured out into the corridor with the walker once more! He didn't really walk any further than yesterday, because he is still quite weak. A lot of the physio over the next few months will be building strength and stamina, as well as teaching new muscles to work. However,  we could see that he was more fluent and quicker than yesterday. The massive change also was that he is starting to put his HEEL down first when he walks. At the moment he is doing it more with his left foot than his right, but again we can see the potential. This is exciting because children with CP generally walk on their toes; the spasticity makes their hamstrings tight and lifts their heels off the ground. That makes it impossible to walk normally, and also increases the wear on their toe and ankle joints, as well as their knees, and is one of the things that frequently causes them to have arthritis by their 30s. Therefore, part of the changes post-op and now learning to walk is learning to walk 'heel - toe' and is hugely important! As I said, there's still a lot of work to be done, but I was thrilled enough to take this video of his feet.....

You can see that he was also pretty pleased with himself!

This afternoon we went for half an hour at the Science Centre (we couldn't do that at home because it wouldn't be free!) on our way to the supermarket. The children really enjoyed the maths puzzles again.


Then it was home to the apartment for another trip into the corridor with the walker, followed by some high kneeling at the sofa (and Angry Birds, needless to say!) Then tea and bed, since we have our follow up appointment with Dr Park at 8.15 tomorrow morning, followed by 9am therapy with Mad Mike.

Tonight at bed time Daniel had a big cry because he said he will be so sad to leave St Louis. It has been such an emotional, and of course physical journey for him, and he understands the importance of what has happened here. He said he will miss the physios, as well as the Science Centre, Arch, Zoo etc. We had a chat about how great it will be to show everyone at home what he can do now, as well as to see friends and family, and of course school that he has missed. We also talked about how we will be coming back to St Louis in a few months to a year (that is part of the commitment you make, is that you will return for the child's progress to be reassessed). Daniel suggested that maybe we could go home for Christmas and then come back here in January! Oddly enough, Mummy and Daddy didn't think that was the best idea - he might have forgotten the joys of the flight out here, but I haven't!!

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