Saturday, 22 December 2012

5 weeks post op....nearly Christmas!

The first week at home has been a bit of a blur, to be honest. In some ways it was lovely to return just in the final build up to Christmas, but it was also decidedly peculiar arriving back into school in the last week of term. Lucy went back to school on Monday (with a bit of a late start). She was delighted to go back, although exhausted (but then, being the end of term, most of her classmates were too!)

Daniel has not officially been back at school this week, but as ever it has been difficult to keep him away. He went in on Monday afternoon for his class Christmas party, and walked into his classroom for the very first time, to stunned silence from his classmates! This is him in the corridor, just about to turn right into his classroom and surprise everyone.......

He also went in just for the lunch hour on Tuesday - for Christmas dinner.  I had stayed with him on Monday for the party, but on Tuesday he declared that he didn't want to go if I was going to be there. He thought he might hurt my feelings by saying so - he was wrong about that!! I happily handed him over to his more than capable Teaching Assistants and had a whole hour to get some jobs done. Then on Thursday- the last day of term- he went in at the start of the lunch hour and stayed for the afternoon. When we arrived he walked all the way from the entrance of the school round to his classroom! Being the lunch hour there were quite a lot of people about and he had several sets of clapping from groups of older childen, plus staff coming out of the staffroom to see him, the ladies coming out of the office etc. All in all he was clearly chuffed with himself. When we reached his classroom, I then lifted him into his wheelchair to go off to the Dining Hall for his lunch, and I left!

To be honest I have been extremely grateful for those few hours for which Daniel has been in school because he has otherwise been at home all the time, and we have of course needed to get the physio regime started, which has left a VERY small amount of time to get ready for Christmas! Please accept our apologies if you usually receive a card from us and haven't this time.

Our other difficulty has been that Daniel in particular has been extremely jet-lagged. He has been waking up just as Rich and I have been about to go to bed (sometime between 10 and 11pm) and has then been awake until at least 2am! This has been depressing for us, when we have still had to get up in the morning, especially once Rich returned to work mid-week. This photo was taken at midnight on Wednesday night, when I ended up bringing him downstairs, so he was sitting on the sofa watching the Disney Channel. The photo does allow us to celebrate the lovely relaxed legs though...

About 2 hours after this was taken, when he was back in bed, he was sufficiently bored that he managed to wobble the second front tooth enough that it finally came out (as you might spot in later photos!)

Daniel has otherwise been working hard in his sessions with his physios (currently he is having 2 sessions each week provided on the NHS and 2 private sessions). The major focus at the moment is on building strength, particularly in his trunk.

We have also worked hard at the home exercises and have enjoyed watching the tiny improvements we see all the time. This photo shows today's new achievement...

We have continued to try to get him to use his walker round the house...

This week he has started to be able to lift his walker a little to turn it, which is more progress. It takes quite a lot of lifting to make a 90 degree turn and we are still helping with that but he can now lift it a little and adjust his direction, which is great. Eventually we will unlock the front wheels so they swivel, but he is not strong enough for us to to do that yet.

We continue to work on teaching him to transfer from his walker to his gamma chair, to sit at the table etc.

Daniel is not experiencing much pain at all in his back now, unless he happens to be moved suddenly or to sit a long time in the same position, eg in the car seat. His back is healing very nicely. In this photo you can see the main SDR scar (the dip in the middle is where the vertebra was removed - this will take about 5 years to re-grow). You can also see the smaller scar (at the bottom of the photo) from the epidural.

His legs are also starting to heal, although he is still getting some pain from his hamstring surgery, especially when we try to stretch his legs. In fact we are still struggling to get anywhere near a decent stretch, particularly with his left leg. Of course the hamstring surgery was done nearly 3 weeks after the SDR, so it's not surprising that it is behind in the healing process, and hopefully the stretching will improve when he is in less pain.

So, that's it for now. I will update again in another few days, but in the meantime HAPPY CHRISTMAS to everyone!

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