Saturday, 28 December 2013

Practising lying still

Joel getting into position in Bristol

The week before Christmas was a hectic one. It started with Monday and Tuesday in Bristol so that Joel could practice lying still again. He had been practising at home with his mask which was made a couple of weeks ago during a previous Bristol trip. When his mask was first made, he managed to lie still in it, clipped down for 15 minutes. With more practising at home, this time he managed 29 minutes. He did brilliantly, with a little help from the 'Ice Age: Christmas Special' which I'd downloaded onto the ipod. Unfortunately we've since found out that when he's having his treatment he won't be able to watch a DVD, but will only be able to listen to an audiobook or music. He's now struggling with this, so this week is going to have to be some intensive practising. We've tried Peter Rabbit, Peppa Pig, The Twits.. no good, none of those are working for him. I've just downloaded an hour long meditation for children and have high hopes!

Joel was also taken into the X-ray room so that he could practise being around different equipment, and experience moving machines. He struggles being on his own, yet he needs to practise this as I am not allowed to be in the room with him in America. It was suggested that we try a long ribbon where he holds one end, and I hold the other, so that we can tug it to 'communicate' with one another.

The practising is really important, as if Joel cannot lie still for around 40 minutes for each session, then he will need to have a general anaesthetic. This would have to happen every Monday to Friday for six weeks. He would first have to have surgery to have a hickman line put into his chest. He then would not be able to eat for 6 hours prior to the general anaesthetic every day, and he would not be able to swim with the hickman line. He would be in hospital for half a day Monday to Friday, whereas if he can lie still and not have the general anaesthetic he can get away with a couple of hours a day in hospital, with the rest of the day to do other things, with no restrictions to his food intake! A hungry Joel is not a pleasant experience. He eats constantly as he quickly runs out of energy.

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