8 Out Of 10 Casts

Yesterday Reuben had his 8th spinal cast procedure at Manchester Children's Hospital. Everything went really well, he said cheese for the x-ray and didn't complain at all about being nil-by-mouth. The worst bit for him is taking the old cast off, he doesn't like the noise or the vibration of the saw on his back but once it's done he has a nice warm bath and then gets prepared for theatre again. It took about 2 hours before we could go and get him from recovery and he came back to the ward straight away which was great, usually he's too cold or his heart rate is too high and they have to keep him there for a while until he warms up and settles but this time there were no problems.
The x-ray shows his biggest curve is now 45 degrees. They mentioned surgery when he is about 4 years old to put growing rods in his spine but I really don't like the sound of that, we were hoping that the casting would prevent the need for invasive surgery so we'll just have to wait and see what happens. The x-ray did show a marked difference in his bowels than that of 6 months ago, something we will be talking to gastroenterology about on Monday, he's had problems over the last few months with unexplained diarrhoea and weight loss with no obvious cause so again we'll see what happens.

Reuben's portage worker came this morning and helped him do lots of matching exercises, sorting, colours and numbers and he worked really hard and enjoyed the tasks

This afternoon he has speech and language therapy too - a busy day for him, especially after yesterday he is a bit wobbly on his feet getting used to the new heavier cast and he's dosed up on painkillers because he's really achey and uncomfortable but he does like to keep to the same routine every week so we knew if we cancelled the appointments he would be feeling very disorientated and anxious so we've kept everything as it is normally.

Here is Reuben in his new cast - this time with a square at the front looking like a teletubby :) later on we have the task of putting all the padding and tape around when it is completely dry to stop it rubbing his skin - a very time consuming task if he doesn't feel cooperative but it has to be done!

 

This is how Reuben's back looks now looking down from the top while he was in the bath

 

Our collection of 'lampshades'

 

On Monday we had a visit from occupational therapy who measured up the back door for something that will help Reuben be able to go outside without falling over the step so much!

He also had a measurement fitting at Broadoaks with Orthotics on Monday for his helmet which will hopefully prevent any more A&E trips from bumping and cutting his head! The weight of the cast and his condition with his hands mean that Reuben falls over a lot and when he does fall it's always straight on his head causing bumps scrapes and cuts frequently so the helmet will protect him a bit more :) He's to go back for his 2nd fitting in October when it will be half ready and then a final fitting when it is ready.