tests, tests and more tests  

Tuesday, 27 October 2009

Poor old Deion's going through it at the moment.

I have written posts about the uncertainty surrounding Deion's condition before, and the reason I haven't spoken about it for a while, is simply because there has been nothing new to tell, no new news, no results. It's a bit like having something hanging over us, actually, its exactly that.

So our lovely, lovely consultant has been pulling some strings to get some stuff done. It means that Deion is going to be spending most of his half term back and forth to hospital appointments, but I'm sure he'll think of a way to compensate this hardship...its gonna cost me i just know it!

Deion had his hip and knee x-ray on Friday, as he is in some pain, we need to know why. We have a full physio assessment today, later this week, we have a meeting about botox to loosen his thigh muscles, a neurology appointment to discus a muscle biopsy, some investigations about the deterioration in his swallowing, and we need to figure out how to get two litres of fluid a day into a child that cannot swallow liquid effectively any longer.

What fun!

I know I'm not ready for a couple of the suggestions they are going to make about Deion's swallowing, they are not happy that we have to get so many calories into Deion, and maintaining is weight is harder all the time.

Hopefully we will get some answers this time. I have to remind myself that deion is tougher than I think. Whatever happens, I know he/we can deal with it.

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