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Posts
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.
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.
27 October 2009 at 11:12
I've been slacking off in my comments lately, sorry. But I'm keeping you and Deion in my thoughts and prayers. Hoping you get some answers and some solutions soon.
27 October 2009 at 14:10
Good luck with all the testing and I hope the results are encouraging.
27 October 2009 at 15:08
I don't know how you do it? When I've read about some of the treatments they've done with Autistic kids (chelation) I just cannot even fathom putting Abby through it. Not that it's been brought up by docs, it's just my own research.
But it sounds like these tests just can't be put off. I hope you get some answers and Deion is better for it in the long run. He seems like one tough cookie. :) XO
27 October 2009 at 16:12
i'll be thinking of you guys...
27 October 2009 at 19:14
Always thinking of you guys. Deion is such a trooper. Such a strong kiddo, guess he gets it from his super strong momma! Hope you get some answers soon!
28 October 2009 at 13:12
thanks everyone, its nice to know you are thinking of us, Deions certainly keeping his chin up and staying positive, i'm getting there xxxx