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Not so good news about ds2

43 replies

lou33 · 29/11/2006 14:39

I had a joint orthopaedic clinic appointment for himtoday, to assess his potential for botox and possible multi level surgery. For those of you who dont't know ds2 is 5.5 and has spastic diplegia cerebral palsy, he uses a wheelchair.

There has always been hope that he will be able to do some walking eventually, even if only for small distances, with sticks, but as time has gone on and he has become schoolage, he has got tighter and tighter in his legs, which is a hard one to rectify, as he spends a lot of time in a chair at school, and needs 8 hours stretching a day to make a significant improvement they think. This isnt feasible.

Anyway we went to the clinic to talk abotu the botox jabs etc, and the doctor said to me " i think he is one of these little boys who is going to do really well in a wheelchair, and will achieve good things that way", which is a kind way of saying they dont think he is ever going to walk, isnt it?

They have agreed to try botox tho, but he said he doesnt think it will have much impact, but it wont make him worse

I'm upset.

Plus it is probably going to be done in april, and my OH is leaving the country for good on the 4th of that month, so i will be dealing with it alone.

OP posts:
TeeCee · 29/11/2006 21:44

have you still got my email, i lost all addresses, em,ail me and let's talk tomorrow, TC xx

lou33 · 29/11/2006 21:47

oh yes definitely, will try and sort it, email me on the addy i posted down below mate, dont think i hve yours either now

thanks you

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TeeCee · 29/11/2006 21:59

didn't see that email, ok will do babes.

2shoes · 29/11/2006 22:19

sorry I mistyped my email.
have emailed you.

lou33 · 29/11/2006 23:10

ok tc

replied 2shoes

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RnBee · 30/11/2006 10:14

sorry to hear this Lou

lou33 · 30/11/2006 13:32

thanks hon, how are you?

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dinosaur · 30/11/2006 13:35

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This has been withdrawn by MNHQ at the poster's request.

lou33 · 30/11/2006 13:59

thanks dino

i'm sort of in a daze today, i feel quite emotional about it all, ithink it's hit me harder than i thought

i'm hiding away, even my oh has been texting me asking why i havent been in touch

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lou33 · 30/11/2006 14:00

thats hould say, than i thought it would

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dinosaur · 30/11/2006 14:03

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

lou33 · 30/11/2006 14:31

it feels like that right now dino, i have to admit

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NotSoupyOhNoNoNoShesOnABreak · 30/11/2006 14:35

I meant to post on this when I saw the thread the first time. Nothing to say that's helpful really though.

lou33 · 30/11/2006 14:38

thanks, i will pull my self together by tomorrow and be my normal self i suppose, at least the weekend is approaching

OP posts:
dinosaur · 30/11/2006 15:33

This reply has been withdrawn

This has been withdrawn by MNHQ at the poster's request.

lou33 · 30/11/2006 16:28

and as if my week wasnt bad enough i just got hit by a bus while driving

OP posts:
Blu · 30/11/2006 17:59

Lou - how bloody bloody effing cruel. Oh no. I'm so sorry. What happened?

lou33 · 30/11/2006 18:01

link here blu

it never rains, eh?

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