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i knew this really but hearing it officially is not nice

(19 Posts)
lou33 Sat 01-Aug-09 17:27:30

on thurs it was said that ds2 will definitely not walk , and it is now a case of managing him to make sure he does not get worse , rather than trying to get him up and about

i think it is properly sinking in today

Hassled Sat 01-Aug-09 17:30:55

I'm very sorry. Yes, hearing that must have been like a kick in the guts.

lou33 Sat 01-Aug-09 17:48:18

i am surprised by my reaction, as like i said, i knew this was most probably going to happen

even so...

sarah293 Sat 01-Aug-09 17:51:37

Message withdrawn

Mitchell81 Sat 01-Aug-09 18:06:44

Sorry that you had to hear that. It is hard to hear. DD is 8 and we were told along time ago that she would never walk as she can't move her legs. It is a horrible thing to hear.

Mitchell81 Sat 01-Aug-09 18:07:42

Sorry should preview. to many to hears blush

Phoenix4725 Sat 01-Aug-09 18:08:09

i bet its hard ,Ihad few tears when realised that yes ds does walk of a fashion but he is always going to be reliant on a wheelchair was the going from sn buggy to chair that did it for me.
But have to admit ds is so much happier with it and think the thing that disables him more than anything is his lack of speech and understanding oh and pfb in the wheelchair spaces and idots who park on the dropped kerb

lou031205 Sat 01-Aug-09 18:24:02

lou33, I am sorry you had to hear that. It will take a while to sink in.

TotalChaos Sat 01-Aug-09 18:25:36

sorry you've had gloomy news Lou.

lou33 Sat 01-Aug-09 18:35:12

spastci diplegia cp riven

i know he will have a good quality of life and all that, it's me who is bothered not him

i will be fine again once its processed

i just had a v stressful week or so and this was hte last piece of news thats all

sarah293 Sat 01-Aug-09 19:21:21

Message withdrawn

Phoenix4725 Sat 01-Aug-09 20:20:27

hope you got yourself some wine and choclates and give yourself time to cry if needs

lou33 Sat 01-Aug-09 20:41:03

wine yes

he has had a chair for eyars and i felt relieved about that

the only option is putting him through a long and complicated op,. which only has a small chance of working

and even if it does he would only be able to take a few steps with sticks across a room

he would still always need his chair

and i dont think it is worth it for a maybe

he will hope he would wake up and be like his brother and i think it would be v hard for him to handle when that didnt happen

botox is of no use, so that is that really

of course he will be fine and have a good life but i just need it to sink in

Phoenix4725 Sat 01-Aug-09 21:09:22

Hope he can get a power chair if he does not have then can chase run other dc over

lou33 Sat 01-Aug-09 21:32:57

he has one for school but he cant have one at home til we get the doors widened

thats been promised for ages so my pt is gonna kick some arse about it, because atm he has to crawl everywhere, and at 8 he should not have to

LollipopViolet Sun 02-Aug-09 13:24:18

Hi Lou,

I have no direct experience of CP, but you're absolutely right, your ds will have a good quality of life. My friend H has the same kind of CP and is also a full time wheelchair user. She did go to an sn school but that's because this area is awful for wheelchair access in schools- they're all old! She's been away lots with school and doesn't let the chair stop her. She has had a lot of surgery, and has had some good, some bad results. Some have helped, some haven't.

Definately kick off about your doors though, that's terrible.

Actually, can I ask a quick question? My friend was in a Major til she was 9, is that normal or do children get their first chairs earlier now?

Phoenix4725 Sun 02-Aug-09 17:26:29

Lollipop

ds has just got his first chair at 4.

Woooozle100 Sun 02-Aug-09 20:40:03

look at my profile pic. DD got hers at 3

I know its something she's always going to need so thought it was better to go straight to wheelchair

Cmon now, someone trump up their 1 yo has one grin

<pours lou33 a nice wee drink> sorry this news was the proverbial straw.. like you say, it is always worse when stuff is formalised. Hope you are feeling better today

lou33 Tue 04-Aug-09 12:58:08

ds got his about 3 i think

ds goes to a mainstream school, they spent about 350k getting it accessible to him and another child, and they also spent a lot of money at his previous school

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