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I'm struggling with dd2 - I know you ladies have it much harder than I do!!!

(3 Posts)
weegiemum Mon 07-Sep-09 14:01:42

I feel a tiny bit bad posting here, though SN has helped me a lot in the last 18 mo,

My dd2 (who is 5y10m) has Perthes disease, a (thankfully) self limiting hip problem. She doesn't feel pain (often) but (though capable of all of this) is not allowed to hop, skip, jump, run, dance, walk for more than 5 mins at a go - in every hour.

We had hoped, last week, that she woudl be given the all clear.

But sadly she has been diagnosed with slow Perthes, which means we are looking at another year of her being wheelchair bound at school, no activities, buggy for outings, etc etc etc ..........

She's really good about it ...most of the time. But her desire to jump and dance takes over a lot.

She knows she is lucky that she won't always be in a wheelchair. She is very appreciative of the time she can walk. She knows that if she doesn't comply, she needs to have an operation.

I am weeping at the thought of it, though! I know most of you mums on SN have needs that will never go away (thinking of Riven - one of the ways my dd got used to her chair was that she was so happy looking at MN pics of her dd - she wants to be "big and happy" like Riven's dd - made me cry even more!!)

My dd tries so hard!! Is there any way you can think of to make it easier for her to look at a wheelchair for another year in a positive way? I know I am BU here, as any of you with a mobility issue kid is facing much more thn we are. But I don't knwo where else to ask, when my 5yo is sitting on my knee sobbing that she can't do gym or play out in the playground .....

And I have so much respect for you all. My dd is temporarily (3 years we reckon) disabled. How do you cope - I don't know. But You are very much in my thoughts!!!

weegiemum Mon 07-Sep-09 14:10:51

these threads drop off active very quick, don't they?

ChopsTheDuck Mon 07-Sep-09 14:51:34

I'm probably not a lot of help, because ds hasn't been using his chair that long and we are only really starting to think about these.

It sounds like she could do with meeting other children that use wheelchairs. I think it can be isolating for children. I've notice how often children using wheelchairs stare and stare at ds in his. Maybe a kids wheelchair training course? I know whizzkids do them.

We go to a playground near Taplow, that is wheelchair accessible, and where there is tons to do even while using a chair. Ds likes it there, because he isn't the slowest any more, or the only one that needs a chair.

I am sorry to hear you didn't get the news you were hoping for.

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