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arthrogryphosis

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woc
Mini Wolly
 
Posts: 156

arthrogryphosis

Postby woc » Tue Aug 25, 2009 1:26 pm

HI,
My daughter was born with arthrogryphosis in December last year and I am wondering if anyone knows anything about it or knows of anyone with it. She is doing really well with her splinting programme but the biggest concern is with her knees. Has any one any experience with this.
We have been taken on my Enable Ireland and they are been really really good to us.
I'm finding it hard to take myself and feel really really sad from time to time. I also suffered from PND but I am medication now for that and it seems to be improving.
DD is such a joy, I know I shouldn't feel sad about her, she is a very happy contented baby but when she cries it breaks my heart. Its like she is crying and I just don't know what is wrong with her. As far as I know she is not in any pain from the condition. I am obsessed with her bottles, even though i have started weaning her and she is on three solid meals a day. Thanks for taking the time to read this and if anyone can offer me any advice I'd really appreciate it.
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SGirl
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Posts: 2542
Location: The planet zog

Postby SGirl » Wed Oct 21, 2009 6:29 pm

Cant rally advice you but i find the ROLLERCOASTER website special needs section really useful for discussion.
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snowbear
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Posts: 2107

Postby snowbear » Fri Nov 20, 2009 11:26 pm

Hi there, I know someone with this condition. There is an Irish arthrogryposis association, you can get in touch with them through
www.arthrogryposis.ie. Lots of advice and contacts there... best of luck with it.


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