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Old 09-02-2011, 08:51 PM
Shannan_Breanna Shannan_Breanna is offline
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Join Date: Feb 2011
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Question Disabled daughter needs surgery......

Hi everyone,

We are looking for advice, good or bad, our daughter has a brain abnormality called Lissencephaly, she is unable to talk, sit, roll, crawl, walk etc. and never will be able to. She also suffers from epilepsy, increased muscle tone, requires suctioning and is fed via a PEG. Despite all her medical issuses she is a beautiful, happy little 7 year old. Our surgeon told us at the start of the year that she is going to need surgery (growing rods) sooner rather than later. We know that if she doesn't get the surgery it will probaly shorten her life expectancy as it will affect her lung function, but our other concern is the amount of pain she will be after the surgery. She also had double hip surgery in 2008 and that was VERY painful. We would like to hear from anyone that has been in a situation similar to ours, as we would like to take on everyones experience before we make this huge decision.

Thanks
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