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Old 09-02-2011, 09:51 PM
Shannan_Breanna Shannan_Breanna is offline
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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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Old 14-02-2011, 10:04 PM
Dom's mum Dom's mum is offline
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Default Re: Disabled daughter needs surgery......

Hello, I am no help to you personally as our circumstances with our son were different but I just wanted to say I am thinking of you. You and your daughter have been through so much and you have a huge decision ahead of you. I guess all I can say is get the medical opinions, make sure you feel comfortable with the care you have and put your trust in their guidance.
Take care
Annette
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Old 15-02-2011, 09:10 PM
Jen Jen is offline
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Default Re: Disabled daughter needs surgery......

Shannan, you are another wonder-Mum. I know, it's because you have to be and you'd rather not have to be, but you are. I can't help you with much information but I just wanted to wish you and your little girl the best of luck for a bright and happy future. We are fortunate to have Dr. Scoliosis here to answer questions, if you would like.
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Old 16-02-2011, 11:52 PM
LynBB LynBB is offline
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Default Re: Disabled daughter needs surgery......

Hi Shannan...... what a huge decision sounds like you have already had to endure more than your fair share of pain. Although my daughter has no other disabilities bar the scoliosis I have seen her lung function deteriorate over the last 12 months (she sounds like me after I've run up the stairs lol.) I did see a newspaper article ( Herald Sun Melb ) in relation to a young girl who had similar disabilities to your daughter and had the stapling done as opposed to the rod in her spine which was very succesful and recovery quicker. Anyway all the best for you and your daughter and make sure you look after yourself.
Cheers Lyn
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