Shriners Hospital

I realized I never gave a Shriners update. I took Nellie over to Shriner's hospital about a week ago. Nellie was diagnosed with scoliosis about 5 years ago. Her scoliosis has progressed aggressively over the last 3-4 years. She is now considered to have severe scoliosis and has a 54 degree curve. Nellie definitely needs to have spine surgery, the problem is she is still small and has a lot of growing to do. They would need to put growing rods in her back, but every time she grows they would have to go back in and extend the rods. This could potentially mean 2 surgery's each year until she is about 14 or so. We are now trying to hold off doing the surgery until she gets a little bigger. This will be a major surgery, they will go in through the front as well as her back. Her brace is helping her curve to stay at 54 degrees, she hasn't had change in a year. Last week they said she is the same an we couldn't ask for more. If we can keep her the same until she is about 14 they will do a fusion and we won't have to deal with the growing rods.

It has been terribly hard dealing with Nel's scoliosis. The brace is uncomfortable and it is hard to fit her clothes with it. She already had problems with her balance and a big plastic brace doesn't make it any easier. The other issue we have is her strength, Nellie is very weak and when she is wearing her brace she isn't using any trunk muscles so she actually gets weaker from wearing her brace. I know she will be fine, she'll get through this, we all will. It makes me sad as her Mom, life can be hard for Nellie. We just have to remember how blessed we are, there are millions of families that trade problems with us.