Thursday, April 12, 2012

NIH report

I was so happy to look on my porch yesterday and see these two packages.

These are our official reports from our visit to NIH.

I left NIH in November with some information but I've been waiting for these reports to get the complete wrap up of all we did there. The reports where really well put together and easy for me to understand. Most of the information was what I had already heard but it was interesting to read through it all.

The one thing that really stood out to me was the opthamologist noted that Lauren has mild retinal degeneration in both eyes. He was not that clear with me when we talked at NIH so it took me by surprise a little. I am grateful that her eyes are not worse at this point but it does lead me to believe that she will be diagnosed with RP in the future.

Although I have known that this was probably what we would be dealing with I had not given it much thought lately. Reading that yesterday made it more of a reality and was a little emotional for me.

Getting the reports was good motivation for me to continue trying to make the needed diet and exercise changes at our house and has given me a better idea of what specialists I need to get the kids into next.

I am still waiting to hear back about the genetic testing we had done. I don't have any idea when we will hear about that so I will just keep waiting.

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