I haven't mentioned this because we didn't have official results. Now that we do I thought I'd share! We did a bunch of genetic testing to see if we could have a reason for zoeys infantile spasms/epilepsy. We got the news that she may have a disease called Rhett syndrome. Not a disease that we wanted to deal with. Basically she would regress. No hand movements, no walking, no speaking. It was devastating. We then ordered more genetic testing to see how bad it could be.
Sometimes you can miss part of your DNA and it won't affect you. So we did a lot of family time, praying, fasting and a lot of talking. What we had was a miracle. We recieved an email today from the doctor telling us that the first test was a false positive. She is not missing any part of any gene. No Rhett syndrome. While it is annoying not to have a reason why Zoey had infantile spasms, we are glad to not have a genetic disorder that could impact future kids either. What a relief! Zoey has come so far this last year, and is a beautiful happy child. To think she might have lost that was devastating. I know life is still going to be hard for her. It will still be hard for us, but I'm happy. We are happy!
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