About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Wednesday, July 9, 2014

A possible answer with millions more questions

I finally called back the geneticist today. They left a message for me to call them back a couple weeks ago and I just now am taking care of it. I kind of figured it was the results from Matt and I's genetic test. I've always felt like this might help us find a name for Jayen, but not sure it would really help us fix anything. When we met with Dr. Mendelsohn in March, she told us about the abnormality they found on one of  Jayen's genes. They wanted to do the same genetic test on Matt and I to see if we carry the same gene. Well today, I was told that neither one of us carry that mutation, so it could be an answer to Jayen's seizures. They wouldn't really explain a lot over the phone. They are going to get us in for an office visit when we are up there in a couple weeks. This will hopefully give them enough time to talk this over and figure out what they would like to do.
I pulled out the paperwork they gave us last time and sent the information to Matt. He was able to google a little about FOXG1. A lot of the information he found does describe Jayen. But some does not. I'm not sure what all of this means for Jayen, his future, or his treatment plan. I'm just trying to soak this all in and write down the questions that are popping in my head by the second. Hope this only brings good outcomes for Jayen!

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