Sunday, May 26, 2013

Test results

WOW!!! It's been way too long since I last posted. Life has just been crazy! Chad left for Texas for a week... A week of taking care of Leah and three other children alone is madness, Leah alone is a two person job. But, I made it thanks to wonderful parents and in-laws. Then I got sick and at that point I realized I just can't ever be sick to keep up on this life especially being sick for over a week and the week my parents went out of town.

We got our test results back. It showed that Chad is the carrier of this gene GRIN2A. As a result of this news it makes it difficult for the doctors to figure out exactly what's going on with Leah. As for now we are going to continue to treat her glutamate channel with serine which is another amino acid. When the cells receive serine it triggers the glutamate channels to open up. We are keeping a journal and reporting daily changes. Changes we have seen after being on the serine for a week now are: She is moving her head to look at us when we call her name or shake a toy (this is HUGE). I can't even describe the joy that we have felt when she turns her head to find the person talking to her.  She is very alert and is giving great eye contact, She is kicking her legs a lot, she has more expressions on her face. She is also making little noises (we haven't had that for almost a year). We are absolutely thrilled with this recent progress!

Having an answer and knowing Leah's condition has been a big relief! We have prayed for a year and a half to get an answer. I still can't believe we got an answer. I never thought that day would come. We feel like we can move on in life. We sleep better and our brains aren't going 100 miles an hour trying to figure out Leah...We just simply adore this little girl! We love who she is! She lights up the room! I am so honored to be her mom. This past Mothers day was very emotional for me. I couldn't stop thinking about a poem I read. The last sentence in this poem is says "God hand picks mothers for these special children". God trusts me with Leah. I am so honored!

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