As I mentioned in a previous post... Maggie has been run through many tests. The worst test we endured was the genetic tests they ran from Maggie's blood. Especially since the Geneticist was specifically looking to test Maggie for Angelman Syndrome
We left the Geneticist office with the instruction to have blood work done.... then we were supposed to wait until the tests results were sent to our doctor. The test itself takes about a month to run. Meanwhile, I begin researching about Angelman Syndrome, and while the diagnosis is questionable... I couldn't get out of my mind the fact that most children with Angelman Syndrome will NEVER talk.
So, we waited... we cried... we waited some more... I looked at my precious little Maggie and prayed- wondering what God's plan is for her... then we waited some more. It wasn't until we went to our pediatrician for Maggie's check-up (4 months after the test has been run) that we found out the results of the genetic tests were NORMAL!
At this point in our life we made the decision that, for now, we are DONE with tests. The emotional toll it has taken on our lives was not worth it. If Maggie does have a syndrome, which she has tested negative to them all, there is nothing we can do. We can learn more about the facts of the syndrome, but we can't cure it. We were also just a month away from having our third baby, and it was time to just live, laugh and love!
Wednesday, November 22, 2006
Genetic Test Results
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Hi, I accidentally came across your blog when I googled potty training kids with hypotonia. I have an almost 3-year old daughter with hypotonia who spent the first 3 days of her life in the NICU (7 lb. so I understand what you mean about being a big baby in the NICU). And then was re-hospitalized at 1 month with breathing problems. They also tested for Angelman Syndrome and we waited 3 months for our result as well and I totally understand the waiting and crying. Our results came back negative as well and we also decided to do no further testing. I've so enjoyed reading your blog as I can relate so much to what you have written. It's nice to know there are other mom's out there who can relate. Your daughter is beautiful!
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