Sad News.
I've recently (as of last week) learned that most of her specialists believe that Dottie has an undiagnosed genetic disorder. Obviously this has been heartbreaking news to me.
A microarray was ran on her in the NICU, which is a genetic that looks for any obvious genetic abnormalities like Down Syndrome, which she doesn't have, and that microarray came back normal.
At that point I thought that we were out of the woods concerning a genetic disorder, and I've come to find out that we are not.
Her geneticist wants to run a couple of tests that she believes our insurance will pay for (still pending, so it's not 100% they will be covered), but the test her geneticist REALLY wants to run is the most detailed one that can be done. The microarray basically told us that Dottie has all of the correct books or genes, the test insurance won't cover looks at the sentences in those books, so to speak. This test is not currently covered by health insurance, and runs about 8-10 grand.
I'll be contacting her geneticist's office to obtain as much information regarding this test as possible, as well as searching for any grants or charities that may help us with with the cost of this test.
The more we know about whatever genetic disorder Dottie has now, the more information we have as to what her future holds, both good and bad.
I ask that once again you all please share our link and story as much as possibles, as our precious girl deserves the chance to live the fullest and happiest life as she possibly can, and this expensive test is just one of the first steps to getting her there.
Thank you all for your continuing support and love.
A microarray was ran on her in the NICU, which is a genetic that looks for any obvious genetic abnormalities like Down Syndrome, which she doesn't have, and that microarray came back normal.
At that point I thought that we were out of the woods concerning a genetic disorder, and I've come to find out that we are not.
Her geneticist wants to run a couple of tests that she believes our insurance will pay for (still pending, so it's not 100% they will be covered), but the test her geneticist REALLY wants to run is the most detailed one that can be done. The microarray basically told us that Dottie has all of the correct books or genes, the test insurance won't cover looks at the sentences in those books, so to speak. This test is not currently covered by health insurance, and runs about 8-10 grand.
I'll be contacting her geneticist's office to obtain as much information regarding this test as possible, as well as searching for any grants or charities that may help us with with the cost of this test.
The more we know about whatever genetic disorder Dottie has now, the more information we have as to what her future holds, both good and bad.
I ask that once again you all please share our link and story as much as possibles, as our precious girl deserves the chance to live the fullest and happiest life as she possibly can, and this expensive test is just one of the first steps to getting her there.
Thank you all for your continuing support and love.
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