We went to the geneticist on Monday. Dr. Allen gave Olivia a simple physical, asked us lots of questions, and let us ramble on about anything we could think of that we thought might be pertinent information. Bascially the same as the other two visits to the geneticist.
He wants a few more blood tests and wants to bank some DNA for later. We will go Asheville to the genetic lab to get the blood tests, so we make sure they get the right tests and to make sure the test results actually get to Dr. Allen (we've had problems with this before...).
I asked if he had an idea of what he thought Olivia's diagnosis was. He said no. He said that maybe Olivia has a condition that is brand new.
Our girl is an original.
1 comment:
oh dear...thinking of you guys and remembering all too well our similar journey. It is hard to wait and not know. I know you've been doing this for a good while now. IT took 3 years for us to get the dx...and even with it, it gave us very little new info we didn't know already, except a formal name.
I won't lie. It is nice to have a real diagnosis and no more guessing games. But when there is not any treatment, or even really any research one way or another, you just scratch your heads and wait for them to find something one day.
That is my prayer each day. Find something one day.
Lindsey
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