As you may remember, we took Claire to Duke in April to have some genetic testing done. Unfortunately (or fortunately) we have not heard anything back yet and it's been 3 months. I understand that genetic testing takes time, but 3 months seems pretty adequate. Duke is supposed to be sending the pathologist in Seattle my blood/DNA, Trent's blood/DNA, and tissue samples from Claire's liver and skin to test for the ABM. He has been wonderfully patient and understanding and helpful. I just wish Duke would send the stuff to him!
Usually I am a pretty patient person, but my patients is somewhat running thin with waiting for these test results. In a sense, I really want to know the answers. But at the same time, I really don't want to know. I have emailed and called again (I am sure they are sick of hearing my name come up!), so hopefully we will hear some sort of update on progress soon.
On a good note, Claire will be 7 months old adjusted age tomorrow! Time sure is flying by! We are truly blessed and thank God every day for Claire. We try not to take a moment for granted with her.
Coming up in August, Claire has her 3 month check up with the liver surgeon and her first liver ultrasound since the surgery. I am anxiously awaiting this visit too with the same apprehensions as above on what the remaining cyst is doing and if any other ones have developed. She also has a cardiology check up in August.
Claire was visited yesterday by Maggie and Marcie. They brought over a bunch of books for Claire's "library" as well as a pink John Deere bag and angel teddy bear. Claire told me how much she enjoyed their visit! They even got a chance to hold Claire! :)
Love,
The Scott Family
Waiting is no fun. I hope you all get answers soon. Whatever they are, we are all here for yall and for Claire. Its gonna be just fine :)
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