Thursday, July 21, 2011

Waiting game and other odds and ends

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!  :)

The Scott Family

1 comment:

  1. 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 :)