This was Ainsley with the genetic testing kit at the lab in May 2015. We are ready to have answers on this 3 year journey. We have prepared our hearts for the variety of outcomes on Monday, November 9th. We did get a letter on Friday with a specific syndrome listed--I think we got the letter by mistake. It was addressed to our doctor from our insurance company denying a claim for the genetic test. The syndrome just took our breath away because it does not have any thing to do with muscle breakdown, hearing or thyroid. It is something completely out of left field. I called the insurance company on Friday and they verified that the doctor submitted the appeal on October 6, after the genetic tests were in hand--so that is not good news about the syndrome that was listed. We are trying to remain focused on taking Ainlsey to the gulf on Sunday. It will be her first time to see the ocean and then be fully present on Monday afternoon so we can get a plan with the doctor.
Thank you for your prayers for our sweet girl.
"Some things in life cannot be fixed. They can only be carried." -Megan Devine
Psalm 139: 13-14 says "you made all of the delicate, inner parts of my body and knit me together in my mother's womb. Thank you for making me so wonderfully complex! Your workmanship is marvelous-how well I know it." |
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