It was tough when the diagnosis was made wondering if I would outlive her. She has been blessed with perfect parents for such a regimen she goes through on a twice daily basis and advances that have been made are amazing.
Diagnosis was tough as neither one of the mutations she has showed up on Utahs newborn screening panel (her parents were going to BYU at the time). Since then 4 of my kids were tested positive for the specific mutation on our side, 2 are negative and one has opted not to be tested.
Thanks for "coming out". CF is a subject near and dear to our family. Good luck and best of health to you. I suppose on the bright side you can gorge yourself on all the high calorie foods you want