We know now after 15 months of searching and trying to get an answer we know that Ethan has a Mitochondrial Disease. We are not sure which string/type as we are waiting for yet another blood test result. But the other 6 came back that he has it....
And it all makes sense....the cold hands/feet, the hypotnoia, the fatigue, the developmental delays, the kidney issues, the fact that he just can't get a cold...he ends up in PICU with RSV for 10 days...it all makes sense now.
So we will continue on and meet with a Metabolic Doctor and take a little trip to Atlanta for a muscle biopsy and read and study and read and study and continue our visit in Holland because I have always loved tulips....
1 comment:
I am thankful for you that you have a diagnosis and pray the doctors will have the wisdom to take care of your sweet baby the best way possible.
Post a Comment