Wednesday, May 20, 2009

I needed to know and now we do.

This has been a long journey that I wish had a different outcome. Monday Rylee was diagnosed with Mitochondrial Myopathy her biopsy came back positive. Part of me is relieved that the testing and wondering is over. The other part of me is heartbroken, there is no cure. Those are hard words to swallow. We have started her on coQ10 and carnitine. There is no proof that either of these does anything. Hopefully it will slow the progression of the disease. We also learned that the non-breathing episodes are probably seizures. We have to decide if we want to go back in to do more EEG's in a sleep lab to determine if these are also happening at night time. For two years I have been holding out hope that she will start to gain weight and things will turn around and this would just be a distant memory. Those feelings got me through the day. Now I feel as if that is gone. None of this is easy. Please pray for our family. Sorry this is so short but this is all I have to give right now. I hope to come back and update more in the coming weeks. I will definitely update about Jamaica later in the week.

1 comment:

Jenny G said...

I'm praying for your family. I wish there was something more I could do or say. Please let me know if there is anything else I can do/say. I'm sorry.

I'm a bit of a daredevil

About Me

I'm a Mom of two wonderful children, Andrew(4) and Rylee(1). My husband and I are originally from NY and moved to FL 6 years ago. I love it here and won't move back but this is where I live my home will always be in NY. When I die someone better fly my ass back there to bury me. I love hanging outside with the kiddos, sports, working out and taking pictures.