Wednesday, September 22, 2010

I know it's been a long time...

Sorry it has been so long, we had a rough summer with Owen. The heat took its toll and we spent most of our days indoors. Owen was also diagnosed with a stomach condition called eosinophilic esophagitis....basically every food he eats makes his stomach feel "pukey and pokey" in his words. We are now battling chronic stomach pain and headaches, he also had his diet restricted more so now we are dairy,egg,soy,beef,all nuts and gluten free. On the positive side of things he has started kindergarten and is doing awesome, I do have one smart little boy I must say. We went back to our mito specialist at Cleaveland Clinic and he wants to do another muscle biopsy there on him. We are awaiting insurance approval our it would cost 22,000 dollars. The reason for another biopsy is the first one is so abnormal he wants to get more and better info. They are also doing a blood test to rule out Myotonic Muscular Dystrophy causing his mitochondrial disease. We are waitng for insurance approval for that test as well.....if you know me I HATE WAITING.
Scarlett turned 2 and is fiesty as ever. She is my beauty and I love her so much. Her health has been fine so far. We sleep on the floor of her room together alot and I look over at her and my heart melts. God delivered this special little girl to make me smile when I need it most.