It's been awhile...

I have had several people ask me why I have not written in so long. I think Owen's situation overwhelms me at times. When you have mitochondrial dysfunction there is not 1 doctor that does everything. We are always seeing our different specialists to keep tabs on how he is doing. Owen is doing extremely well, compared to other children who have this disease. We have had another muscle biopsy at the Cleaveland Clinic, its showing his mitochondria do not work right. There are only 2 places in the country to have a correct biopsy done Cleaveland and Atlanta. We did not know that, or we would not have done the one here orginally. Owen still fights his battle with fatigue, "tired legs", chronic headaches, chronic stomach pain etc....BUT he does not let it stop him as some of you saw during the holidays. I want to stop him but I am learning to let him make decisions for himself. He is looking at possible sinus surgery coming up because he is on a constant antibiotic for sinus infections. The ENT did an extensive workup, his immune system works but at the very low end of normal. He was also tested for cystic fibrosis due to slow weight gain, chronic sinusitis and it came back borderline. I do not quite understand that but he is being restested. We are going to Cincinatti in Feb for a week to find out if we can help his stomach condition "eosinophilic esophagitus"....biggg word huh? It is basically chronic stomach pain due to an allergis response from food etc. I guess this is why I have not written. I feel defeated some days because he lives at the doctors. Alot of people do not understand this but when you have a multisystem disease, you see the specific doctors for that condition. We see neurology, allergy, ENT, GI,cardiology,endocrinology etc...
Owen is kind of "done" in laymen's terms, no more he wants to scream. I scream it too when nobody is around but what am I supposed to do????? I have learned this is what we have to do, to stay on top of this illness. I have also learned it could be worse and be thankful it is not. Owen is an amazing,smart, beautiful child! I am proud to walk this walk with him and fight this battle.