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Time flies

Posted Oct 26 2012 12:00am
I try not to get too hung up on the Mitochondrial Disease diagnosis and what that means for Ava's future, but this week was hard. Our Mito community lost a beautiful young woman this week. It really brings things into perspective. I hate this disease and what it does to not only Ava but all children with it. Ava was also diagnosed with immune defiency 2 weeks ago. Hypogammaglobulinemia is the official name. She will likely be doing IVIG monthly now that we have the proof we need for insurance. IVIG is very expensive. We see her Immunologist on November 7th. Alpha Thalassemia is being tossed around a lot at her appt as another diagnosis. Her Iron levels have never been in the normal range. Ever. This is while taking large amounts of supplemental Iron daily. Truth be told, Mitochondrial disease is probably causing some bone marrow suppression. She continues to be J tube fed continuously 22-24 hours a day. She's on a combo of adult Vivonex and Tolerex. They are very high in protein and she uses the Tolerex when sick to help maintain glucose levels. (This last week Ava has had croup and her glucose has been dropping into the 30's on feeds, to give you an idea of what we deal with.)
Cincinnati Walks was last weekend. We were part of Team Tubie. Ava's shirt says "I can eat and sleep at the same time, what's your superpower?"
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