We've made the move to OU Children's Hospital. It's a completely different environment, but then again, we didn't pick this hospital for its paint scheme or floor plan and layouts. Ellie's geneticist saw her last night at 11:00 PM, so the move has already shown itself to be beneficial.
As some of our first updates stated, Ellie's disorder is devastating. NonKetotic Hyperglycinemia (or Glycine Encephalopathy) is an extremely rare metabolic disorder that is destructive to the body even when on an aggressive medicine regime. I lead with that to say this: Ellie is experiencing more and more seizures. They are coming harder and longer. We are adimently trying to counter them with the appropriate meds but this is proving difficult.
We are still fighting for our daughter. We love you and thoroughly appreciate your prayers, thoughts and support.
- MFM
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