Averie Elizabeth

Averie Elizabeth

Who is Averie?

Averie passed away Sunday November 13th at 3:33am due to complications of her mitochondrial disorder. My beautiful princess is finally healed and in heaven with her brother :)

Averie is a crazy, beautiful, smart energetic 7 year old who keeps everyone on their toes! Averie has been fighting Alpers since her first seizure in 2004 at the age of 4. Her older brother passed away from Alpers when she was just 1. Just recently she became a big sister for the first time! Averie is strong willed and stubborn...I believe that's what keeps her going on the days her disorder creates obstacles for her. She is my special little girl who I love one cow, two moons and three fences big!

Saturday, August 20, 2011

...emotions run high

So we met with neurology this morning...obviously the pentobarb coma works while she is in it, but when she comes out the seizures start again :(  So the new plan of action is to get her breathing on her own again, get her off some blood pressure meds and start pushing phenobarb levels higher and higher over the next few weeks. They don't feel its necessary to keep Averie at Stanford to do that, so my guess is we'll head back to Spokane as soon as she's stable. We will also leave here with her supply of EPI-743...I felt very hopeless today...like I might never get my Averie back, but then my faith takes over...who am I to try and predict what the outcome of all of this should be or will be? I must leave the outcome to the Lord. He will watch over her and he'll guide the doctors on this journey. I just have to do my job and have faith!

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