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!

Monday, July 18, 2011

Watching seizures...

Maybe its one of the toughest things I have to do...watching Averie have seizure activity. When I see seizures start I find myself tensing up...waiting...counting the seconds that go by as I wait for the seizure to stop. Sometimes its within seconds of starting and sometimes, like today, there are a series of them. I watch as Averie's eyelids close part way, her head freezes into place and she moves her tongue ever so slightly over her lips. Sometimes if she's mid activity- like eating- her hand will lose control or move up and down rapidly. As she comes out of the seizure she picks up right where she left off...sometimes mid sentence ...sometimes to finish getting the food to her mouth. I always ask her if she's ok and she looks at me like she doesn't understand what I mean. I feel better knowing that she doesn't put a lot of thought into her seizures. She either doesn't remember them or is so use to them its her "normal". Makes me very curious as to what goes on in that little head of hers?

Today she's had a series of these episodes and I'm on pins and needles...never knowing if they'll stop or end up requiring intervention. I hope they'll stop..we really want to go down to the river and swim.

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