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!

Friday, September 2, 2011

...back one our home turf!

So ...we are back in Spokane. Averie is actually doing pretty well. I think we are finally getting on top off the myoclonus seizures...only see movement in her toes and hands. Yay!!!  For some reason we are seeing seizures in her mouth area. She's responding to boluses off Kepra so that might need to be increased.

Another thing on the to do list is a gtube. Everyone agrees she likely won't go home with out one. I am TOTALLY open to this...if only just to make sure she ALWAYS gets her EPI medication. Surgery consult some time today ...I'll keep you posted.

Also slowly spending more time on high flow (5+ hrs) and less time one bipap! So proud of my girl!

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