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 25, 2011

Ok...so here's the deal. REDUCING lamictal back to 300am/200pm and INCREASING pheno back to 64.8 pm. I talk to Pam in Seattle...she says we should've been giving diastat when Averie has those seizure clusters lasting 15-20 mins(other neuro didn't seem to think those required it). Also she was very unhappy about the wean schedule of pheno...they would've done a little at night and a little in the am...like we did dilantin. Ugh!! Anyways...getting labs drawn at 5:30 today. If it doesn't go well then we will head to Seattle and do it there.

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