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!

Sunday, August 14, 2011

A slight twitch...

Last night right before I left Averie I touched her hand and her pinky started twitching. Its hard to describe, but not much different then when you get an eye twitch. I pointed it out to her dad so he could tell the dr during rounds. As of this morning her finger and elbow have twitchy movements, but there is no seizure activity on the EEG. They think it might be withdrawals from the pentobarb since her oxygen levels have been in the high 80s/low 90s after keeping steady around the 100s. The pentobarb is now completely turned off and we have to wait for it to come out of her system before we'll really know if its seizure activity or not. They say it could take several days for her to wake up. So now we wait.....

So glad my mom is coming tomorrow!

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