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!

Thursday, August 11, 2011

Hesitation ...

I'm watching my big girl lay here peacefully for more than 2 hours...the longest moment of rest I've seen in 15 days. The pentabarb seems to be doing its job so far. Her EEG has calmed down tons and she is holding steady with her blood pressure. I hesitate to call this successful just yet, but know many of you are anxious for updates. Your prayers are working. Keep it up please! If this keeps her calm for 24-48hrs then we'll have to bring her out of it...we need prayers that this "rest" will reboot her and the seizures won't start again.

No comments: