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!

Wednesday, July 20, 2011

Night watch...

I feel like a guard on duty. Sitting in the recliner on seizure patrol. Averie spent today having seizures again. I think the culprit is a flu bug, but I can't be sure. She woke up from her nap throwing up... my mom and sister had to handle the incident because it was during one of the rare times I stepped out of the house without either of my kiddos. Averie seemed to get better as the evening went on, but right before bed she had a significantly longer seizure. I was starting to think she wasn't going to come out of it, but she finally did and fell asleep on the couch...her current resting spot. Since then she's had two seizure clusters in her sleep. I'm very nervous because these are breaking through even with her night dose of phenobarb. I decided I'll just camp out in the recliner so I wont ever truly fall asleep...worst thing in the world is waking up to a seizure that isnt stopping... Just saying prayers that we make it over this little hump in the road....

Did I mention I have a cuddle bug in the chair with me?...baby sister is teething and refuses to sleep unless she's being held...she is helping to keep this guard on her toes tonight!

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