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!

Tuesday, August 9, 2011

....everythings different....again.

....sheesh...not what I expected this morning...Averie is not having the myoclonic siezures that's she's been having, BUT is having a normal tonic clinic siezure :( Her IV pulled out last night and she went from 1 ml of Versed/hr to nothing sending her into withdrawal. They were able to get the IV back in and started the Versed back at .05ml/hr. When I got here this morning she had just been given 50mg of Phenobarb. Hoping it kicks in soon. Her vitals are all good...oxygen too, but still no fun to watch her seize...I do feel like I know how to stop these tho. I prayed hard the myoclonic seizures would stop...I should have been more specific I guess. Love my baby so much and just want her back! Word on the street is doc is in talks with Stanford...let's hope so!!!

1 comment:

Terrie said...

Hugs to you for the day and the struggles. Praying for Averie.