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, July 24, 2011

Always on day 2...

Each time I reduce Averie's phenobarb its a total ordeal....the 2nd day always seems to be the hardest....today has been no different.
Getting Averie to take her meds hasn't been easy lately. It has been taking at least two trys to get them all down. The first attempt has resulted in vomiting and then attempt two seems to be no problem. Tonights meds took three trys...my oh my...talk about aggravating!
Averie spent most of the day in a state of loopynesss...no different than trying to get off any drug I suppose. She laid on the chaise lounge chair on the patio for a good long portion of the day. Barely talking, crying out in various states of confusion, not eating or drinking and in general not participating in the world around her. By 7pm I was getting some smiles out of her and she was being a bit more interactive, but still not herself.
I hope for a better day tomorrow ...I don't think I would have made it thru today without my mom, grandma and sisters. It was a team effort today that's for sure! I pray tomorrow she starts on the road to recovery...thank goodness we only have to do this every two weeks!

...oh...and on top of everything she gave herself a black eye in the bathub yesterday....lol..we've been teasing her that it looks like she got into my makeup :) she usually smiles at that!

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