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!

Friday, September 17, 2010

Big Changes!

Averie's life is about to change big time!

We are getting ready for our final week living with my parents and preparing to move into our own apartment! Averie is super excited and has already picked out her new room. I can't wait not to share a room with her and she excited to get out all her toys that have been packed for the last year.

Its a big change to a totally new area. Its a small community surrounded by very good hospitals and schools. I wanted to make sure that all her medical needs would still be met. In this case we will be near Sacred Heart Hospital in Spokane which has the leading neurology department in the region. We will also be remaining in close contact with Averie's mito specialist at Seattle Children's.

Another huge change and a big milestone for Averie is that she will be starting school! First grade...I can't believe it! She is getting so big! School for her has already not gone as planned...as in...she hasn't started and will be 3 weeks behind due to unforeseen court matters. I'm disappointed it got a bit jumbled up, but in the end I know this will not set her back. I am going to be working closely with the school and will make sure there is an IEP in place to make sure her medical needs are accommodated. More than likely this means she will start out school at half days and will work up to a full day. My guess is this won't take long unless she physically can't handle such long days. I hope to have this all ready to go next week! I really want her to get to experience "normal" first grade life! Right now she is socially a bit behind. She doesn't understand fully how to play with other kids her age...like the other day when her and some friends were playing and she came running up to me saying ," Mommy! Libby hit me on the head and called me a duck...why did she do that? why did she walk in a circle hitting our heads saying duck, duck, duck?" I said," Averie, its a game called Duck, Duck, Goose." She said," well, I got up and ran away so she couldn't get me." Lol...it was so funny and at the same time I felt terrible that she didn't understand the game. I want her to know these things and I KNOW she is capable of learning. I am scared to let her go off and be in the school's care, but I know it will be a good learning experience for both of us!

As soon as she starts school and we get moved, I'll update everyone! Wish us luck, because the next couple weeks should be very very interesting!

No comments: