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, February 16, 2010

..whats up with all these seizures!

Wow! What a roller coaster these last couple days have been! Three days in a row Averie has had increased breakthrough seizure activity. Yesterday she had at least two drop seizures ( or Atonic Seizures: Atonic means "without tone", so in a atonic seizure the muscles suddenly lose strength. The eyelids may droop, head can nod, the person can drop things or fall to the ground, but usually remains conscience.) She also had what we call "shakes" an exaggerated shiver type seizure where she has more control, but she can't use her eyes and it her head jerks slightly. This morning she had another drop seizure and a couple of shakes as well. Luckily we have a great team down at Emmanuel so we were able to get an appointment for an EEG scheduled and have already increased her Lamictal dose. In a couple of days we should see what this dose increase does. Until then we will just have to keep her from being her crazy hyper self ...take it easy...watch lots of movies and get lots of sleep. I am confident we can solve this little problem. Right now she is sleeping away...hopefully she wakes up in a good mood!

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