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!

Thursday, October 6, 2011

Waiting to go HOME!

Averie's been doing awesome. Not much change so I haven't been updating as often. We've spent the last few weeks trying to recover from mrsa and learning to care for her trach and gtube. Averie's phenobarb level got as high as 84 , with no significant reduction in her seizures. So we have been letting it drift back down. Our goal is to find the best seizure control with the most consciousness. We haven't made it there yet....but seizures are the best controlled since this all started. Most frustrating is that the seizures are primarily in her face. How come they moved? Your guess is as good as mine. Her feet barely move now and her hands are very relaxed most of the time. I can't honestly say if its the phenobarb or the EPI ...my gut says its the EPI. I am learning to have great amounts of patience these days...oh, except with shitty doctors!!
Couple days ago one of the neuros wanted to lower Averie's phenobarb even more...she also wanted to skip a dose so we could get Averie's level to 60. I said I preferred to lets it drop more slowly.. Drift down so its easier on Averie's body. Since I didn't agree the neurologist got pissed and was acting like a child. Stomped off and everything when my mom explained my preferred method (I was out sick)...lol...needless to say she'll not be working with Averie any longer!!!  Its pretty amazing how childish grown adults can be!

So now we are just waiting for a nurse to be hired so we can take Averie home! I'm very confident in my ability to care for her, but I do need relief at night. I really feel if we get Averie home she will recover much faster. I can't wait! We have a hospital bed ready and have a cool fuschia colored wheelchair ordered for her ;) I'm soooooooo looking forward to routine...and family time...cooking real meals...baking bread and I'm really looking forward to my bed every night!

If you want to help, please continue to pray for Averie's seizures to stop and for a nurse to be hired!

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