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!

Saturday, August 27, 2011

....no intubation needed!

I totally forgot to update so I apologize! The other night left me in a grumpy mood, but we had another CARE conference and were able to get everyone on the same page! I stressed that I needed them to treat Averie like she can be cured...I totally feel that some doctors see her diagnosis and have already written her off. I'm not going to allow that attitude around her. All and all I think they get it or are pretending too :)

We have Averie on bipap most of the time, with "sprints" of high flow 3 times a day. She is doing awesome, making great communication with her eyes and even mustered up a sctratchy "not yet" as we were trying to suction her between coughs! The nurse and I started laughing as we confirmed what we thought we had both heard!

Now mom and I have a tough call to make...leave Averie a day early(w/ her dad) and head for home...in hopes we'll get there just after she does. Or wait for her to leave and end up having to wait for us on the back end. Not easy either way....only cause I won't see her for at least 48 hours!!!!!

1 comment:

Lacey said...

I just found your blog and it gave me chills. My son did the pentobarb coma for seizures 3 years ago. It nearly killed him. He was maxed out on vent settings, and he puffed up so bad he was getting pressure sores. The status seemed to stop, but right now his EEG is considered not convulsive status. I pray that she continues to improve and can get home soon!