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!

Wednesday, January 19, 2011

Time to update...

It has been a LONG few months. That is really no excuse for not keeping this updated, but honestly most of my spare moments I have been spending sleeping.

Averie has been in and out of the hospital since she started having seizures in Sept. 2010. This has been a very frustrating process because we just can't seem to get ahead of the seizures. Not to mention that they keep changing...one week it will be drop seizures and then the next week it was little absence seizures. Seems like at least once every couple weeks( or more often ) we end up in the ER trying to stop a big seizure. We are fortunate that our neurologist helped us make a Seizure Protocol Plan to hand over to the ER doctors so that Averie can be treated effectively and efficiently. Unfortunately it seems that every so often we get that one doctor who wants to start all over with her and refuses to follow protocol and we end up with a way longer hospital stay and unnecessary trips in the life flight helicopter. Our only break has been from Dec 21st - Jan 9th where she had no outward seizure activity. Since the 9th it has all started back up agian.

Averie has been a little trooper through this whole ordeal and has maintained her spunky stubborn attitude :) It seems like I'm the one who is struggling day to day. I KNOW the problem is that I haven't been sleeping. I get up at least three times during the night to check on Averie and make sure she doesn't have any night time seizures. Its exhausting...it doesn't help that I am within a month of having the new baby! It frightens me a bit as to what life will be like with a newborn around and Averie a constant concern. I pray for strength every day so that I can get through each day. I am so thankful for the huge amounts of support I get from Justin, as he is always willing to step in when I need a break. His family has been a blessing too, making me feel very safe and loved. I know they all will be there when I need them.

On Monday, Averie will meet with Dr. Saneto at Seattle Children's Hospital for her yearly checkup. I am hoping we will get some better insight as to what needs to happen to keep Averie as healthy as possible. Unfortunately I don't get to take Averie to this appointment since I can't be traveling right now. My parents are taking Averie for me which should work out well since they are both very well aware of Averie's situation and can talk with the doctor no problem. I'm hoping to be conference called in on the appointment so I can hear first hand what is being discussed and so I can ask questions as they come to me. In case I can't be called in on the appointment, I'm going to try and put together a notebook of questions that my mom can ask for me. I am so so so so thankful that my parents are able and willing to be able to help me out! I love them!

Well...now I am off to get some housework done while I wait for neurology to call and I need to check on Averie( she is happily cuddled in bed watching a movie ). Sorry this update was so general...I promise to give a full update after her appointment on Monday!

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