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, September 30, 2010

Big Scare!

Well as some of you already know Averie had another seizure last week. It was completely out of the blue and totally unexpected. I was over in Idaho preparing for our move and Averie had stayed with my mom so she could do a review week of school. Bright and early in the morning I got a call from my sister saying Averie was in the midst of a seizure. Intially I felt completely helpless because I wasn't there, but I also knew my mom would know exactly what to do. She had immiedately called the amulance and after confermation from me she administered a rescue seizure med- a diastat of rectal Valium. It worked almost instantly and just as the paramedics arrived. Her heart rate and breathing remained good, but another dose of the valium was administered just before the parmedicas left. En route she was was given IV fluids ( pretty gross, but they drilled into her shin bone and put the fluids right into her bone marrow ) as instructed by her emergency form. She made it all the way to the hospital where she then vomited and started to seize again. The doctors chose to give her Ativan and intubate her when her CO2 levels got higher than normal. After a couple hours she was transported in to Emanuel Hospital in Portland, OR.
The doctors told us it would probably take several days for her to wake up from all the meds she was given. She had recieved enough Ativan to knock out a football player for a day. To my surprise when I got to the hospital that night she had already been extubated and was waking up! She is so incredibly strong! Although it seems the seizures are the easy part because from from the time she woke up at 12 am she ended up staying awake untill 3 pm the that day. She also seemed to have double vision and even though she wanted to be up moving around her body was like a limp noodle and wouldn't cooperate. Add in her IV and all the wires for her heart monitors she was a very cranky and agitated little girl. Every so oftern she would yell, " NURSE!! NURSE!!" fully expecting them to come running. If they did happen to come in she would say, "What are you going to do to me now?" I really couldn't help but laugh even though I was extermely exhausted myself.
The next days proved to be better, as each day she became stronger and more coordinated. She was able to walk to the bathroom with a steady hand to guide her and lots of patience. The doctors were very impressed with how well she was doing and allowed us to finish her recovery at home. They know I am confident in caring for Averie after a seizure of this size.
I am so happy she is doing well, but the big question is Why Did She Have A Seizure? She hasn't had this sort of seizure since 2008! Normally there would have been warning signs like a headache or vomiting. Neither of these happened. She was just sitting in a chair reading when she became frozen and unresponsive. This scares me more than the ones where she shows signs because it means this can happen anywhere and anytime, including school. Its definitely adds another level of worry to the whole enrolling her in school situation thats for sure! I really think this seizure happened because she needed an increase in meds , but you never know. I need to schedule a follow up EEG to really know what is going on. I pray the higher dose of meds will do their job and Averie can continue to live a "normal" life. So the process to enroll her in school starts tomorrow..and I pray that I will be strong enough to put my faith in other people to care for her for a couple hourse a day.

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!