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!

Monday, October 17, 2011


"I know I have seriously neglected to blog, but this first week home has been a whirlwind! First off let me say I'm so thankful for all the love and support from my family over the last couple months. Especially to those who took hospital shifts...to my mothers in law and Justin's aunt who were willing to lend a hand, to my dad for for driving my mom over every week and especially my mom who was able to relieve me sometimes for a couple days in a row, who advocated for Averie on the days I couldn't be there and who has been my comic relief many times. I am so grateful they all were able to jump in and learn to care for Averie and her new needs.  With out them and all the words of encouragement and continuous prayers from all of you we might not have survived our hospital stay.  Certainly I wouldn't have survived without my husband, Justin. He has stood by me thru all of this, giving me so much support and constant optimism on the days I didn't think could do it.  I don't know how I could feel more blessed to know my little girl means so much to all of them!

Ok...enough mushyness...hard to type when I'm crying...

Like I said in the beginning, we've survived our first week at home. Last Sunday we were released after Averie's labs came back negative for growth...it meant we had no reason to wait till Monday for pic line training since we wouldn't need IV antibiotics. Our wonderful nurses decided to try and get us out and all of a sudden we were in the car on our way home. It was seriously so fast...well I guess it DID take forever to load all Averie's stuff and install her carseat, but in terms of hospital discharge it was fast. I wasn't about to say we weren't ready for fear that each second spent in the hospital was exposing Ave to more infections.

We came home to Averie's room all ready for her to be moved in. We spent the first day getting all her boxes of supplies put away. A months worth of sterile water, food bags, humidifier tubing, suction catheters, formula, trach care kits and much more. I got it beautifully organized and the next day I had to make room for more. *sigh*

It took a few days, but by the time Tuesday came we had a pretty good routine down and I was able to walk our first nurse through it and relinquish some control and rest. ( & celebrate our 1st wedding anniversary with a glass of wine from our wedding! I had been holding on to it all year! A yummy St. Chappelle Huckleberry!) We had 24hr care the rest of the week...something I'm not sure I love yet. Nights are essential of course...because on the nights I've got no nurse I don't sleep for much more than a couple hours at a time. Day nurses are ok for now...since we don't have her wheelchair yet, but I think that'll phase out a bit as Averie recovers. So far I like our nurses which is great.

Averie's first couple days home were a bit rough. She hit withdrawls from a phenobarb dose reduction on Tuesday and was very twitchy and sick looking. Later that week she had one day of throwing up and Thursday  night we ended up in the ER because her tummy had blown up like a balloon. We thought it might be a blockage, but xrays showed she's got a lazy colon. Probably from all the phenobarb and too much miralax during our hospital stay. Since pooing it up in the ER she's been doing great and being pretty regular now. She's spiked a fever a couple times, but all in all its been pretty easy to handle.

Wow reading this shows me why I feel like I was hit by a bus. Averie's keeping us on our toes around here! I'm excited to see her more awake each day as the phenobarb levels slowly drop...those big brown eyes and all those pretty eyelashes are a welcome sight! Her seizures have been improving too which is great and we get to see her relax much more often now. My favorite times are when she's falls asleep and her body becomes still. I know those times she's laying there healing!

1 comment:

Eyes that watch, ears that hear, a heart that feels said...

I am glad to hear there is progress. I keep checking in to see how things are going. You are all in my prayers.