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, November 14, 2011

In memory of...

We invite you to participate in the celebration of Averie's life by joining us in a balloon release at 12 noon pst on Friday. We will be meeting on the Long Bridge in Sandpoint for those who are able to join us. For everyone else I ask you to release a balloon from wherever you are around the world. I couldn't think of a better way to invite everyone who have followed Averie's journey to be a part of her memorial.

Pictures of your balloon release are welcome <3

Thank you all!
-Amber & Justin

Friday, November 4, 2011

Positive Progress!

Up early to relieve night nurse again.

Averie is wide awake so we are watching Tangled :) I'm getting some really good eye contact and when I rub her nose she closes her eyes in comfort! As those who are close to Averie know, you can put her to sleep by slowly rubbing the bridge of her nose. Its so good to see a "normal" response to something I've been doing for years! Even now she is relaxing since I put on Tangled...I really think it is something familiar that she recognizes thru her phenobarb fog. Just like yesterday when she total relaxed to my morning talk radio :)! All this tells me that we are closer and closer to getting our Averie back!

We lowered phenobarb a week and a half ago and the lower dose hasn't seemed to cause any new problems. In fact the only part of her still moving continuously is her left shoulder and her mouth...odd, but both the last things to START  moving.  Her mouth is actually moving significantly less since I took all the air out of her cuffed trach. I've been saying I felt like her mouth movement is more of an agitation than seizure activity...my hypothesis may prove correct as its improving as she can move more air thru her mouth and nose. In fact every so often little sounds squeeze out. So wonderful! Not her talking or anything, but air passing thru her vocal cords. We will be ordering a new uncuffed trach so she has more room for air to pass. I pray for the day we can remove it completely....I hate trach changes! Ugh!
She also appears to be swallowing or trying to at least. Sometimes she coughs up really foamy gunk from her trach...it looks like the bubbles she forms on her lips. We do a lot of therapy to encourage swallowing and I talk to her a lot about remembering to swallow. In fact I need to get some lotions with different yummy scents that remind her of food...sorta forgot about that till now! As she's more awake I spend a lot less time wiping the drool from her lips. I hoping she will stop thrusting her tongue against her teeth...poor tongue is so mangled from being bit so often, breaks my heart. Maybe as she wakes she'll recognize the pain of biting her tongue and instinct will kick in and she'll stop!

Speaking of noises, I have also been hearing tummy growls! Ok, this may be a "so what?" moment for you, but I haven't heard tummy or bowel sounds for weeks. As if everything was moving with only the help of gravity. Tummy sounds are good! It means things aren't so asleep anymore! I have been doing bolus feeds during the day- her recommended MLS/hr + the same of regular water. I love giving her free water...makes men feel like I'm helping flush out all the bad stuff from her little body! Goodbye bad toxins!

Her is a pic of Ave on Halloween(this was a hard day for mamma...I really was feeling poopy that we didn't get to go trick or treating....especially since this time last year she was walking up and down the streets of Kalama collecting candy like a regular kid.)