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!















Sunday, August 21, 2011

Rough morning...

So they tried to extubate Averie this morning. She was over breathing the vent by significant amounts. Unfortunately the process didn't go as planned. Averie would not breathe on her own and they were forced to reintubate...now the machine is doing most of the work again. Hoping today she levels out and we can try in a day or two. She is also much more shakey today..again we need to be patient as the pento levels come down and the pheno levels go up.  I'm missing my girl so much....be patient is HARD!!!

2 comments:

GIA GEE (y) said...

HEY AMBER,
HOW R U? HOW IS BEAUTIFUL PRINCESS U DID'NT UPDATE DEAR I M WORRIED ABOUT AVERIE....
WELL I M ALSO AMBER MOTHER OF FIVE BUT HAD TWO LITTLE BABIES WD ALPER'S... MA FIRST DAUGHTER HAS PASSED AWAY BEFORE 8 YEARS N RECENTLY MA LAST SWEETIE LEFT ME FOR HEAVEN ON JULY 15:(
BUT I DON'T WANT TO DEMOTIVATE U COZ MIRACLES ARE THERE OUR PRAYERS ARE WITH AVERIE...
I REVIEW UR BLOGS REGULARLY TO KNOW UPDATE COZ I KNOW HOW IMPORTANT TO LOOK OVER VITALS I M A LITTLE WORRIED ABOUT HER COMA, ALL MEMORIES RECALLED...
WELL SWEETHEART TAKE EXTRA CARES OF U N UR FAMILY N PRAYERS WILL BE CONTINUE..
LUV N CARES TO AVERIE N U AS WELL!

GIA GEE (y) said...

Hey pls gv ma luv to ur sweet princess...
wanna ask u some questions about if u'd like to reply me not now but later on when Averie recovers.. Actually I want to study more about Alper's experienced n want to make people aware of this horrible mito...
Luv n cares.
Amber