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, April 21, 2010

Wow! I can't believe that I spent a whole week celebrating Averie's birthday! Some people don't make birthdays a big deal, but I look at each as a HUGE milestone! I want her birthday to be something special to her...and selfishly special for me too! I love my little girl so much and watching her grow and stay healthy is amazing! 2 years ago I might not have believed she would still be here today. I guess that is a lesson for us all.
We packed a ton of fun into the week...birthday dinner at Five Guys selected by Papa Chuck because he was celebrating his birthday as well! Bowling on Saturday with aunts, friends, cousins and even Grandma Markee! Afterwards we came back home for dinner, gifts and cake! She got tons of clothes, a beauty salon from Auntie E and the most amazing pencil sharpener from Crazee Grandma! Also books coming from Ashlyn and a brand new "whompoot" (aka swimsuit ) from Aunt Marissa! Averie is very lucky to be loved so much by so many people! Then after gift opening it was (by special request ) " a cake with a horse on it!" courtesy of Papa Chuck!
If I got to wish a birthday wish......it would be that I get to do this many many many more times!

Wednesday, April 14, 2010

STAY TUNED!

Highlights from Averie's 6th Birthday soon to follow! We made it to her sixth birthday happy and strong...TAKE THAT ALPERS!!!!

Tuesday, April 6, 2010

Easter



It was such a fun weekend! Easter baskets, lots of food, a visit from Grandma Neva and a awesome church service!! Everything went smooth...not a single seizure! Yay! Averie got to take her first communion...not probably in the traditional sense, but she wanted to participate so we let her!

videoAverie LOVES the church music! She never goes back with the other kids because she wants to sing! Then when sermon starts she sits quietly! I am so proud of my little munchkin!

Thursday, April 1, 2010

...all's well...

WoW! I haven't posted anything in a long time! I took my first long vacation without Averie and had a ton of fun and was able to relax a bit, but I sure missed my sweet little girl!!! I'm not sure how much she missed me though...every time I would call she would pass the phone off to one of her cousins or was too busy playing to give me much more than a "I love you". I guess she is growing up and doesn't need me as much as I want her too! LOL!
As for Averie's medical status...there hasn't been much going on...and in many ways that is a super good thing!!! It means things have been uneventful...almost like we have a "normal" kid! ha ha! Averie saw her neurologist on Monday and the doctor had nothing bad to say! Her EEG came back with no change..still technically abnormal, but not worse. The doctor also liked that Averie wasn't having noticeable tremors in her hand. We had only increased her medicine a little and it has had HUGE results. We definitely think the only reason it needed increased at all was because she was going through a growth spurt! Sure enough she has gained 4lbs! All of a sudden I am buying 7/8 size clothes and all her pants are short! Good thing its almost summer and she can start wearing capris! This means her body is working correctly! I am just so happy! We don't have to go back to the neurologist for 6 months! I continue to pray for little miracles like these!