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, May 24, 2010

Vacation!

I cannot wait till morning! Averie and I are loading up and taking a road trip to Sandpoint, ID for some much needed R&R! I am extra excited about this trip because Averie is going to get to ride a horse for the first time! I have a pretty good feeling she is going to love it. She has a small obsession with horses...hence her horse birthday cake and her Build-a-Bear Pony named Boy...lol..she has been wanting to ride since last fall and we just haven't had a chance till now. I am interested to find out if they have a positive effect on her? I need to do some research, but I know there are many places that offer riding as a type of therapy for children with different disabilities. I've decided that we are going to take our time on this drive...stop and smell the roses so to speak....because sometimes I think we rush to get through life and I want to stop doing that. I want to enjoy every minute I have with my little girl!! :)

Oh! I almost forgot! Averie had a dentist appointment on Wednesday and I'm sad to say, her teeth are as bad as mine were! Lol! She has to have 4 pulled out to make room for the two that are coming in BEHIND them. She also needs sealants on her permanent molars and a good old fashioned cleaning! I was very proud of her for at least allowing the dentist to look in her mouth. He couldn't get much closer so all of her dental work will be done while she is sedated. I have to coordinate with all her docs to make sure she can go under anesthesia at the dental office. More than likely though, she will have all the work done at Emmanuel Hospital in Portland, OR. I will feel much safer knowing her doctors are close and they have everything they need in case of emergency. I am hoping all this work can be postponed till AFTER my cousins wedding...but if not, Averie is going to be adorable missing all her front teeth ( one on top is days away from coming out!) I also think the tooth fairy better be thinking of an extra special reward, cause there are going to be lots of teeth under Miss Averie's pillow!!

Thursday, May 6, 2010

Mother's Day approaching!

I am a basket of mixed emotions around Mother's Day. It is such a wonderful time of year to celebrate the moms in our lives! To show them how much they mean to us! I think its also a time to really think about the many blessing we receive as moms. I have really been LOOKING at Averie a lot lately...trying to burn the image of her at age 6 into my head. She is so beautiful, happy, strong and funny! Just this morning she asked if I was feeling better ( I'm on day two of a terrible head cold ) and when I told her "not really", she says to me..."mom, I'm sorry I gave you my sickness". So cute and funny! Also a reminder that her actual sickness is something I wish I could take from her!!! I want to give her all she needs to live a long healthy life, yet I know I am only capable of so much. Its so frustrating, but for all that I am still very thankful that she is HERE! I miss her brother terribly and I can't even explain the pain that wells up in me on holidays like these. I want to say that he should be here now, but my faith tells me he is in a place far better than this. My heart goes out to ALL the mom's who are missing their babies as much as I am. I hope that they can find the joy and peace in the next few days.