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!

Thursday, February 18, 2010


So different from our past EEGs! Normally we have to pin her down to get all the wires on her head. She normally screams and cries and becomes hysterical. This time we did a sedation EEG, which uses a drug that relaxes her, but doesn't completely shut her down. Basically had to hold her down for a few seconds and then she was out like a log! It was so stress free I almost didn't know what to do with myself! Actually had time to enjoy a cup of coffee with my mom! They were able to get a good reading and we should have the results soon. Pretty painless! She was adorable as she woke up..I suggested McDs for lunch and all she could mutter was "french toast sticks"! ha ha! that's my girl!

Tuesday, February 16, 2010

..whats up with all these seizures!

Wow! What a roller coaster these last couple days have been! Three days in a row Averie has had increased breakthrough seizure activity. Yesterday she had at least two drop seizures ( or Atonic Seizures: Atonic means "without tone", so in a atonic seizure the muscles suddenly lose strength. The eyelids may droop, head can nod, the person can drop things or fall to the ground, but usually remains conscience.) She also had what we call "shakes" an exaggerated shiver type seizure where she has more control, but she can't use her eyes and it her head jerks slightly. This morning she had another drop seizure and a couple of shakes as well. Luckily we have a great team down at Emmanuel so we were able to get an appointment for an EEG scheduled and have already increased her Lamictal dose. In a couple of days we should see what this dose increase does. Until then we will just have to keep her from being her crazy hyper self ...take it easy...watch lots of movies and get lots of sleep. I am confident we can solve this little problem. Right now she is sleeping away...hopefully she wakes up in a good mood!

Saturday, February 13, 2010

...sleep please!

...up at 3am...and never really went back to sleep...ugh...so much for a fun slumber party. I guess routine means a lot to her. Changing it seems to have major effects on her sleep cycles. Thank goodness I was able to send her home to take an early nap.

Friday, February 12, 2010

Bowling League!

Last Friday we went bowling for Averie's best friend Ashlyn's birthday! Averie was unsure of the whole thing for awhile. I had to let her discover it could be fun all on her own without forcing her. I got her shoes on, but she cried and cried that she didn't like the shoes as we looked for a ball. Finally I sat her on the bench, took off the shoes and told her she didn't have to bowl she could just watch. She sat on that bench and watched the birthday girl bowl for several frames, then all of a sudden! "Mommy..I want to try".

Back on went the shoes and she proceeded to bowl the rest of the game, side by side with her best friend. It was so cute watching them "bowl" . They would sit and watch the ball as it slowly made its way down the lane. Ha ha! As it reached the pins they would jump up and down and run back to see their score.

They totally worked as a team, each taking turns and amazingly not a single argument arose! It is so great that Averie has a friend to help her carry the ball when it gets too
heavy, who explains the game and is willing to wait for Averie to catch up! We love you Ashlyn!

Saturday, February 6, 2010

Another child lost to Alpers

Say a little prayer for the family of Freddie Read. He lost his battle with Alpers today...he is joining his older brother, my son and many other mito angels in heaven. His mother is a pillar in our mito community and inspires so many with her story and her courage! My heart goes out to her and a big virtual hug as well! Freddie will be missed by so many, even though many of us have never even met him! I will miss those beautiful eyelashes for sure!


Tuesday, February 2, 2010

I seem to meet a new family who facing the challenges of Alpers each week. My heart goes out to them and I want to be there for them! We didn't have anyone when our son got sick almost 5 years ago...but now, there is this little community forming that is getting louder and stronger every day! I remember what it was like before Averie's diagnoses, we didn't understand what had happened to our son. We didn't understand Alpers. The name Alpers had been thrown out there as an underlying cause for why Lane was sick, but all we understood was the devistation that it caused. At the time we were told it only affected children under the age of three, so when Averie turned 4, we naively thought"Thank God! Averie won't be sick!" Then June 11th 2008, she began to complain of a headache so I had her take a nap with the expectation that sleep would cure it. She woke up; throwing up and we realized she couldn't see us. She was really scared....we were really confused and then we saw the seizure activity in her eyes. It was deja vous! It was like looking at Lane's eyes. Immediately we got her to the doctor and thankfully they got her seizure stopped because we were able to alert the medical team to our family history. She needed to be intubated due to high CO2 levels and they began a series of tests to find the cause. The doctors poured over Lane's medical history and were able to rule out many things right away. It took four more PICU stays, a muscle biospy, and countless blood tests before we confirmed the Alpers diagnoses. I remember the call clearly as Dr. Metrick, Averie's neurologist, told me that Averie suffered from Alpers and they had confirmed it to be the cause of death for Lane. I remember sinking to the floor and crying as I thought about the years of unknowing that surrounded Lane's death. That chapter had finally closed, yet I kept thinking...we have to do this again? What does this mean...she is different from her brother. We won't let her take the nasty Valproic Acid that became a toxin in her brother's body! Her doctors know more than they did 3 years ago, and she seems so much stronger than Lane did!
And so far, the meds HAVE been working. No major seizures since Sept. 08. She has days like today, when she is fighting a cold, that she is extra shaky...has dark circles under her eyes, but she is still here...still fighting...still somehow not progressing as they told us to expect. She is my little She-Ra! My little Wonder Woman! I pray everyday that there is something in her that will be the answer another family is praying for. I don't know, but I sense a bigger purpose here.