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!

Tuesday, October 26, 2010

Another seizure...

STUPID ALPERS!!! I wish I could beat it up!

On Monday at 3:00 am I woke up to Averie having a seizure. She was sleeping with me in bed and it sounded like she was really congested or something. In my sleepy daze I tried to get her to cough up the gunk, but then I felt by her mouth and all I got was handful of wet stuff. I thought "bloody nose!" and turned on the light...that's when it was very clear that it wasn't blood, but saliva bubbling out of her mouth. I tried waking her with no response. I jumped up and yelled for my mom to call 911 because it was clear Averie was having a seizure ( it took a minute to get them to realize what was going on and I almost broke the phone trying to get it to dial...i was shaking SOOOO badly! ). I immediately got the rescue diastat and while my mom was on with  the dispatcher I gave Averie her first dose. Dad helped me get her downstairs to the couch where we watched her carefully. The seizure was tapering of ever so slightly so I gave her the 2nd dose of diastat. Almost instantly her body relaxed and she appeared to just be sleeping. Minutes later the EMTs were there and taking vitals. They said everything looked alright, but I warned them that most likely she would start to seize again. The decision was made to take her straight to Emanuel Hospital. I rode in the ambulance with her and at one point the EMT asked me to describe what seizure activity looks like. It ended up that she may have had a little seizure in the ambulance, but apparently it stopped on its own. He had me move to the back to sit by her so that I could point out any other seizure activity, but the whole rest of the trip she remained seizure free. When we got to the ER they got an IV going and gave her some meds to keep her tummy calm. She still hadn't had another seizure so after about an hour in ER we were moved up the pediatric unit. Averie slept most of the morning and only woke for little drinks now and then. Finally in the early afternoon she woke up more fully and proceeded to eat a chocolate chip cookie, a whole dish of mac n' cheese and drank a ton of chocolate milk. After talking with the neurologist and watching her closely they said that we would be able to go home! It was the general consensus that her daily meds needed to be increased , but that she was almost near where she needed to be since she only had the one seizure and  that it was easily stopped with the diastat. This is very similar to 2008 after she was first diagnosed, when it took several medicine adjustments to get her seizures under control.

Hopefully with these adjustments we can look forward to another year or two without seizures. Most likely we will be having to make adjustments all along the way as she continues to grow taller and gain weight. I will happily deal with this if we can keep her at her baseline. I just really hope she will not have any more seizures during the night. I am seriously considering setting up a video monitor in her room to watch for activity. If I don't do something I might never sleep well again!