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, October 23, 2011

No nurses = no sleep

I'm a little, actually more like a LOT amazed that my sweet girl can be so demanding even tho she doesn't do anything. *sigh* From 6am to 12am its something every couple hours...meds, breathing treatment, changing food bags, wiping drool, diaper duty(thankfully she holds it like she normally does...makes much less trouble for me) and physical therapy.

Right now I'm sitting here waiting for her breathing treatment to be done. The last for the day. She loves it...I think. I am feeling very frustrated that she's not more awake these days....I miss being able to discuss important things with her, like what to name the new kitty we have coming from my aunt. I have a pretty good feeling that the names I think she'll like are not what she would actually pick. She's much more creative than me....like when she named her stuffed horse Rango before we ever even heard of the movie. I have been getting some very wide open eyes in response to questions, but she's still very much out of it. Kinda surprising since she's on a lower dose of phenobarb than she came home on in March. I'm anticipating that we'll lower it after Mondays labs come back. Her twitching has seemed to lessen by miniscule amounts each day. Its most prominent in her shoulders and face. I really feel the face is due to her not knowing how to dispose of her spit because of the trach. She's constantly moving spit out of her mouth and I think if we can get the trach out the twitching will slowly cease...sorta like a nervous habit. Thats my hope at least. Unfortunately the trach isnt going anywhere until she's more alert. So I'm all for lowering her phenobarb. We've been on the same dose for two weeks and I don't think her seizures are any worse than before we lowered it last....I'd say better even :)

She's been looking really good lately. So pretty! We have fun doing her hair and she gets weekly mani/pedis from Aunt Carolyn. Tonight I was even able to get her to open her mouth a little wider and gave her teeth the best brushing she's had in weeks. A win for mommy!
We also have a great day nurse who picks up where I leave off...with massages, book reading and lots of chatting. I really wish I could clone the nurse...especially on these long weekends when we are on 24hr duty. Oh well.... Only one more day and then I get to sleep in my bed again for the whole week!

Please pray Averie starts to wake up more and her twitching continues to improve. :)

1 comment:

Eyes that watch, ears that hear, a heart that feels said...

I am trying to keep as updated on here. I am always praying for you guys. She is so strong. She gets that from her mom!