Sunday, September 25, 2011

The first day

Here I go with my first blog. I'm hoping this will help me to discover my strength so I am able to be there for my daughter through whatever she may have to face. Since her diagnosis in August 2011 with a mitochondrial disorder I feel so lost and everything is out of control. For nearly 2 years we thought we had been blessed with a beautiful HEALTHY little girl. Now we are living in a different reality and everyday we are having to relearn how to care for our baby. When she is laughing and giggling it's easy to forget that she's sick at all. And then she turns blue while playing and has to use her oxygen or she starts crawling while playing because her legs are too tired and we are reminded that her problems exist inside her little body which is not as healthy as we first believed.

Since this is the first blog I'll write alittle bit about her symptoms and hope that this is the only way she'll ever be affected...
Audrey suffers from extreme fatigue on a good day she'll sleep 16 hours, on a bad day she'll sleep 22. To complicate this she has hypoglycemia when she fast for more then 10 hours. We give her cornstarch twice a day to help stabilize her glucose. Usually be early evening the cornstarch has worn off and she becomes and crying, screaming mess until she eats. She has times when her arms seem to stop working, usually her right one. It just hangs there and she doesn't seem to recognize that it belongs to her. She wears oxygen while she sleeps for her hypoxia and now she wears oxygen when she plays alot. They think she doesn't increase how fast she breathes when her heart rate goes up and she has weak respiratory muscles. On her good days, she'll want to play but will quickly turn blue and need to be on oxygen. She has constipation and some mild developmental delays. She also has temperature instability and heat intolerance. She can't go outside if it's 80 or she overheats. Audrey also has dysphagia. We have to thicken all of her liquids to a honey thickness.

Aside from this people look at Audrey and say "she looks great!" Only her parents seem to notice the dark circles under her eyes and her frantic energy as she tries to stay awake. Only her parents know about the medications and oxygen and thickeners that have changed their daughter's life...

1 comment:

  1. I'm sorry for your troubles sis. I wish i could be around to help out and give everyone lots of love.=(