Last night Desty was admitted to Children's Hospital in Aurora, Colorado. Wait! This calls for a very brief backtrack.
I was pretty okay until we were introduced to Mr. Dysautonomia just a few weeks ago...for a later post!
Here we sit in Room 630, starving Destiny for a Cause. She has failed on so many anti-convulsant drugs that there's only a 5% chance of any new FDA approved medication being effective in controlling her seizures.
(Now, there's a drug that's been approved for ten years in England - the only drug in the world with an indication exclusively for Dravet - but it would come at a deep out-of-pocket expense...for a later post!)
Our aim is to put this child into a state of ketosis so that her body will start burning fat for energy instead of carbs. They don't know why it reduces or eliminates many kid's seizures, but I doubt I'd understand it anyway. Watch these videos About the Ketogenic Diet and Another Great Keto Video.
So here we sit (still! ;-)) in Room 630 purposely making my daughter ill, lethargic, nauseated, waiting for her blood to become acidic, checking her pee every three hours. It is 4:00 in the afternoon and, albeit, in high spirits as my happy little girl usually is, every hour she says in whiney confusion, "When is my breakfast gonna be here, Mama?". She still thinks we're waiting for breakfast, even though we remind her every hour that she'll get four 3oz Vanilla calorie shakes today, a bit more tomorrow and a real breakfast the day after tomorrow.
The funny thing is that today I bet Desty is the healthiest kid in this hospital - seizure-free thus far and she's still burning carbs! ;-).
My son, on the other hand, has had a fever for a third day now, is pukey and generally miserable except that his "hospital" is a kid wonderland and he has a mom and her three adoring teen daughters and their dog nursing him back to health!
Trying to get one kid to STOP puking and feel good, while MAKING the other sick...Great Times, I tell 'ya!
So many wonderful people in our lives!!!
This is the first post I've ever tried to publish from my IPad - YAY! I plan to post lots, minus cool pics and videos, this week to keep folks updated.
- Posted using BlogPress from my iPad