Wednesday, June 22, 2011

We Have Ketones

Forced, weary smile.

First, check out this video from Monday, when she was probably the healthiest child in this hospital with 298 beds.
Ketones are flowing in Princess Destiny's body now; glucose is averaging sixty. Monday night and yesterday morning were very literally filled with petite-mal clusters, and barf. Can you say Raggedy Ann?? Yesterday evening was much better, but a horrible night followed.

Here are a few video clips of Destiny today:



Yesterday we prepared Desty's meals for today.
BREAKFAST: 25g strawberries, 8g egg, 46g
cream, 9g bacon, and 12g butter
LUNCH: 47g cream, 18g cooked carrots, 12g skinless chicken breast, and 18g butter
SNACK: 46g cream, 6g purple grape, 36g beef frank Oscar Myer, and 6g buttery
DINNER: 46g cream, 36g cooked broccoli, 4g processed American Cheese, 8g lean ground beef, and 15g butter


Just one gram + or - is not okay. She is on a 4 fat to 1 carb ratio, gets 1350 calories/day, 20g protein/day and 43 oz of calorie-free fluid/day.

I will test her urine 2Xs a day to chart ketones, and once a week I will check her urine for blood and protein.

Obviously this "Blubber Diet" is not nutrition complete, so pill supplements are imperative - of course, supplements, medications, lip balm, toothpaste, sunscreen, ointments, shampoos, etc., must be 100% carb free!

I could be overwhelmed....LOL...I could be sad and scared and have any number of feelings. Oh who's kidding?! I AM ;-)

HOWEVER, my Love for this child of mine tramps my Trepidation, and if this is a mountain I have to move for this child to have healthier brain functioning and a fuller life, please bring it on, BRING IT ON!



(Please forgive the messy format? IPad and YouTube still have bugs to perfect for blogging.)

4 comments:

Marsha said...

I know it's seems overwhelming now, but knowing how quickly you learn things, I have no doubt you will soon master it! It will likely become second nature, as it has for other parents. Good thing you have a mind like a steel trap, : )
Hi to Desty, and tell her "Way to go!"
As she grows, I know you will teach her to keep track herself as well, so she can be more in control of her own health....the same way you have been teaching both her and Benny so many wonderful things. : )

Robin and Bruce said...

Your family is surrounded by so many people who love you - you are not on the journey alone. We are here with you - always.

Julie Aird said...

Nice to see Desty playing and hopping around! She is dear to our hearts. We are here for you too! Give Desty a BIG HUG for us! Love, Julie and Lowell

Mari said...

I'm looking into the carb content of our products. I think we're safe for Desty -- but want to be sure.

Arms around you ALL!!