Saturday, September 30, 2006


I hate CF. It really sucks.

I am blessed that Kai has been pretty healthy.

The new thing is trying to pump up the calories while still finding balance between his enzymes. He's on Ultrase EC and he is allowed to have up to 25 capsules in 1 day. Well, when you feed him higher fat content foods, if you don't up the enzymes it just goes right thru him. Meaning that the fat just comes out in his bms. This is bad for Kai because first of all he needs those calories...and second the horrible horrible diaper rash.

We are talking bright red and very very painful. We have tried every single butt paste under the sun. I have even resorted to making my own concoction which is 1 tube of A&D, 1 tube of regular original Desitin, and 40cc of Maalox. I got this recipe from a woman on the Cystic-L listserv.

I have also used Triple Paste. Which isn't cheap!

It's very heartbreaking to hear Kai screaming during a diaper change...and he walks like John Wayne afterwards...John Wayne after riding a horse for too long.

So, we are plagued at this moment with yet another rash...not sure if it's from the malabsorption or from the increase in enzymes...or is it just the new diet!?

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