Poop

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!?

KinderCal

Well, looks like insurance doesn't want to cover this special formula for Kai. I decided to not wait until the Dr's battle with the insurance company and just get it filled and pay for it out-of-pocket.

I guess this is considered formula so I can definitely see why they won't. They never paid for the other formula! Breast milk was free...sort of. Free from external monetary costs...but it did have costs in time and effort on my part. I don't expect a pat on the back. I did what I needed to do for Kai.

The KinderCal is 49 dollars per case of 24 - 8 oz cans. So, considering he drinks about 5 bottles a day, it should last at least a few days. I hope he likes it. Pray he does.

Clinic Visit

Kai had a clinic visit on Tuesday 9/26. We saw Dr. Pian and all the wonderful staff at the clinic. They are always so helpful and very informative about anything that I have questions or concerns about.

Kai hadn't gained weight this month. This is a big concern since he was doing so well. We tried the half whole milk and half half & half. We have been doing everything we can, but still no weight gain.

It would be easier if the little guy would eat food. He doesn't want to eat regular food. He gags and has what I believe is an oral aversion. He's never been one to put things in his mouth. So, it has never concerned me about the food until now. Calories are easier to get in if he's eating food.

We already put oil and butter in his food.

We have an appt with OT next week. It will be first of a few I believe since we will be working on getting this little guy to eat food. I know once we get him to do that he will be well on his way.

This clinic visit, I did't write any stats down. I was so focused on the weight that I didn't get what his length was. His wt. was 11.245 kg. His length???? I don't know.

Say a prayer for Kai. He needs to be getting chunky like mom.

We did get a new mask for his neb treatments. It's the bubbles mask. It looks like a little fish. It's cute. I asked about the length of time for the TOBI treatments. I told the RT that it takes up to 27 minutes to do. He said it's ok and it's supposed to. Any longer than 30 though just stop. I am not complaining by any means...I actually enjoy that time with Kai. We sit watching Sesame Street or Jack's Big Music Show. He sees me with the neb cup and mask and he just climbs in my lap. It's pretty cool.

We are off TOBI for the month. We start again in 3 weeks.

I will post again when I have more information and I will let you know how the OT appt goes.

Hugs,
M