Today CF Stands for "Cute Fatties"

Fellow CF parents whose kids have struggled with weight gain can relate to my excitement when I share the news that my kids have gained a pretty substantial amount of weight since their last clinic visit in May. Cohen has gained over 2 pounds and is now 30.3 pounds; fortunately, he has not really struggled with his weight since he started taking enzymes at 7 weeks old, but weight gain is always exciting nonetheless when it comes to CF. Emberlynn, who struggled with weight gain even after diagnosis and enzyme treatment and ended up having a g-tube placed when she was 18 months old to help with her growth, made my jaw drop today; she has gained over 4 pounds and is a whopping 38.5 pounds! I knew those 4T shorts were getting tight in that waist, but I never would have guessed she'd gain that much! I was ecstatic. My sister, who went with us this time (who I am extremely grateful to, seeing as she had to take Cohen potty 4 times while I spoke with the medical team) and I called them the little fatties.

Isn't it ironic how in today's society, what with its obese kids and health crises, I am rejoicing for my kids' weight gain? Isn't it also ironic that this chubby mommy, who so desperately is trying to shed the pounds, is also desperate for her children to do just the opposite?

So, to get back to the clinic visit update, there were a few changes made to the kids' existing treatment routines. Emberlynn will actually get to decrease her tube feedings (yay for breaks, not just for Emmylou but for Mommy and Daddy, too!). Presently, she is on her feeding tube every night, but we get to knock it down to 5 nights a week. Can we say weekend trips with no tube junk to haul with us? Hallelujah for that! Her enzyme dosage is going to increase to keep up with her increase in weight, so we are bumping it from 3 caps to 4 at meals and before and after tube feeds.

I was also told that, per CF protocol, Emberlynn has to have a CT scan on her lungs soon. It will give the doctors a better look at her lungs and allow them to see how they are looking, in a nut shell. I was also forewarned that her lungs will look abnormal no matter what because of the CF and to be prepared for that. Coincidentally, I just read an article last week about CT scans and how the high radiation exposure from them can cause cancer later in life. I brought this concern to the doctor's attention, and we discussed it further. I agreed to schedule the scan, but only after telling her that I'd need to discuss it with Matt and also further research the risks. It's ultimately our call, of course, whether we want to risk it. It's a hard decision to make, and it will take a lot of weighing the pros vs. cons and risks vs. advantages. If we decide against it, we can cancel the appointment.

As for Cohen, he is going to be starting Pulmozyme, which is an inhaled medication with which we are quite familiar (Emberlynn has been on it since she was 22 months old). He will take it as a breathing treatment once a day. I'm a little worried that he will be upset by it for a while; after all, he's only two, and he's never been forced to leave something on his face with vapors going in his nose and mouth. It'd freak me out, too. We discussed switching from manual CPT to the Vest, but I told the doctor that we wanted to wait a little while longer because we did a "test run" recently with Cohen and the Vest, and he was, to put it mildly, less than thrilled. Emberlynn thought it was funny her first time on the Vest, but Cohen was completely terrified.

All in all, the kids' clinic visit had a positive outcome, despite the obvious reasons for clinic visits in the first place. They are both doing very well, and I can't ask for more than that.