Tuesday, May 29, 2012

How do you keep a CF kid healthy

"This disease must do wonders for my appearance because everyone keeps telling me how good I look!"

I saw this on a t-shirt and I thought "so true!". Everyone's always comments on how good Drew looks. And while I do appreciate it, it sometimes annoys me. What do you expect, a third arm? Like they're thinking "You harp on how sick he is and what a horrible disease this is and then he looks "normal" so he must be fine." I was told from the beginning that the blessing and the curse of CF was that there were very few outward signs of the disease. The blessing being that most people would treat him just like anyone else. The curse that people never gauge the full impact of the disease, or what we do to keep him looking the way he does. We spend hours, literally hours, every day doing breathing treatments and airway clearance. We give him up to 25 pills a day, in addition to 8 other medicines. Nutrition is equally as important because his pancreas is broken so his body doesn't absorb fat. And he dehydrates super easily so he needs a lot to drink, especially in the summer when he is outside and sweating. I hate making CF the topic of every get together, but I can't help but explain after I announce that he can't have his fruit until he eats all of his chicken nuggets or why I'm giving a 2yr old Gatorade. It's the opposite of what you do with a non-CFer. But he needs the fat and the sodium.

At our last clinic visit, his weight was down ever so slightly. We have never had a problem with his weight. It's actually been surprisingly good from the get go. Our clinic aims to get kids into the 50 percentile for weight and he's hanging somewhere around 80-85th and has been since before her turned 1. But at the last visit they noticed a small dip and told us to keep an eye on it because a dip can start a trend and we cant afford that. So we've been getting monthly weight checks at our pediatrician and he was going up about a quarter of a pound a month, until today when he was down a pound and change. The pediatrician commented that his weight was not at all concerning to her, he's still in the 80th percentile. It's not his weight that concerns me, it's his weight loss. Admittedly he has been sick and on antibiotics, but I still want to be able to at least maintain.

Drew is a terribly picky eater. Or a control freak. I don't know which. He won't eat much of anything, which is surprising based on his size. I want to treat him like the girls and offer him what we are having for dinner and if hes hungry then he will eat it and if not then he will just have to deal. And I do do that sometimes, but I find myself pouring him a Ensure Plus just to get some calories in. There have been days where he will have absolutely nothing but milk and he doesn't seem phased by it whatsoever. I, on the other hand, worry like a fool. I don't want him thinking that's okay. But maybe he's just not hungry. Or maybe it's the one thing that he can control in his crazy world of treatments and medicines and he knows it gets my attention so he plays that card because he's 2 and he can. I just don't know. We saw a food psychologist a little while ago who said to try to ignore him when he doesn't eat, but when he does we should respond with over the to praise - yelling, clapping, etc. We try that from time to time and sometimes it works but most of the time if he doesn't want to eat, he's not gonna eat. Tonight I told the kids they could have a special treat if they ate their dinner. The girls ate and got ice cream. He didn't eat but so badly wanted the ice cream and I so badly wanted to give it to him to get something in him, but I had to stick to the rules I set. Its better for our family in the long run. When the girls went away to play I gave him 4 scoops of Nutella, probably equal to at least as many calories as the hamburger I tried to get him to eat, if not more.

They recommend cutting his milk with heavy cream and putting butter on toast under the peanut butter. We search the grocery store for high fat yogurt, which is a chore in a world where everyone wants low fat everything. We add oil or butter and cream and as many toppings as we can to whatever he eats to pack a little extra in but I still worry. I know every kid, even every CF kid has difference caloric needs. Thank God that he holds on to the little fat that he does get or we would have a bean pole on our hands. Unfortunately, a lot of kids entering the late toddler to early adolescent years end up getting a G-Tube to feed them intravenously overnight and thought the day to help get all of the calories that they need to thrive. And while with CF we simply do what we have to do, I don't want a G-tube. I don't want another surgery. What I really want is to try Kalydeco and see if it helps Drew, but unfortunately we're just not able to yet. Anyone who has secret ways of getting in extra calories for their CFer, please share. 

On another note altogether, we found this super great neb mask holder that we absolutely love. Drew uses the fish masks and we were having some trouble getting the strap to stay put and not slide down. Enter Strap & Snap. This mask stays put and is comfortable and cute. I highly recommend it to anyone using a neb mask!

Finally, we had our second annual CF Yardsale this past weekend and raised $500! Yay for people who like to buy junk! And this concludes our fundraising for a few months until our Oktoberfest party in late September (save the date!). I'll definitely still be posting about different CF events too, just in case anyone wants to participate in anything!

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