Hi friends! Just a quick update today about our most recent visit to the CF Clinic this past Tuesday. For those who don't know, weight gain with Cystic Fibrosis patients can be a real challenge. Charlie's pancreas doesn't secrete digestive enzymes so he can't digest his food without taking enzymes first. Lots of CF patients are very thin and struggle so much with gaining weight that they need feeding tubes. It's also really important to maintain weight because higher weight leads to higher lung function. In addition you want those extra pounds because if a CFer gets sick they lose weight very quickly, so this gives a little cushion in case of illness. We have struggled with Charlie's weight up until the last year or so, and the main reason it has gone up has been because we were able to get insurance to pay for Pediasure 1.5, which we use as a supplement to his already high calorie meals. Another thing that has helped us is Periactin (which we use as an appetite stimulant), the combination of those 2 things helped us climb out of the "off the charts in a bad way" weight to length ratio he had for so long.
The craziest bit of news we received was that Charlie, who is only 3, now weighs 44 lbs! Holy schnikeys! This kid keeps growing and growing, it's nuts! He's also 42 inches tall, so this puts him off the charts for both height and weight for his age. In terms of weight to length ratio (the one we care about) he is 93rd percentile! It's so crazy that after 2 years of struggling with weight gain (especially as a baby) Charlie finally caught up and is exactly where he needs to be! Thank god for Pediasure 1.5!
Ummm, only 2 chicken nuggets and all these vegetables? What the hell guys?
Now that Charlie's weight is so high and he's growing so well we got the green light to start decreasing some of his calories to make sure he doesn't get TOO big or overweight. So we've started giving him only one Pediasure 1.5 per day instead of two and cutting down his portion sizes. We're also trying to get him to snack on vegetables and fruits too, but he is NOT particularly happy about it. For 3 years we've been encouraging him to eat eat eat all the fatty and salty food he wants and now all of a sudden we're pushing the vegetables and only giving him one hot dog instead of 2? How unfair! I'm pretty sure that this new "regular" calorie diet will be good for him but it's definitely weird after 3 years of "Charlie take another bite, finish your cheese, drink your shake" etc etc. Although I'm kind of glad we can cut down on the calories because he was starting to get just a bit pudgy IMO, quite a great problem to have with a CF-er though :)
Other CF clinic news: Charlie is doing great overall, not just in weight. His CF related asthma is under control, he has no baseline cough, he is culturing no bacteria in his lungs according to his throat culture from back in November (we eradicated the s. aureus AND the pseudomonas thanks to the ridiculous amounts of antibiotics he was on back then), and his sinuses look clear. Pretty amazing after such a rough November! We did his annual blood draw for labs and another throat culture so hopefully those will come back with more good news :)
So that's my quick update- great news all around and we're very happy!