Random Things

We had another check-up at the CF Clinic yesterday. It seems that all doctors are in agreement that Malacia is what's causing this sound Drew is making and not CF. That's good news, I guess. They are still going to do a bronchoscopy sometime soon to look into his airways with a scope and identify for certain that this is the problem, but all signs point that way. Its just something that he will need to grow out of. As he gets a little older, the cartilage that makes up his trachea will get harder and he will no longer make the sound hes making. If any other kid without CF would have malacia, they would sound the same way Drew does. So basically, if you hear him and think "Dear Lord that kid sounds atrocious", know that he is not sick and will grow out of this.

We also got some other great news at the clinic. Drew is in the 80th percentile for height to weight! The goal of the CF Foundation is for kids to reach the 50th percentile by age 2 so hes doing fantastic. You might be thinking "So what?" but as a refresher, weight gain with CF can be very difficult as the pancreas cannot produce the enzymes to break down the fat in food and therefore the body cannot hold onto it, making weight gain difficult. We work very closely with our dietician to monitor Drew's caloric intake - calories per ounce, ounces per bottle, and bottles per day - so that adjustments in the amount of enzymes he takes can be made to ensure proper fat and nutrient absorption. Our dietician is a rock star. I talk to her several times a week about how Drew is doing, what his poop looks like (shiny = fatty = malabsorption) and how many pills he needs per bottle. Over the past 10 years, research has shown that children who have better weight gain and BMI have better lung function tests when they are older. Their growth really strongly correlates with their health overall. So the fact that hes already in the 80th percentile makes me SO so happy. Hopefully this will be good news for the future.

I asked if he could get to fat and the answer was basically no. If he was at like the 99th percentile when he was 2 and was so huge that he couldn't move and play, then it would be come a problem, but right now hes just a pudgy little baby boy that very few people thought he'd ever be, happy as can be. He is just about 3 times bigger than he was when we left the hospital 3 months ago (he was 1mo. old the day we got to go home).

One more thing. I was reading a blog the other day of another mom with a child with CF, and she had a story posted that I wanted to share. Her daughter was in the hospital for 5 months after she was born and when she finally left the hospital she had a g-tube. She and her family participated in the Great Strides Walk, as we did this past spring, and at the event she had the opportunity to talk with someone from the foundation. They spoke with this woman about what hope there was for finding a cure. The woman from the foundation told her that the only hold-up was money. MONEY!! I had mentioned early on when I had started this blog that CF is considered an orphan disease and therefore receives NO FEDERAL FUNDING, relying only on donations from individuals and corporations to fund their research. Lack of money has shut down numerous clinical trials, one of which could have changed our life. There are several very promising, very life changing, life extending drugs in the pipeline right now, but without support they may never come to fruition. We thank everyone so so very much for all of their support this past year during the Great Strides walk, and ask for your continued support of the CF Foundation and of Drew as we continue to fight this battle until we win.