Baby Fat

Just a quick note to let you all know that Camden's starting to chunk up again. Yeah! He weighed in at a little over 22 pounds at the CF clinic last week. Two months ago his combined height to weight ratio put him in the 9th percentile. That's not good. It would probably be okay for any other kid but they want kids with CF to be at or above the 50th percentile. Weight correlates to lung function. So, the good news is that at the last weigh-in he had soared to the 44th percentile! He gained two pounds in two months. This just goes to show what adding heavy whipping cream to your whole milk and cheesy spread to your mac and cheese will do. He also eats bacon for snacks and we put bacon cheddar spread on his crackers. Frosting on cookies? Why not! Full fat all beef hotdogs? Yup. Cream cheese, check. Melted butter on everything? YES! Basically, he eats everything we are supposed to stay away from and it is working. We'll check in at the clinic in a couple of months but we expect him to be doing well weight wise.

The last few days have been rough and trying as he has decided he doesn't want to do his nebulizer treatment anymore. There is a LOT of screaming and crying and by the sound of it you would assume we were trying to cut his legs off with a rasp file. He sounds like he is being tortured but it is all a show since the nebs don't actually hurt. It is a battle of wills and it is exhausting. After a few days, it seems like he may be coming around to the realization that he can't actually win. This is a good thing for everyone involved as this is not a battle any of us enjoy going into twice a day.

The reason he may be fussier is that he's been sliding into a cold or something like it. His nose got stuffy and then now it is running. We knew he would start to get sick once he started childcare. In reality, he needs to get sick. He has to encounter these germs at some point. Better he miss some childcare then miss school later when he is older. What we're really afraid of is respiratory infections he can't fight off. Anything that lasts longer than 10 days with coughing and they want to see him to start antibiotics. Most of what he will get will be viral so the antibiotics won't help but kids with CF are really susceptible to secondary bacterial infections when they are fighting off colds. We'll see how this progresses. He didn't cough during the day but was coughing last night in his sleep because his nose was draining back. That's the first time in his life he has had a cough or a runny nose. We've done an incredible job keeping him away from germs thus far. How many kids get their first cold when they are 15 months old?

In CF news, there was just a paper published about a new breakthrough in research. One of the mysteries in CF is that two people with the same genes will have different severities of CF. Some will have mild lung problems while some will have bad problems. This suggests there is more to the picture than we know. Chelsey and I were just discussing this the other day and I was saying that there are probably genes that we don't know about yet that interact with CF in ways we don't understand. Well, that's exactly what they just found. Scientists have shown that variations in a gene known as IFRD1 can change how a person's body reacts to the defective CFTR gene (which is what causes CF.) I'm grossly simplifying here but basically, some variations of the gene make lung damage more likely while some variations make it less likely. The research is really really early and not to the practical level yet but the implications are huge. Now that scientists know about the gene they can test people to see which variation they have. If they have the worse variety, doctors will know to treat inflammation more aggressively. The next step after that would be for scientists to look for ways to change the IFRD1 gene. Knocking the gene out in mice made their infections last longer but in the end they had less lung damage. New drugs based on this finding are a long way off but at least knowing what target you are aiming for is an enormous step in the right direction.

By the way, this research was funded by the Cystic Fibrosis Foundation so thank you to everyone who donated money to our Great Strides team last year. This is exactly the kind of research you help fund and this kind research is going to help Cam live a longer healthier life.