I'm a little worried that they may have forgotten who we are, given that for the past 20 months I've spent a significant amount of time on the phone and in the office talking with a doctor or nurse or someone about something concerning to us on a weekly, if not sometimes daily, basis. I am happy though! I'm not sure if Drew is finally outgrowing the malacia and that's allowing him to clear his secretions better, or if the hypertonic saline that he now gets twice a day is really helping to replace that lost surface liquid and allowing him to function like someone without CF, or a combination of the two. All I know is that I'm please with the way things have been going and hope that they continue that way.
As I type this, Drew is screaming bloody murder at my feet because I won't let him play with his inhaler. There are certainly worse things in the world. He's had a funky nose for a couple of weeks now. He usually wakes up with it being all crusty, and then throughout the day its a combination of running down his face and crusted shut. The crazy thing is that it hasn't moved down to his chest at all. I'm a little concerned about the nose given the amount of time its been going on, but I try to think of him like the I do with the other ones, and if they just have a nose issue I'm not running them to the doctor. I'll let it go another couple of days before I call someone to see if we need to take action.
Tomorrow is the day I get to tour the CF Research facility at Cincinnati Childrens. I was supposed to go last week but the back injury prevented me from attending. Its 2 hours long, and even if they just tell me stuff I already know, I'm always interested in hearing the information they have. I'll definitely post about that shortly after it happens!
Here's to continued good health!