April 11, 2011

Very Cool Weekend!

This weekend was the CF Family Info Day at our clinic. It was fantastic, and I learned SO MUCH! I even met two lovely ladies from CysticLife.org which was very cool. It made me feel like I'm not the only one going through all this! It was just amazing to sit in a room filled with people that either have CF, or were parents/guardians of people with CF, and they all have the same kind of thinking. Some were in the very beginning of their CF journey, and some had been dealing with it for more than 20 years. It was also amazing to hear one of our pulmonologists speaking in such great deal about CF, and possible future medications. A small group of us got to "pick her brains" for a while at the end, too. It really makes me appreciate what a great CF team we really have. I felt like a kid pointing out to my CysticLife friend all the amazing people on our CF team.

Azer has been doing great, I think. He threw up a few days ago, had a sore throat and a fever. The next day, he was fine. This week, Reema ended up with the same thing, so it was obviously a virus. I have noticed that when Azer gets a virus, he recovers from it much more quickly than Reema (unless it's the kind that graduates into your chest).

I have noticed improvements in his pain when he takes ibuprofen before we run, or before he has practice. I gotta say, I also notice when he does not take it. So, it is helping. I'm trying to keep plenty of salt in his body by adding some to his Gatorade, to his morning bolus and his night feed.