We are officially registered for the 2012 North American CF Conference! I signed us up last night and now just need to get our plan together for the rest of that trip, which includes 3 days in Disney World. It's going to be a long drive (that's right, we are driving!) and it might be exhausting and hectic, but I cannot wait for the moments in between all of that where they are excited and in awe and sad to leave their heroes. Lots of pictures to come!
This Wednesday I am meeting with the office of Senator McConnell. Based on the fact that he is at the Republican National Convention this week, I assume I will be meeting with his Chief of Staff. I'm ok with that. I need to go through all of the prep materials to make sure that I fully grasp the message that we are pushing across, which I believe mainly to be continued support of the FDA and the NIH to help our kids receive access to the drugs and services that they need to survive and thrive.
Drew is doing well. He had an appointment with ENT last week at which I was sure that they were going to recommend surgery again. I was wrong! The topical antibiotic that we had been giving him in his nose seems to have shrank the polyps, and the nasal sprays and rinses that we were doing have been helping to keep him clean and clear. We tried a new nasal rinse, which shocked him to the point of throwing up, so we went back to our spray. Its not the best method, but it might be the best method for a 2 year old.
I'll definitely provide updates after my meeting on Wednesday! I also have our "meet the teacher" preschool conference and a Quality Improvement meeting with the CF Parent Advocate Group this week. Its gonna be a busy one!