Today (6/27) was his latest CF clinic visit, at 11 am. Ricky’s spirometry numbers were down, his lungs sounded a little junky (not awful though), and as I suspected, he has lost a pound. (His appetite the past few weeks has been horrendous.) He has lost 5 pounds in the past six months (and he definitely looks it) and his height growth has also slowed down.

Soooo, we got some new prescriptions: One for Bactrim, two for normal saline and hypertonic saline to put together so he can start hypertonic saline treatments, and one for Periactin, an antihistamine that is supposed to increase his appetite. We also took home some chocolate Scandishakes and Carnation Instant Breakfast cans along with an action plan from the nutritionist.

Good news: Sinuses looking great, tummy soft, and he’s compliant and actually knows a bit about his meds. They want us to educate him more about his meds so he can recite stuff himself. I can do that.

We will start the Bactrim tonight, the hypertonic saline as soon as the pharmacy gets it in, and the Periactin as soon as approval is obtained from the psychiatrist. The CF doc just wants to make sure that the psych meds don’t interfere with the Periactin and vice versa.

Tomorrow we are going to see the NP at the gastroenterologist’s office because Ricky’s reflux has been increased. Since that’s a darn good reason for him to maybe not want to eat, maybe they’ll want to increase his anti-reflux meds?

Before I go I want to thank all of you who continue to send letters, cards, stickers, pictures, books, and everything else! We just renewed the PO box. Ricky and Andrew love getting mail and so we’re going to keep going. The mail really gets us through the tough times.