Thanks for asking! He is doing better. He is less tight, his stomach is better (can't remember if I said he was on a really strong antibiotic that really hurt his stomach). He is in good spirits although bored. His pft's are 23% which is what they were at the beginning of his last tune up, so at least they haven't gotten much worse. He is finding he needs to wear his O2 all the time now, where he used to be able to take it off for an hour here or there. But overall he's doing the best he can. I am always so proud of him that he is always so positive. We'll just keep hoping for lungs ;-)
Katy