To all who have responded,
I am truly overwhelmed by your words and the genuine welcome. I do wish I had done this sooner, I never realized that having this kind of support system would help, but when I got home from work today I found myself wanting to check on this site. Well, a little bit more about my son Mark. Mark has the delta 508 gene and this was a shock to us when he was born, no other records of anyone else in the family with CF. Mark has been very fortunate as he has not had to be hopsitalized since his birth. The CF center here in Cleveland is wonderful and from what I can tell they are up on all the current treatments. Mark has the typical digestive problems and does have psuedonomas in his cultures, but his treatments are manageable. Does anyone else have their child or themselves on the high dosage Motrin therapy? Mark takes 1700 milligrams twice a day and that appears to really keep the lung inflamation down. He is on Pulmozyme, albuteral, and we do Tobramycin every other month, then switch to Cephalexain the opposite months.
I have to keep a spreadsheet and chart on the fridge to keep track of it all, cause I have to tell you that at 14, Mark believes he is invincible and if not for me hounding him, he would ignore alot of what he has to do.
I do see on the sight that alot of parents talk about the nutrional supplements, Mark hated them, so we tried an alternative. Whole chocolate milk. high in fat and calories and he drinks about 1/2 gallon a day. Might be something you can try if your kids dislike the supplements.