Hi Catherine, This can be a very rough time, especially if you are new to CF. When we were told our 3.5 yr old had CF all I could think of was that she was going to die. All I knew of CF was the little cans by the register when checking out at a local restaurant to collect money for research or to help out a family. That was back in 1990 and the median age was 18. Rachel was born two weeks after that diagnosis. So much has changed in the last 19 yrs.
This is a great site to see how different CF is in every person, even siblings. You will see that there are people on here with CF that are in their 20's, 30's, up to 50's & 60's. Some have children, which we'd been told back then was pretty unlikely. Sure, each has had their rough spots and some have received the ultimate, a transplant, but there is hope. My Rachel has been quite lucky, she was not admitted for antibiotics until she was 10 (and to be honest she didn't really need it then, whole other story). She wasn't admitted again until she was 15. She's still doing well. Anna had it rougher and received a double lung transplant at age 20. We're currently looking at a second for her but she's not given up and to look at her, you'd never guess she needs another one. My girls have a friend that also has CF. She's a year older than Anna and recieved a double lung tx just this spring. She made it to her last semester in college and was a RA (in fact she was Anna's RA then Rachels) before needing a tx. Her brother also has CF and his pft's are at a 100%, he's a little older than she is.
There is no predicting how things will be for your son, you just do everything you can to keep him healthy. As he grows, get him physically active and try your best to not let CF be an excuse for him to not participate in anything he wants. My girls went camping, swimming, rode their bikes, were active in Girl Scouts and went to scout camp. We lived overseas for 3.5 yrs and they went on overnight school trips. Sure there's a little extra work on your part to let them do these things but it's important for their well being. To this day, Anna talks about being the only one in the family to travel to Greece, on a 5 day school trip at the age of 12. There's a guy on here, Robert321, he was in marching band and played several horn instruments.
I hope I've offered some hope.
My girls are below.
Thanks for ALL of your help.