My sons name is Jay. He was diagnosed when he was 2. How is your CF doing?
Did you know there were different levels of the disease. For instance, my son has a g-tube which he gets food through because he is never hungry, he has a central port that his IV's go through (do you have either of those?), he has a bad cough, on 4 neb treatments, vest and the many enzymes. What about you?
Jay is in the hospital alot, say this year he has been in 3 times already and is getting ready to go in again.
He has 2 friends with CF (lucky him), the boy is barely sick he has the enzymes and that is it no respiratory problems. His name is Bryce, he has a sister named Haley. She has sinus, respiratory, and the digestive problems. She is worse than Bryce and my son Jay is worse than either of them.
If you have any questions that I can help you with let me know. I will do what I can to share with you. Or maybe you could share information of yourself with me.