Hi, beckyb. I am a new member, as of a few minutes ago, and my child is 5 years old with CF. She was diagnosed at two months, 2 days old, after many, many doctor, and hospital visits, and even one 7 day admission to a hospital that claimed to be a CF center, without a diagnosis. The doctors continued to diagnos her with reflux and send her home. She had the malabsorption part of CF, and we were told she had a mild case, and only had to digestive enzymes because of the malabsorption. She was hospitalized again at 3 1/2 months, (my first day back to work...I teach), because the enzymes that were prescribed to her caused her to have ulcers in her mouth. That, I am pleased to tell you was the last time we saw any hospital room for her, until May 28. The doctor who tended to her said that was pretty remarkable for her not to be hospitalized more than that. (She had pneumonia in her right lung.) She stayed for 8 days, and had a "tune-up"...her first ever...while she was there. She does everything a normal kid does, goes to preschool, will start kindergarten in the fall, runs, jumps, plays, gets in trouble, and tells everyone that her friend's name is "spiderman"...(still haven't figured that one out yet)...I would say meet as many people as you can that have CF, talk to them about what it's like...and if there are CF support groups in your area, join them. I remember being sad, and hurt, and angry for about the first year, but after that, I learned that the most important thing we can do as a parent of a child with CF is to be there for them, and help them live as normal of a life as possible. I still teach school, and my husband works, our child will attend a public school this fall. I want her to do everything that other kids do.
I pray that you will find peace.
Rebecca, mom to Hannah 5 w/CF