Carter was diagnosed at 3 weeks old as having cystic fibrosis. It was diagnosed through his heel prick test. He was losing weight as a baby even though he was feeding most of the day. This was because he wasn't digesting any fat through his milk. As soon as we got the diagnosis he was put on medication straight away, having 6 lots of syringe medication 3 times a day. He started to gain weight!
He has hospital appointments every 8 weeks and will have them for the rest of his life. The nurses give him cough swabs each time to see if he has cultured anything in his throat/lungs, in which case he has to be admitted to hospital for 2 weeks each time on iv's or he is given medication at home.
He is only 4 and has had his fair share of hospital stays. Even though we get our own room each time(due to his condition) it is still a very stressful time for him, as he still doesn't fully understand why. I am trying my best to make each stay that much better. His own superhero quilt would make him feel very brave I think, as he is always saying he wants to be a superhero.