Hi,
I am having some of the same issues. I feel like people don't know what cystic fibrosis is, it's just this big word to people, and they don't know that germs can be very bad for our children. I don't worry about people bringing sick kids to my church because our church is so small, most people know not to do that, but I worry about other things, like making sure his paci is not picked up off the floor and returned to him without being washed. Or did the nursery worker wash hands after nose blowing. I know I want my child to be treated normally, but if there are are steps we can take to keep them healthy and feeling good, I want to take them. Have you thought about people wearing perfume? I know sometimes people have held my four-month old and he comes back smelling sweet. According to older and wiser members of this forum, this could be an irritant, that over a slow period of time could cause inflammation. I would like to write something so people would know a little more about how CF affects the body, but at the same time, I don't want him treated like a fragile creature from another planet. I will see if I can come up with something for us - some logical tips and info that would be helpful for people to know. Feel free to PM me any time because our situations sound familiar. It sounds like we are at the same point in dealing with this diagnosis. My son also presented with MI.
rosesixtyfive, mother of Sam, 4 months old, (DDf508)