Originally Posted by kbochniak
BTW - is there anyone else out there who is questioning vaccines for a special needs child? If he didn't have any problems we probably would not vax at all but I'm considering doing selective vaccines because of the possible respiratory complications of his condition.
Yes. We did selective vaccinations (with vaxes split to more visits than the standard schedule) specifically because there are some things that, given CF, she really really really needs to not get. Are you doing Synagis this season? If it's still RSV season where you are, you should ask about it, though if he is an only child and you're staying home with him, you can take lots of precautions. We did Synagis last year, but not this year since she's doing fine and has no lung problems. RSV in an infant with CF is to be avoided if at all possible.
I'm really really glad to hear that you've been able to keep breastfeeding; there are a lot of folks who get irretrievably derailed to formula during the diagnosis process, and everything I read, plus all the folks at our CF center, agree that breastfeeding for as long as you can is the best path for kids with CF, especially given both the nutritional needs and vulnerability to infections they have. My daughter's still going strong at 16 months, which is a blessing because she's entered the toddler-picky-about-food era and it's a struggle keeping her weight up.
Since you're a nurse I obviously don't have to tell you about the need for constant handwashing, but I will say that I lament how hard it is to make everyone else around you and the baby follow through with it!
I applaud you for making the decision to stay home with your son. It's extremely difficult with a brand new CF kid to get everything they need taken care of, plus protecting them from kids with respiratory germs. If he's doing great with no lung involvement and strong overall health when he's bigger, then playgroups and daycare sorts of settings may make sense, but not when he's so small and you don't yet know how his health is going to play out in the next year.
How are you handling all of this? It's a huge deal. Are you getting enough support? How is your husband taking it?