Hi, Country Girl's mom here. I see you have recieved alot of responses so that is good. We are retired AF. Someone mentioned the exceptional family member program. That program should reach across the services.
My husband was (is) in the medical field. Like Anna' said, we spent 3.5 wonderful years stationed overseas, Germany. We had all our ducks in a row before my husband even put in for that assignment, just in case he was selected, we were prepared for the next step. It is not a given that we would be allowed to accompany him simply because he was selected, they could have said no, it was up to his gaining commander. My girls were 7 & 10 when we went over and because of where we were going we had the utmost confidence that they would recieve excellent care. We were never enrolled in the EFMP (or CHAPs:the old name for the same program), we managed to stay out of it. We had our own reasons, but that was in the "old days" starting in '90 when the girls were diagnosed. Over the years since diagnosis, we have been assigned to 7 different bases, my girls have gone to 9 different CF clniics in 7 different states and 2 countries since diagnosis in 1990.
Not everyone can handle being overseas with a 'sick' child, but then again, not everyone can handle being a military wife either. Your daughter is in a different kind of situation now, not only is she a Marine Corp wife and has to know how to take care of all things for when her husband is not around, but she now has to do all this with a newly diagnosed CF toddler. She can do this!
www.cff.org is the Cystic Fibrosis Foundation website, a great place for information. There used to be a quarterly newsletter that would be mailed out but that seems to have dropped. I see one every once in a while. Keeping up with the latest news from your g.son's clinic appts. and simply asking your daughter what/how things are being treated will help you understand what is going on. Not every CF'er has the same issues. Sadly though, those issues often change over time. You will learn oh so much as time goes by. Depending on how often you see or will see your grandson, keep a bottle of enzymes around and learn how to give them to him. He will most likely learn to swallow them in the next year or so. In the beginning, Anna' got to eat desert first just to take her enzymes. Learn about CPT and how to do it. Chest physio therapy. So many use a vest or hand held percussor for CPT but it is always a good idea to learn how to do it the old fashioned way, manual percussion. Your daughter should ask about it when the time comes.
Back to being military and CF. Plan ahead as much as possible, knowing of course that it can always change. I don't know how the Marine's work when it comes to assignments or whether your son-in-law is enlisted or commissioned. My husband was an officer so we had an idea of when our next assignment was due and where we were going. When the time comes have your daughter research CF clinics at their next potential assignment. She can find a list of CF clinics on the CFF website. I believe you can even find overseas cf clinics there too. Base housing is a plus for so many reasons, this being one of them. The last thing she will need at a new assignment is feeling alone with a 'sick' child. Base housing offers a fast way to meet new people and an instant support system.
I think everyone else gave you plenty of ideas on where to find info about CF so the foundation website was my only one.
