I'll take a stab at this. First of all; every CF patient and family is different. Alot depends on the individual CF patient in terms of the severity of their disease. Income and resources for the family also come in play.
The greatest challenge for our family; likely this will change over time, but right now it's maintaining a normal life; the balancing act of CF treatments, Doctors appointments, and school for the kiddos and work for parents. My husband travels at times, has to work long hours so I am the primary caregiver and rarely get a break. Being a parent is a full time job, being the parent of a child with CF just takes that responsibilty to a level most people can not fathom.
Our family life: (this is a typical school day)....Wake up 6 am CF child wakes up, Coffee for me Pills for my CF child. I starts morning nebs each neb last about 10 minutes(she does 3 nebs in the am) Non CF child wakes up. Put on VEST(airway clearance system) CF child vibrates in her VEST from 20-25 minutes. I encourage her to cough at intervals while doing vest. CLock is ticking away. Non CF child starts complaining he's going to be late for school because of his sister(we are rarely late<img src="i/expressions/face-icon-small-smile.gif" border="0">). After VEST now time for breakfast, which consist of a protein bar for my CF child ( no time for a real breakfast). Clock still ticking away. More pills with protein bar, antibitoics, vitamins, etc.Kids get dressed , I remind them to brush teeth hair, get backpacks ready, homework notes for teacher. Remind CF daughter where I will be today if she needs me, my cell phone , work etc. Off to school by 8-8:15. That's just our morning.
CF child does more treatments after school. then has afterschool activites, then does a similar schedule after dinner as she does in the am, then and we to bed. Then it starts all over again.
That is a typical schedule when CF child is well; When she gets sick, we do extra nebs and VEST, calling the doc alot, balancing insurance problems, pharmacy issues, making sure she does not fall behind in school. etc etc
CHanges at home include me only working perdiem. Used to work part time but it's not feasible with our schedule. I took 4 years off from work when CF child was born, which I am so glad I did..
My expectations for my CF child for school are the same for my non CF child. She will excel, get good grades be involved with sports, friends, make plans to go to college(ok she's only 8 now but eventually). I always tell her teachers "do not treat her any different than the other kids".
My daughter is lucky, she goes to a small school, with a very supportive community. everyone looks out for each other and I feel look out for the best interest of each others kids.
Hope that helps!
Good luck with your project