As ignorant as this sounds, Frank and my attitude about CF is to try not to learn too much out of what our own kids are dealing with currently. You know, keep the blinders on a little bit. Clearly it is silly to pretend that more couldn’t happen, but since our thoughts already wander to the extreme of the disease more often than we like to admit, it’s easier to control those thoughts when we don’t go hunting for extra amount of Cystic Fibrosis information that we currently don’t need to apply. The thought of CFRD (Cystic Fibrosis Related Diabetes), organ transplants (he have heard lots of lung transplant stories but also have heard liver and kidney transplant stories with CF as well), and then the dreaded Burkholderia cepacia (I know I diligently try to avoid any more than what I already know about it), have the same effect as the one scary movie I have ever sat through – literally haunting (12 years and I can’t get this awful movie out of my head seriously).
Knowing our own attitude about in essence keeping to ourselves a bit about our little regimen we duly note that potentially other CF families feel the same way. When you do get into who does what and how long they have been doing it with meds and such it creates new thoughts. Why is my kid on more/less meds than theirs, I wonder if we will have to add that med, are we doing something wrong, etc?
But it is also interesting to note that each step, each med is added gradually. I worry about how we will remember to add another in, stress out about trying to get it done, feel really bad for missing it some days, then finally one day it’s totally part of the routine and fits right in. All of that said here is Maelee and Orson’s morning routine. This all happens before 7:30 am on school days. Sprinkle in the kids eating a good amount of something healthy-ish for breakfast and I feel pretty accomplished when we leave for school.