Kim's tips idea

[Guest guest]

(Note: I wrote my response after reading n's response. I think this

is a great idea.)

I wish I knew what we did right... But for some reason Ricky, like many

other kids with CF, in my experience (seeing them in the hospital and

meeting their parents at conferences and other events), takes his illness in

stride. He never complains (well, I guess I shouldn't say never, but...

rarely?) about treatments, and always tries to see the positive in his

hospital experience (i.e., I hate getting an IV, but I know it will help me

get better). He really does do so well with it.

I suspect this is unusual in kids only because my four year old, Andy, who

doesn't have CF, has a terrible time with any illness, from a cold to the

stomach flu. Probably because being sick (and having trouble breathing,

etc.) has not been a part of his life as it has for Ricky.

I don't know what we've done to help Ricky along this path, but whatever it

is, I hope that other parents can figure it out. Maybe just treating the

treatments and pitfalls of cystic fibrosis matter-of-factly and believing in

letting the child know what is going to happen. Giving them a choice. A

sign hangs on Ricky's door and in his room this hospitalization. It says

something along the lines of " Doctors, nurses, lab techs, respiratory

therapists: Please give me a choice in my treatments, such as how to do

CPT, which finger or arm to poke. Explaining the procedure to me makes me

feel much better. "

Maybe that says it all!

What Kim said about questioning doctors... Always pursuing an answer... I

think that is very important too. If someone tells you it can't be done or

they've never heard of something... Get a second opinion. Your kid's life

depends on it.

Becky (formerly Whicker), mom of Ricky (7 next week!) with CF and Andy

(4.5) no CF