From the article: What to Do After Your Child is Diagnosed with Cystic Fibrosis
Your child has been living with cystic fibrosis for some time now. It's been a struggle for her, and for you as her parent, but you've found a way to settle into a routine. Thinking back to the early days after your child's CF diagnosis, is there something you wish you would have known that might have made things easier? What advice would you give to parents whose child has just been diagnosed with cystic fibrosis? Share Your Tip
Write Everything Down!
- Our 3 year old daughter has cystic fibrosis - she was diagnosed when she was 10 months old. I remember how overwhelmed my husband and I felt at first. We were both so afraid that we would forget something important. We started writing everything we did - and everything SHE did - down in a notebook. And I mean EVERYTHING! Every time we gave enzymes, every dose of medications, every time she ate, what she ate and how much, every time she burped, cried, spit up, or passed gas, what her BM's looked like ... Whatever it was, if it happened, we wrote it down. Doing this helped us make sure we didn't miss anything. We still write everything down today. It helps keep us organized, and it provides a good record of what happened when - which is very helpful to our doctors when they want to adjust medications or treatments.
- —Guest 65roses_mom
