5 Ways I Help My Daughter Sustain Her Daily CF Care

When my wife and I found out that our daughter had cystic fibrosis, we decided to start maintaining a daily schedule for her CF treatment and care. Here are five ways that we uphold this routine and encourage our little girl to take an active role in her own care.

Sept. 15, 2017 | 3 min read
James Holoubek

My wife, Heather, and I were blessed with twins: a boy and a girl named Sebastian and Emma. It wasn't until she was one month old that we found out Emma had cystic fibrosis. We took it hard at first and realized our lives would be changed forever. But, we also knew that we would battle this disease alongside our little girl. We decided that we would start by tracking how we care for her every day. Little did we know, a very famous dog named Goofy would help us too.

Heather and I have a set routine that we use whenever we can (which is mainly on weekends when we are usually both off work). Here are five ways that we uphold this routine and help our baby girl sustain her daily CF care:

  1. When I wake Emma up in the morning, I always tell her how she is going to make a difference in the world. I then let her know how important it is for her and her stuffed animal, Goofy, to do their breathing treatment. She then jumps in her chair and starts her vest.
  2. At breakfast, my wife and I always tell her that she and Goofy need to take their enzymes to grow big and strong. We also tell her champions eat breakfast. We give her enzymes, and she makes believe she is giving Goofy enzymes as well. We do the same thing for lunch and dinner.
  3. At naptime, we ask her to go lay down and rest with Goofy. We tell her how important it is to rest and wake up to the second part of the day refreshed. We tell her brother all these things too. When it's finally bedtime, we let her know how important a good night's sleep is. We tell her to put Goofy to bed, and she usually falls right to sleep after that.
  4. At bath time, we let her know how important it is to stay clean, brush her teeth, and “clean” Goofy. We tell her that keeping clean every day will actually help keep her and Goofy from getting sick, and that good personal hygiene will go a long way in keeping her healthy.
  5. We make sure that she does some sort of physical activity for at least 30 minutes a day, whether it is walking around our neighborhood, jumping on the trampoline, or just playing outside in the backyard with her brother.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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A graduate of the University of Louisiana at Monroe, James now works as an Engineering Technician and Construction Inspector for the Louisiana Department of Transportation and Development.

As the father of Emma, who was born with CF, James is active with the Cystic Fibrosis Foundation. He is a member of the Partnerships for Sustaining Daily Care Champions Advisory Committee, and he and his wife Heather are also fundraisers for Great Strides Shreveport and the Northeast Texas Dallas Chapter.

James lives in Shreveport, La., with his wife Heather, Emma and her twin brother, Sebastian, and their two German Sheppard's, Striker and Bear. You can connect with James on LinkedIn or friend him on Facebook.

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