Organization Tips for Parents of Children With CF

Caring for a child with CF can be a lot to juggle — from the many medications and daily treatments to the endless doctor's appointments. But I’ve found a system that helps me stay organized and stress-free so that I can focus on what really matters.

April 30, 2024 | 5 min read
A professional headshot of Marlenny
Marlenny Linda De La Cruz
Marlenny and her son smiling in front of bright pink flowers

My son, Anthony, is in the fourth grade and learns daily about how important scheduling is with cystic fibrosis. After his tune-up last summer, I have noticed his maturity and growth this past year.

He has endured more than some people can endure in a lifetime and still stands strong and brave. Despite the challenges, Anthony brings joy to others and enjoys life to the fullest. We find peace in creativity by crafting and making music together to soothe us on long days.

Living with CF can be challenging, but it doesn't have to define your child's life. Anthony doesn't let CF get in the way of his life, but he often discusses his hopes and fears with me. I always reassure him that things happen for a reason and that miracles can happen when you least expect them. Thankfully, Anthony has the right support system and a positive attitude so he can thrive with CF.

I read about the CF community and was delighted to discover many inspiring stories about warriors and families who have overcome challenges with CF. I have been learning organizational skills all my life. Raising a child with cystic fibrosis has taught me the importance of being extra organized. I understand the struggle of staying organized when dealing with medications (17 prescriptions, to be exact), treatments, appointments, doctors, and the general chaos of life. It seems that organizational skills have been passed down to Anthony. He loves organizing his belongings.

Organizing life with cystic fibrosis is tough, especially when it comes to planning meals for the week. Anthony's Trikafta®, Pulmozyme®, and medication refill documents are organized in folders and binders in our home. Thanks to scheduling and planning, we got it down pat!

It's easy to feel overwhelmed, but I find comfort in finding creative ways to manage our life with CF. I want to share how we got organized and made life with CF less stressful, so here are some organizational hacks that help me reclaim control and bring a little peace to our daily routine. 

Medication Management 

  • Master the medication list. Create a digital or printed medication list with dosage instructions and refill reminders. I like to color-code medications for different times of the day. Preparing a medication list is helpful, especially when visiting a specialist or dealing with pharmacy calls. 
  • Keep a weekly pill organizer. A segmented pill organizer for each day of the week simplifies dispensing medications and avoids last-minute scrambling. However, it is also important to remember to keep specific prescriptions, like Pertzye®, in their original container to track their expiration. 
  • Set refill reminders. The most helpful way to ensure we never run out of vital medications is to set calendar alerts on my phone or use reminder apps. Staying ahead of prescriptions makes our CF routine smoother. 

Treatment Time

  • Use a visual schedule. Create a colorful chart with pictures for younger children to help them feel in control of their daily treatments. Let them check off each therapy as it's done to create a sense of accomplishment. 
  • Create designated treatment areas. Set up designated areas to do treatments, and let your child pick a new location every few weeks to prevent boredom. A three-drawer dresser is an excellent option for storing all the treatment-related items and works wonders for us. 
  • Use timing tools. I created a YouTube playlist for Anthony's night treatments with fascinating visuals. Use timers or playlists to ensure treatments are done in the recommended time. Create playlists with funny songs or themes based on your child’s preferences. Anthony's favorite is dinosaur-themed instrumental music. 

For Busy Appointments 

  • Keep a medical binder. I keep separate binders for each doctor and hospital to store notes, results, and prescriptions. I also use a filing cabinet to organize and easily access recent medical forms. 
  • Create an appointment calendar. Colors are very effective for remembering and organizing things, particularly for cystic fibrosis. To avoid last-minute rushes, color-code your calendar for various appointment types and account for travel time. 
  • Have questions on hand. Prepare a list of questions for each doctor's appointment and email the medical team an updated summary of your child’s condition in advance. This can expedite extended visits and ensure comprehensive care. 

If you find it challenging to keep track of your child's medications, schedules, and symptoms, you can always embrace technology to make things easier. Many apps are available that are designed explicitly for medication management and tracking.

Personally, I recommend Medisafe, as it has been a lifesaver for me when managing my child's medications. You can also find other apps that work best for you. These organizing tips have made a massive difference in my life.

Implementing these simple hacks can streamline your routines, reduce stress, and allow you to focus on what matters most — your unique child with CF. Remember, being organized and caring for yourself can help you better care for your child. Here's to calmer days and more peace in your CF journey! 

Interested in sharing your story? The CF Community Blog wants to hear from you. 

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.

Share this article
Caring for a Child With CF
A professional headshot of Marlenny

Marlenny Linda is a loving mother to her son Anthony who was born with cystic fibrosis. She is a bilingual advocate who is passionate about helping families with children with disabilities. Marlenny has seven years of experience teaching English as a foreign language (TESOL/TEFL) and a Bachelor of Science in Liberal Arts. She currently creates engaging and SEO-optimized content that informs, connects, and inspires. Marlenny lives with her mother and son in Orlando, Florida. In her free time, she enjoys singing, creating, and sharing music on social media to uplift others. You can follow Marlenny on LinkedIn, Pinterest, Facebook, Twitter, and her blog. And you can contact her via email

Recent Community Posts
Finding Stability in the Unknown
Blog | 6 min read
Advocating for Health Equity in Cystic Fibrosis
Blog | 6 min read
Giving Myself Permission to Forget
Blog | 5 min read