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The Importance of Organization When Your Child Has a Rare Disease

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Having a child with a rare disease is a loving, caring, busy, never-ending, supporting, advocating life. For my child, we have a primary care doctor, 12 specialists, four therapists, three nurses, two case managers, and the list continues. For most, managing this can be difficult, which is why organization is extremely important. Here are some of the ways I have learned to manage Talynn’s care.

Medications and Syringes

One of our cabinets in our kitchen stores all of Talynn’s medications and syringes. We have all of the opened medications on the bottom and the non-opened on the top so we know what is needed. The other section of the cabinet stores her syringes. We have them separated with a silverware tray in order of size so they are easy to find.

Extra Supplies

We were able to snag this amazing 10-drawer cart from Micheal’s for $25 when they were having a special. In this we store extra syringes, pulse oximetry probes, nasal cannulas, CPAP mask, g-tube extensions, g-tube, tape, deep suction tubing, and nebulizer tubing. In the short two-drawer container we have her emergency gravity bags, g-tube bags, and Ambu bags. The crate holds all of Talynn’s nursing papers and notes. Extra oxygen tanks are also stored in the closet on the left.


Explanations of benefits, medical bills, weight checks, appointment follow-ups, visit summaries, trust funds… where do you put all of these things? I have created a filing system. I have a file folder for 2016, and inside that folder is subfolders labeled bills and explanation of benefits (EOBs). The big binder has all of Talynn’s appointments, doctors, weight/height logs, surgeries and everything in between. I got dividers and labeled each of her doctors, therapists, and programs on each one. When Talynn was younger and undiagnosed, I took her binder to every appointment so I would not leave out any information in hopes to get her an answer. Now that she is diagnosed, I have been able to step back from doing this because she has an amazing team of doctors who communicate and listen when I explain Bohring-Opitz syndrome to them.


I use to carry around a yearly calendar and write down all of the appointments, but since having child number two, I forget everything. I have started using Google Calendar! I love it! I upload all of our appointments and then it will notify my phone with them. My favorite part is I can share the event with my husband, mom, or anyone. This helps my husband know where I am and which appointment we are at (it gets confusing!) and allows my mom to know which day she has one of my girls.

It can be very overwhelming, and I hope some of these organization tools can help you. Thank you for reading, and be sure to follow Talynn’s Journey and Bohring-Opitz Syndrome Foundation on Facebook!

Follow this journey on Talynn’s Journey.

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Originally published: March 13, 2017
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