Importance of Organization for a Child with a Rare Disease

By mother and advocate Taylor Gurganus

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, twelve specialists, four therapists, three nurses, two case managers, and the list continues. For most, managing this can be very 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 ox probes, nasal cannulas, Cpap mask, Gtube extensions, Gtube, tape, deep suction tubing, and nebulizer tubing . In the short two drawer container we have her emergency gravity bags, Gtube bags, and Ambu bag. The crate holds all of Talynn’s nursing papers and notes. Extra oxygen tanks are also stored in the closet on the left.

Paperwork

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 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 that I would not leave out any information in hopes of getting 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 her condition to them.

Appointments

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 appointments. 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. Please feel free to email me if you have any questions. Thank you for reading and be sure to follow Talynn’s Journey and Bohring-Opitz Syndrome Foundation on Facebook!

(You can reach me at [email protected])