When my girl was diagnosed with (recessive) polycystic kidney disease at two days old I didn’t have much thought about what that meant in practical terms. I didn’t think about the added paper (and paperwork), medication, scheduling, labs and appointments I had to track, nor how that would affect my ability to focus on my home.
The first time I realized that I would need to be the gatekeeper (and all that entails) was about 6 months into our journey with two kids who have special needs. When I had to pay over $50 to copy their files I knew there had to be a better way so I started binders for each of the kids so I could collect (for free) reports from all their doctors/therapists (time saver too). Back then it was so simple! One binder per child! Ha! I laugh at that mom from back then, who thought that one binder would hold it all, says the woman who now has 5 binders for each child.
I also realized that I was the one keeping everyone else on track with tests, lab work, appointments, funding applications, and the ever-important meds. In order to do that I’d have to find a better system because we were able to apply for state funding for both kids and they needed all the medical paperwork on their care.
One of the things we do in home to communicate as caregivers for the kids is a dry erase board in the kitchen. It was as much a reminder to myself for sick kid things as it was for my husband. I listed upcoming appointments, meds needed, therapy appointment changes and anything else related to the kids’ care. It helped. We don’t need it as much as we did in those early days because we have more established Roles and Responsibilities (honestly my husband said those words to me while discussing splitting up the kid items).
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