I like organization. I like being able to know where to find what information I need quickly, especially important information. This has become important with my children and their special needs. I have found the easiest way to organize it all for me is to use binders. I have a lot of binders for a lot of things and they make life easier for me. Here, I want to talk about the medical binder we have for Mary.
I started this binder a few weeks after Mary was born. We were already receiving several referrals and setting up so many appointments that I was getting overwhelmed trying to keep it all straight. I decided to go to the organization system that works for me and got a binder started.
Here is what you will need:
- 2” binder (I had started with a 1” binder but outgrew that by the time Mary was 6 months which is why I recommend a 2” binder)
- 1 pack of 8 dividers, or 2 5-packs depending on your needs (I chose these for the pocket to hold papers until I can hole-punch them )
- Business card pages (I use these)
- Notebook paper
- 3-hole punch
In the very front of the binder, I have the business card page. I pick up business cards from each of Mary’s providers. I have them from her pediatrician, early intervention team, the Early Matters Coordinator at the Down Syndrome Association, and so on. I want a place I can quickly and easily get their information.
Behind that is a bunch of loose leaf notebook paper. I use this to write down notes, questions to ask the doctor at the next appointment (because I rarely remember them the day of), To-Do lists for Mary’s care, etc. Again, things I want to be able to see quickly and will need to refer to often are near the front of the binder.
I also keep a printout copy of her insurance card, just in case.
For my tabs, I listed the following categories:
Ear, Nose & Throat (ENT)
In the General section I keep the appointment information from visits to the pediatrician. Our pediatrician’s office has an online portal where I can go and print off the notes from the appointment, such as vaccinations given, tests administered, follow-ups, etc. It is a great way to refer back to what was discussed without trying to remember everything a month later. Also, items like vaccination records and general health information are put here for easy reference.
Hearing issues are common with Down syndrome so audiology checkups will happen. I have copies of her test results from her newborn hearing screening, appointment notes (Children’s Hospital has the same online portal as the pediatrician), test results, and any other information that is pertinent.
When statistics show that a baby with Down syndrome has a 50% chance of having a heart issue, this section becomes standard for many. With Mary having a minor ASD (small hole in the upper section of her heart), it became necessary for us. I keep copies of the cardiology tests in this section and the appointment printouts.
Ear, Nose & Throat (ENT)
We recently received a recommendation to see an Ear, Nose & Throat doctor that specializes in children with Down syndrome. Any information we receive from those visits will be here. They work with the audiology team so I think there will be some repeat information, but I’m ok with that.
We saw the ophthalmology department at Children’s Hospital early due to my concern of her being cross eyed so often. Luckily, she was fine and we were told to follow up in a year. Vision issues are also a common health issue to watch for with Down syndrome. Since Bryan and I both wear glasses, we have a feeling she will as well.
We were recently referred to physical therapy for Mary to help with some of her skills that are lagging. The information we receive from this team will be put in this section.
Every other week, our coach from Help Me Grow (early intervention in our state) visits and works with us on new exercises for Mary. Each visit, she writes out what we worked on, what we need to work on, and the plan going forward. I keep them in this section, with the most recent visit at the top of the stack.
I recently added this tab to my binder. We have received a lot of information lately regarding financial aid and assistance. This is important because a Down syndrome diagnosis, or any major medical diagnosis, can get expensive. Any aid or assistance is a wonderful thing. I am keeping the paperwork we receive here so I can stop searching for it or wondering where I put it.
Some other tab categories that may be useful:
Therapy (of any type)
A binder for organizing files is a useful tool. As you assemble your binder, you may find that you need more tabs than me, or not as many. You may want different categories all together or change what you keep in the categories. Or you may find a different system altogether that works better for you and your family. The important thing is to find a system and setup that works for YOU. Something that helps you finds your documents easier and becomes one less thing to stress about.