• Lindsey Craig

DIY Minimal Medical Binder

Since Declan was one week old, I have been keeping some sort of documentation of his health and medical journey. The things that I keep track of have changed over time and depend on the areas that he struggles with or need extra monitoring and given closer attention to. In the beginning, the pages were long and it seemed like I was tracking EVERY single detail of Declan's life. Every pee, poop, feed, vomit, weight, appointment, medication and time administered, any and every unusual behavior he would have I would write down in the book I always had nearby.

Now, I only have a small binder.

A binder that I keep full of very important information about Declan that I want and need others to know, if for some reason I am not around to tell it to them myself. I wanted to keep it as minimal as possible, because an abundance of information is unnecessary as most medical professionals won't even have the time to REALLY read through it.

There are so many people who prepare and sell blank copies of medical binder packets, as well as a generous amount of facilities that will hand out pre made ones for their patients. This was the case for us twice, and both times while filling out the pre made sections, I found myself skipping over a lot, and having a ton of paperwork in a binder that I didn't even need.Skipping through page after page to get to something I needed was beyond frustrating especially in the middle of an appointment, so I decided to just make my own, and keep it simple.

The very front cover has Declan's name and a picture of him showing what he looks like at "baseline" on a happy/good day. I do this because I want people to know what Declan looks like when he is feeling well and what he SHOULD be acting like if by chance the situation arose where we need to compare bad health to good health while in the ER or at an appointment.

Throughout the binder, I list the basics.

Keeping it minimal while also giving all the critical information.

. . . . .



Main Diagnosis:

Other Need To Knows:

**List other diagnosis or health conditions.

Keep it as short as possible. Listing only the name and main symptoms.

Family Contact Information:

**Only list the people who live in the household or come in contact with the child daily such as aids/teachers/family.

Emergency Contact Information:

** Only list the person(s) who would be there or need to be called given the situation parents can not be present. List the phone number and address.

Primary Care Physician & all speciality Doctors including Dental Office:

** List every single Doctor that the child sees.

Include as much contact info as possible.

Phone, Fax, Email, Pager if possible.

Current Medications | Dosage | Administer Times:

**Extremely important to keep this as simple as possible while also making sure the names and dosages are clearly stated and understandable. List the name of the medication by the name it goes by on the package it comes in.

List the dosage amount as well as times it is taken.

Emergency Medications ( For us its for Seizure Activity)

**This is a very important page and its best to keep it marked with a RED tab so it stands out among the rest. The tab also helps turn to the page faster given the unfortunate circumstance its needed to read quickly about giving a rescue medication for the child. On this page, make sure to carefully explain HOW to give the rescue medications, and what to do after, such as calling 911 and watching the child's breathing. Going into detail on this page can be very useful for when your child is in the care of others when an emergency happens. Most people will not know what to do in a emergency situation with YOUR child. The more you explain and go into detail without overwhelming the page, the better off your child and the caretaker in the situation will be.

Feeding Schedule:

** This applies to the feeding machine for us, but will apply and be used when Declan is eventually switched to table food as well.

Monitoring and keeping a feeding schedule can help the child stay on routine, and ensure that they are getting everything they need throughout the day.

Growth Charts ( Weight & Height)

**This can be easily accessed and printed off from the Childs online hospital chart.

**For a child like Declan who has been labeled "Failure To Thrive" nearly all his life, keeping track of his growth and having his weight charts on hand have been extremely useful during feeding and Gastroenterology appointments.

Coy of Most Recent Shot Record:

**This can be easily accessed and printed off from the Childs online hospital chart.

Insurance Information:

** No matter how many times you've given it before, it always ends up being needed at the worst times. Having to deal with billing and insurance mumbo jumbo during an appointment, ER visit or hospital admission is beyond frustrating, having the card on hand to just hand over helps so much. Being prepared can go a long way in those stressful moments.

Unusual Behavior Log Book:

Okay, self explanatory I know.

** Now, this is where I get back to my old roots and write down anything that Declan does that is out of his ordinary. Everytime I write down something in this section I get flash backs of the days when times were so tough and Declan was so sick we needed to do this on the DAILY. Thankfully, we only have to do it occasionally now when something is "off" or we feel like the doctors would benefit from knowing something Declan did at a particular time.

For example, the day he went into NCSE (Non-Convulsive Status Epilepticus) I noticed that his head drops looked differently than normal throughout the day. Instead of dropping to the front like always does, he was dropping toward the back. This was very useful imformation not only for the Doctors and Neurologists, but the family as well. Now, I have it recorded in the binder that every time I see head drops to the BACK, to be extra alert and on the lookout for increased seizure activity.

. . . . .

Having a binder like this has helped our family in so many ways.

If you have a child with increased medical needs and you currently don't have a book because you feel overwhelmed and don't know how or where to start, then this blog is for you.

So minimal and yet SO useful.

I have used it countless times at appointments, and its even been very helpful when Iv had to step away from the house for errands leaving Declan in the care of his Grandmother. If something ever happened and she needed to get him to the hospital, she has the binder with her to help give doctors a better and correct description of Declans medical needs and daily life.

I spent an hour of my day putting together that binder thats been so useful on so many occasions.

For the sake of your little one, you can do it too!

Its the little things that can make such a BIG difference in the life of a special needs family.

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