I maintain a separate notebook/ binder for pertinent health information about Matthew. After Matthew was born, I had been looking for a good way to keep track of medical information, doctors visits, and routines, among many other things. I found 2 Special Care notebooks and merged them for my purpose by printing the pre-formatted pages that were applicable to us. It took less time than drafting my own forms. See Complete Care Notebook and Care Notebook at the Center for Children with Special Needs. Searching for "special needs binder" on Google will also locate other pre-made forms that are customizable.
The care notebook makes it easy for me to share health information with Matthew's doctors. In a way, this notebook is my letter of intent for Matthew since it contains:
- Emergency Information - Matthew's medical information, family information & medical insurance details.
- Health History - my pregnancy history, Matthew's birth history, family medical history, Matthew's diagnosis.
- Health Tracking - phone conversations and visits with doctors, immunization record, vaccine information, test results, hospitalizations and surgeries, medications, treatments, allergy record, behavior record, dental care record, growth tracking forms & charts.
- Expense Tracking - medical and therapy expense log.
- Care Team Contact List, with a plastic insert for business cards - primary care physician and specialists, pharmacies and medical suppliers, home care providers, child care providers, community resources.
- Education Plan - education record, a copy of the Individualized Family Service Plan (IFSP), other programs or classes.
- Daily Routines - information for care providers and school about habits, preferences, diet, behaviors, and anything else they should know about.
Developmental Journal for Babies and Children with Down Syndrome
I first came across the link to this journal on Down Syndrome New Mama. I downloaded the journal, printed every page and put it in a binder. I only started using this journal recently so I'll have to backtrack and record Matthew's achievements in the pre-developmental journal days. I have record of his milestones elsewhere, but it's not as detailed as this journal.
One thing I have learned about myself is that I have grown to like lists. Making a short list of Matthew's goals for different areas of development helps me stay focused and not feel too overwhelmed. I like this journal because it is very comprehensive and segregates the different aspects of development such as cognition & play, communication, social-emotional, motor & sensory, and self-help. It also has columns to record dates or general time frames when a skill is emerging, developing, and achieved, as well as a column for notes. The format allows me to see which areas need extra attention. Then I can make a short list of activities we can do for the week or until the next therapy session when I can raise my concerns and get more ideas.
Medical Records File
One folder is labeled "Matthew's Medical and Dental Records" and contains labwork results, information from doctor visits, and other medical records pertaining to Matthew. It is categorized:
- Cardiology - for echocardiogram reports.
- Dentist - for all dental reports, etc.
- ENT - for hearing test reports and any other paperwork from the ENT.
- Geneticist - for the letter from the genetic counselor who talked to us during the week Matthew was born. The letter summarized our meeting and confirms the Down syndrome diagnosis.
- Labwork - for bloodwork test reports.
- Nurses To Go - for records of all the home visits when Matthew was a few weeks old, needing bloodwork.
- Opthamologist - for eye exam reports, etc.
- Pediatrician - for well visit summaries printed by our pediatrician's office.
First Steps (Early Intervention) File
Another important folder is Matthew's First Steps (Early Intervention) folder. In it, I have dividers for IFSPs (Individualized Family Service Plans), invoices received, and statements of services received. This file has a 3-year life span as Matthew transitions out of Early Intervention when he turns 3.
Yearly Medical & Dental Invoices/ Receipts File
A separate folder also exists for Medical & Dental Invoices/ Receipts of the family accumulated during the year. This should make it easier to look up medical expenses for insurance-related purposes in addition to having a separate Health Insurance folder with our claim summaries.
With my current system, it is very easy for me to find health information about Matthew that I may need to share with doctors, future school nurses, and future caregivers. It should be easy to add new dividers or new folders if needed. This works right now but as with anything else, there's always room for improvement. Maybe one day, I'll have all of this on a computer.