No Chaos No Order

October 14, 2012

A whole lotta not much!

Filed under: health, heart, home — fairyguts @ 6:26 am

This week, after last week’s overambitiousness, I had set out some new guidelines, one of which was to set three goals each week.  Since I had an appointment this week, I decided my other goals would be:
1) Robin’s paperwork goal by setting up an electronic personal health record.
2) Create a summary packet (sheet, if I can fit it all!) for babysitters and non-medical travel.

I feel like I get to count appointments as a goal because they end up taking about two days of effort. The day before I make sure any of the surveys or data collection sheets each specialist sends us for their appointment is filled out, any cloths or items I want to take are cleaned, and the car is gassed up and ready to go. The morning before the appointment is occupied with adjusting Robin’s feeding and my pumping schedules while organizing and packing all the medicines, feeding, and pumping paraphernalia that we’ll need for the day (plus one more, just in case). Then the travel and appointment itself is an event. Robin doesn’t like getting poked and prodded, so we try to snuggle and nap and eat between specialists or while waiting for lab or imaging results. Finally, we go home, but that night and the next morning are harder for Robin, so he needs more comforting and attention. It can be overwhelming sometimes.

Robin got a flu shot on Monday, so he has been out of sorts all week and it has taken me till today to pick out how I want to manage electronic personal health records (PHR) for my family. I picked Microsoft HealthVault since it tracks a variety of information as well as allowing image and document uploads, it’s free, and it interacts well with a free android application (iTriage). I also found that it is one of the bigger Personal Health Records systems out there and it works with many health care systems. Instead of typing all of Robin’s information in to it, I’m contacting the hospitals to see if they can send me his information electronically. And, while I’m at it, I’m putting all my information in, too. One more notebook of paper off my shelf and out of my hair!

Last time I mentioned I’d explain how I organized Robin’s “Summary” notebook. This book will help me communicate with all of his specialists so everyone is on the same page.
1) Pocket page. The front pocket holds the surveys and data sheets for upcoming appointments. The back pocket holds “Action Items” – a new report that needs to go into his PHR, an appointment to be put in my calendar, medication copay repayment program application, etc. Right after the pocket, but before the first tab is choking and CPR information.



2) “Vital Info” tab – care and equipment provider contacts, emergency contacts, Robin’s information (birth date, actual and corrected ages, current length and weight), and old daily care schedules (current one is posted in kitchen).
3) “Medication” tab – current medications list with dosages, I also like to keep the medicine information sheets here so I can look at possible side effects if I need to.
4) ” Tests” tab – a brief history of procedures, tests, and imaging. With the electronic PHR, this section should become something I’ll print out.
5) “Equipment” tab – information on the equipment we’re using (instructions, gas tank duration chart, etc).
6) “IFSP” tab – Education Service District’s initial evaluation and eligibility statement, IFSP, and progress notes.

So, I am counting Robin’s book as done, but am still working on his PHR. My final goal for this week didn’t get done (summary sheet) , but I did get to work on a fun project! These are height charts and after years of making them for every baby shower I’ve been invited to, one is for my very own baby!

To recap the week: one goal completed with two blog entries plus a bonus craft… not the plan, but not too bad. This week we have a home visit, so I’m going to work on:
1) Robin’s summary sheet.
2) Organize my personal data (chapter 5 from “Organize Now” – using the PHR means I’m halfway done!)
3) Robin’s hospital memory book (since it’s taking up half of my desk). – this one may be too ambitious, but it needs to happen.


1 Comment »

  1. […] a previous post (A Whole Lotta Not Much), I mentioned briefly that I like to make height charts for baby shower gifts. When I first […]

    Pingback by Mailable Gift « No Chaos No Order — November 3, 2012 @ 7:00 am

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