March 28, 2009


With all the phone calls, appointments and paperwork I do, being the mom of a special needs child is sometimes more like being their executive assistant.

Yesterday, we received Bertrand's registration packet for Shriners in the mail. I was able to schedule Bertrand's evaluation visit for April 27th at 7:30AM. A month away, it was their first available appointment. (Now I have to move his speech therapy.) Not bad for a supposed 2 month waiting list. I've already gathered and filled out all the paperwork for Shriners.

It's become incredibly important to stay on top of things and stay organized with Bertrand. As registration packets come in, I fill out what I can and pool the necessary documents. Most of Bertrand's documents (insurance card, birth certificate, medical records, etc.) have been scanned in and saved to PDF. I can then print out for or email copies to whoever needs them.

I'll be scanning Bertrand's therapy documents soon. I just go to one of those big automatic scanners and run everything on auto feed through. The resulting document is emailed to me and I break it into smaller documents to save in Bertrand's file. My typical naming scheme is year-month-day-DocumentType.pdf (e.g. 2009-03-28-IntakeRecord(Neurological).pdf).

We also ask for and get CD copies of Bertrand's medical imaging the day of each procedure. All this has been incredibly helpful in coordinating interinstitutional efforts. When a doctor wants to know whats been done, we can just email it, point to a secure webpage or burn copies to CDs and overnight. Whatever works for the individual doctor.

I fill out most of Bertrand's paperwork on the computer, so the doctors have an extremely legible copy, and I have a copy saved on my laptop. (I am trying to figure out ways to put it all on my iPhone too--just in case.) I carry hard copies of everything to appointments in Bertrand's Baby Brief Case. In it I have the following files: notepad, question list, receipts, medical imaging CDs, research publications, medical records, identification.

(Funny enough, I'd bought the baby brief case before Bertrand was born and it was overkill. Way too much for a normal baby. Once his medical issues became evident, the brief case was resurrected. It'd be easy to make your own brief case with a standard accordion file folder. My case fits everything well and makes me feel like I have at least something under control. )

Also before Bertrand was born, I had toyed with Google Health going through one of their approved providers. We may still use the upload it yourself version of Google Health, but the providers were EXPENSIVE! Bertrand would've been close to $500 to set up. Those providers are geared not to individuals but to companies that want to provide the service to employees.

With our impending trip to Duke University, and despite TSA regulation changes, I've been trying to simplify travel with Bertrand. We'll see how this works, but I am preordering everything (diapers, wipes, formula, toiletries, food) through, an Amazon affiliate. The shipping on orders over $49 is free, sales tax isn't charged, and has a low price guarantee. Our package *should* be waiting for us in North Carolina when we get there...


  1. I'm impressed by how much you're going to bat for the little tyke. He couldn't have a better advocate!

  2. You are the Best Executive Assistant anyone can wish for!!!!!!
    Please be conciuos that you have to Eat! If not, you can get sick and then, Bertrand will need to take care of you.

    Titi Lili