Saturday, December 18, 2010

File Under O: Organization

From time to time, I get questions about how we keep everything organized for Dean. As soon as he was born and it was clear that we were in for a barrage of appointments, specialists, surgeries, you name it, multiple people advised me to get a binder. I didn't need to be told twice. This wonderful red binder is the mainstay of my organizational plan for everything Dean needs. I bring it to most appointments and update it as much as I can.

Contents include: 
  • List of Dean's doctors, therapists, mail-order pharmacies, insurance reps, you name it. I can't tell you how many times this has come in handy especially to get members of Dean's team talking to each other. 
  • Records of medications and supplements: when started, when stopped, dosages and frequency. 
  • Notes from every appointment Dean has had since birth (seriously). It's been really nice to write down what the docs are saying as or right after they say it so that it's not a big blur afterwards.
  • A copy of Dean's DNA analysis (people often request the actual results saying that he has PWS, as if it's a question!) 
  • A copy of Dean's evaluations from specialists, etc. 
  • Resources from the PWSA(USA) about medical issues specific to PWS. These are helpful to hand out when we are with a new doc or undergoing a certain procedure so they know about potential issues that could come up or how to prevent these issues in PWS.
  • Record of Dean's height and weight each month. 
  • Record of surgeries and hospitalizations, as well as discharge instructions from each occasion. 
I think that's "it." :) I would definitely encourage others to make a similar binder or to tell others to do so. I also have other files on my computer for recommendations for supplements and treatments, lists of PWS-friendly foods and recipes, copies of letters/appeals written to insurance companies,  email correspondence with docs and others related to PWS, a record of medical expenses for tax purposes (thanks, Sabra!) and a lot more. 

It seems like a lot, but it makes things a lot easier for me! Hoping that I can keep this up as Dean grows... or heck, maybe things will get easier and I won't have to keep track as much... well, probably not, but a girl can dream! 

And just because, here are some pics reading with the boys. As you know, Dean is obsessed with books. Cole is, too, and lately he's been wanting to "read" more of them on his own. Yesterday, he "read" (he had the text basically memorized) Dean's favorite Peekaboo book that I mentioned recently. He was so proud and Dean loved it; a win-win. My heart beamed. 

1 comment:

Kera said...

I like to think of myself as an organization freak. You should see my spices. But I never thought to do this with Delilah's medical information. Seriously gonna have to get on this one! Thanks for the inspiration!