www.curejm.com

[Chloe's Mom]

We are new at this and I am trying to get my binder organized and figure out what will work best. What do you do? How do you keep everything organized?

Also - what copies do I need to keep from the visits? I don't think I need everything from her stay in the hospital. Please help! Thanks!
_________________
Danielle Britten
mom to Chloe, age 6
dx 1/11/2010 at 3 yrs, 11 months

http://www.caringbridge.org/visit/chloebritten

[Annie M]

Have you tried searching for this topic under "Support"?

I know it has been discussed before and I have even posted at length before. I think I even listed what the the section titles of my binder were.

Sorry I am unable to post something lengthy now, but I would suggest to search under "Support".

Gotta run,
Annie

[seedison]

Danielle,

On the homepage click on the FSN or Family Support Network link. You'll lots of tips for the Newly Diagnosed as well as The Top Ten Tips from parents. How you organize your binder is sort of up to you but we've given you ideas about sections and the Welcome Kit I gave you has ideas too.

I do recommend keeping copies of almost everything. You just never know when something will come in handy.

You can email me privately and I can go over things with you if you'd like.


best,

Suzanne
_________________
Family Support Director
Advisory Board

Flora's mom, DX 1/07 @ age 6

[JacquelyneD]

Hi all,
I'm going to move this thread to the support section, rather than News and General. Thanks, Suzanne, the Family Support Network Link has volumes of information. If you haven't browsed this link before, take a look. It's full of great information.
Jacque
Cure JM Board
_________________
Jacque, Mom of Eric, 24, dx 1998 age 11, flare 10/05 - 9/2011 http://www.firstgiving.com/fundraiser/jdenuyl/soaring

[jeanette]

We outgrew our 3 ring binder in the first month or so. We were working between 3 institutions that did not quickly share data.

Our solution was to keep everything electronically at Medic Alert. They have a membership called "Medic Alert Gold." Its about $10/mo and includes a toll-free personal private e-fax and a medic bracelet. You upload documents to your password protected site. Then, if you need something you can log in and print it off.

Personally, I wish I'd had it from the beginning because there were some large uploads once I got it.

It has been invaluable when we've arrived at one institution and they can't find info they were supposed to have received from elsewhere! We just ask to use a computer with a browser, access what we need, print it and hand it to the provider right there. The only thing you will need to keep physically with you are CD or DVD of radiology films. Everything else can be stored on the site.

Hope this helps!
Jeanette
_________________
Jeanette
Grace (9) , JDMS dx'd 8/2007
Richie (7) Tetralogy of Fallot repaired 10/2005; Residual pulmonary stenosis; leucopenic