Tuesday, August 12, 2014

Don't Be Surprised: A Notebook Helps with Organization

Do you have a scoliosis notebook?  You really should.

I'm going to share with you how I organize ours, but first, a cautionary tale.

I started this notebook while The Dude was getting his casts--there was just so much information to keep track of, and we were learning as we went.  Plus, when we had questions or needed to ask our out-of-town casting doctor whether The Dude's cast was really getting too small earlier than expected, we had to email photos.  It seemed a good idea to keep all those photos in one place, too.  I have X-rays, measurements, and provider contact information in the notebook, too, along with dates of the various appointments, brace types, and other pertinent notes.  So organized!  (If I do say so, myself.)

A couple of years ago, life took some challenging twists.  I was physically ill for a year.  Also, we bought/sold/moved house.  That was hard.  Did you know we homeschool?  And The Dude's Daddy travels often for work?  Somewhere in all that, the old laptop computer died a sickening and sudden death, from which no data could be resurrected.

I didn't give up the notebook, but I did get severely off track.  I made handwritten notes rather than typing things in an orderly fashion.  I took photos but never printed them.  I didn't record the dates of all the brace adjustments.

But it was ok, since we were in a holding pattern with The Dude's scoliosis treatment.  Nothing was really changing--the X-rays would show a few degrees improvement, then the next visit a few degrees unimprovement; he would outgrow one brace, and get a new one; and so it went.  Until it didn't.

Suddenly it became clear that we were in a progressive trend again, and we found ourselves seeking another professional opinion, and there I was with my seriously outdated notebook.  I couldn't make sense of my notes (who can remember things from 9, 12, 20 months ago?--that's why we take notes, after all!), and I didn't have any photos of The Dude in his third brace at all (we'd moved on to the fourth already), and no prints of out-of-brace photos in over a year.  Ok, over a year and a half.  Worse, I had not printed a few x-rays from the time when I was so ill, and I found that the new computer could not open the files to print without some new image software installed.  I don't have new image software yet.  (I was getting an extra copy of the CD for the orthotist, and he always prints and measures for his own use, so I wasn't completely useless.  Just slack.)  Need I tell you that I stayed up late a few nights just getting ready for the appointment with the new specialist?


But it was worth it.  The specialist quickly got a clear picture of The Dude's atypical scoliosis, and came to a quick understanding of his treatment thus far, and spent his time on thoughtful consideration of the case rather than on gathering the history.

So, heed ye my cautionary tale of woe, and don't get behind on keeping your records!

(An aside: you are getting all your child's x-rays on CD, right?  This is important.  Do not rely solely upon print-outs.  When you take your child to a new specialist, they will need to have the CD so they can enlarge, adjust contrast, measure curves, etc.  Also, print-outs are subject to the vagaries of existence as a piece of paper, and having your own electronic file is your insurance.  Some offices charge a small fee for providing you with a CD, but it is well worth it.)

Next up, a post devoted to the template for our Scoliosis Notebook.  Check back soon.

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