Recipe for a Scoliosis Notebook

The Scoliosis Notebook can be as simple or as fancy as you please--what matters is the information you've got at a glance.

I'm a very simple kind of organizer, so my notebook is not fancy at all.  Feel free to create one just like it, or to design something artistic, whatever works for you.

Ingredients:

• Three-ring binder -- 1" is good to start with.  It should last some years.  You may never need a larger one, but if you do, it's simple to upgrade.
• Page dividers for 4 or 5 sections, labeled:
• Providers
• Measurements
• X-rays
• Photos
• Physical Therapy (or Bodywork) if your child does either of these
• Pocket to hold recent CDs of x-rays -- this can be the pocket on the flap of the binder or an insert that goes in the binder.  After eight years (so far) of scoliosis, we have a stack of CDs several inches tall.  I don't carry them all in the notebook, only the most recent couple of years' worth.  
• Sheet protectors for photo pages -- acid-free is probably advisable
• 8.5 x 11" cardstock for photo pages
• Double-sided tape for photo pages (I use stuff made for scrapbooking--it's repositionable and easy to apply.)
• Printer paper and ink

Do:

1.  Label your binder.  Mine is called "Scoliosis Notebook."  (Told you it was simple.)

2.  Create a sheet with contact information for all your scoliosis care providers.  Put this sheet behind the divider labeled "Providers."  Include:

• Your child's pediatrician
• All orthopedic surgeons who have seen your child
• All orthotists who have made a brace for your child
• All physical therapists and/or bodywork specialists
• Any provider whose medical records you may one day require, or whose opinion you may need to seek, or whose treatment has been part of your child's scoliosis journey

3.  Create a file on your computer to keep track of all your child's scoliosis measurements and treatment appointments with outcomes.  For ongoing physical therapy or bodywork, you can simply enter a starting (and ending) note, with any pertinent details you wish to include, but do keep this brief--this document is an At-A-Glance type of document.  If you want to keep extensive notes, make a separate file for that.  Here are a couple of examples (totally fictional):

January 23, 2005
X-rays, supine
Dr Scoli Expert, Children's Hospital of Your Town
After Cast #4
Levocurvature T6-T12: 30*
Dextrocurvature T13-T20: 20*
In Cast #5
Levocurvature T6-T12: 15*
Dextrocurvature T13-T20: 8*

February 12, 2007
Feldenkrais bodywork
Began monthly sessions of 1 hour private lessons
Ms. Goodkind, Your Town

June 8, 2007
X-Ray, standing, out of brace 24 hours
Dr Scoli Expert, Children's Hospital of Your Town
Levocurvature T6-T12: 35*
Dextrocurvature T13-T20: 28*
Height: 48"
Weight: 46.5 lb

4.  Behind the X-Rays divider, place print-outs of all the x-rays of your child's scoliosis in chronological order.  You may choose to use a three-hole punch on these print-outs, or place them in sheet protectors if you want to get fancy.  I prefer to leave these unmarked so the picture of the curves is clearly visible.  I label these on the bottom, but you could easily put your labels on the top if you prefer:

• Bottom left: description, such as, "Supine, in cast #5," "Supine, after cast #5," "Standing, out of brace 24 hours," or "Standing, in 3rd brace"
• Bottom right: date of x-ray

5.  Behind the Photos divider, you will place sheet protectors with 8.5 x 11" card stock on which you've affixed photos of your child's shirtless torso, your child in casts, your child in braces.  You may also wish to include photos of the casts and braces (unoccupied) from several angles if you like. Include the date the photos were taken, and place them in chronological order.

Shirtless torso poses should include:

• Standing, front view
• Standing, rear view
• Standing, side views (both)
• Bending over in dive position with any rib hump/abnormality clearly visible (this may be from behind, from behind/above, side view, or several of these--use your judgment)

In-cast or in-brace poses should include:

• Standing, front view
• Standing, rear view
• Standing, side views (both)

Take photos of your child in casts and braces when they are new and when they are about outgrown.  Take shirtless torso photos before every exam; every couple of months when your child is an infant, stretching out to about every six months by about the age of five or six.  Be sure to take photos of your baby as soon as you get him/her cleaned up after a cast comes off, too!  (I'm sure I don't really need to tell you to do that!)

6.  Behind the Physical Therapy/Bodywork divider(s), keep notes about any appointments and exercises to do at home.  It's a good idea to use headers like those in your at-a-glance measurements documents so you can keep track of the progress.

That's it!  You're prepared for anything now.  Well, anything a scoliosis specialist might need to know, anyway.  I hope this helps you!

Do you have ideas to share or things I should add?  Please tell me in the comments.  I'd love to get your feedback!