Tuesday, July 3, 2012

A day of Celebration and the beginning of a long journey...Scoliosis.

Scoliosis...curvature of the spine and curve ball in life.

On this very hot but beautiful day we celebrate the 11th birthday of my daughter Sydney who has waited for what "seems like ages" to turn 11.  One step closer to 13.  And yet on this day that we celebrate her life, we spent almost half the day in the Orthotics office so my oldest daughter could get fitted with her brace and begin her 3-5 year journey of 21-22 hours a day of wearing a TLSO brace.  To make a long story short, earlier this year I noticed her alignment seemed "off" when she got out the shower and when I took a really good look at her, I knew she had Scoliosis.  We went to the her pediatrician for confirmation and then to Children's Medical Center in Washington, D.C. for x-rays and testing.  She had two curves, 35 degrees and 23 degrees. No surgery but bracing was needed to try and prevent further progression.  Two months later we had our first visit to the Orthotist for measurements and an examination to make the brace and then 3 weeks later, today, we picked up the brace.

 Her Orthotist (is that right?) is great!  He is a very kind and godly man who has been in the business for over 25 years.  He loves what he does, it's his ministry, and he truly cares about the people he encounters.  He is patient and very knowledgeable about the different types of braces available from all around the world and he allows you to be hands on all along the way.  It's far too much for me to go back to the first appointment to explain the entire process but maybe one day I will have the time and energy to chronicle that.  For now let me just say that after some tears, some anxiety and fear my daughter is now officially in a brace.  She took it quite well and met another girl today her same age who traveled from N.C. to Virginia after her mom did research on the TLSO and searched far and wide for someone who would help her because she felt this was the best option.  I promise to share more but my mind is kind of all over the place right now.  Questions are welcome.  Here are some pictures from our visit today.

After several weeks of waiting, this is it!  This is prior to the adjustments.  She took a picture with her new "friend" who had just gotten hers as well.

This is after all the adjustments.  It was trimmed, holes were cut in it and some padding added under the arm.  This brace pushes back the protruding ribcage, brings the other ribcage forward and also aligns the spine.  Most braces just align the spine.

She got to help crank the handle that was trimming off some of the excess. He would have her put it on several time so that he could make it more comfortable and to fit properly of course.

Her little sister, the birthday girl, helping out while so lovingly spending time here on her special day for her sister's sake.

Smoothing the edges.

Onlookers! The equipment in this place was phenomenal.

This is her trying her best to stand "straight" and she has to practice keeping this position when not in the brace.

Using a blow torch to soften the brace so he could cut a hole in it.

Cutting another hole!

Trying it on, AGAIN!!

Little Sister trying on a brace used in France.  Yes, they really do use this in 2012. It's very heavy.

She was learning how to keep her schedule to show him in a few weeks and also got to look through profiles of other patients to contact for support and filled one out herself.  She has joined a local support group and is looking forward to a swim party this month.

Final results, again.  She will slowly work up to 21 hours over the next two weeks but will wear it through the night starting at 9pm until she wakes up.  She only had to wear it 2 hours today during the day and tomorrow she moves up to 3 and so on and so on.  I'm sure I will be giving her lots of massages.  Pray for my little sweetie. Thanks!


  1. I am praying, Alexandra! May the Lord nuture your bones and muscles with his strength and generosity.
    Sara, CC Kens

  2. She looks great! Can't believe how young she looked in that picture.


  3. Thank you so much for posting your daughter's story. My daughter was recently diagnosed with scoliosis and is having a hard time adjusting to life in the brace. I'm hoping stories like your daughters will let her know she's not alone. :-)

    1. Casey you're welcome and if you have any questions, I would love to answer them. I remember having so many questions and having such a hard time finding answers. Also, check to see if there is a Curvy Girls Group that meets in your area. You can also find the group on facebook. The group is a wealth of information. You've inspired me to post an update. I will try to get it done by the end of the week. If you subscribe by email, it should show up in your email box. Just so you know, after diligently wearing the brace, she is now down to a 15 degree curve out of brace. She feels so much better. She still wears it now but only at night.