Friday, January 23, 2015

Orthotic-Free Follow Up #1

It's pretty much a rule that I become rather introspective whenever we are at Shriner's for Jackson's scoliosis.  On our most recent trip (this week), that was particularly true.  I look around the lobby and the hallways, and (just being honest) I think about how unfair life is that children are born without legs or bound to a wheelchair for their entire lives.  I also tap into the deepest well of thankfulness within me.  Being completely candid with you, it's easy to get complacent.  It's easy to take healing for granted as time passes beyond the "good news."  Honestly, our journey with Progressive Infantile Scoliosis was grueling and long - but it had a really (so far) happy ending.  It had a rare ending.  Jackson is in the stark minority of 100% cured babies.  I know that we are eternally blessed by God that Jackson's spine is straight and that he has been orthotic-free since September 2014.  Many, many of our scoliosis friends are not in this fortunate place, and my heart aches for them when I am reminded so plainly of this reality at Shriner's. 

On Wednesday of this week, Jackson has his first follow-up since going brace-free in September.  Gone are my days of intense anxiety with physical symptoms (casting days at Shriner's Philly).  Gone are my days of weepy worry (casting days at Shriner's Greenville).  Gone are my days of quick-and-easy brace checks and adjustments.  We are in the season of maintenance.  This is an important season, and one that could always become a game changer.  Jackson's doctor is supremely (but never 100%) confident that Jackson's scoliosis is unlikely to return, but that will never (until age 21) be certain.  This appointment became a reality check for Justin and I.  It was a reminder that nobody's health is guaranteed and an overflowing of new gratefulness and praise.  It was further proof in the power of prayer.

Shriner's Greenville has a new x-ray machine that uses super low levels of radiation.  The caveat is that the child must remain PERFECTLY (almost impossibly) still for about 5-7 seconds.  Before this appointment, Jackson has been afraid to enter this capsule-like machine.  In a moment of bravery (and hoping for a trip to ToysRUs), he chose to give it a try.

The x-ray image from this machine is composed of tons of tiny crosssection images that populate on a screen.  As I was standing behind the radiation barrier and watching this image appear, I could hear Jackson's nurse saying "don't wiggle buddy, don't wiggle."  My heart sank when I saw the x-ray appear on the screen with (just guessing) about a 12-15 degree scoliotic curve.  However, Jackson's arms/shoulders were leaning in the film as well.  I asked the nurse if we could redo Jackson's x-ray in the traditional machine that he is used to (instantaneous image capture).  She agreed to do this because of his motion during the first x-ray.

And praise the Lord, this x-ray looked 1,000,000 times better!  Still, I was on pins and needles waiting to see Dr. Pete, not knowing how he would read these results.  We sat and waited for awhile, the whole time I found myself repeating scripture in my head.  For those of you who were praying for us from afar, you are so very much appreciated!  I truly, truly felt those prayers during this visit.  Listing to a mother and father sob two rooms down from us, I was also reminded of how quickly life can change.  We have to choose joy. 

My eyes filled with tears when Dr. Pete entered our room and without hesitation said "He looks perfect, just as I expected!"  When I questioned him about the "bad" x-ray, he said the technicians didn't even send it through the computer system (probably due to poor quality from Jackson moving).    Dr. Pete reassured us that he expects Jackson to continue to grow straight because (although not guaranteed) the odds are in his favor.  Again, he also referred to prayer which I love.  Dr. Pete is an incredible physician!  He asked us to return in 4 months for another follow-up.

Truth: I am still a little uneasy.  My head wants to 100% believe that the "bad" x-ray as a result of only Jackson's movement.  Facts tell me that the second x-ray looked perfect.  Reality is that Jackson's skilled orthopedic surgeon read the x-ray as ZERO degrees.  But, I'm a mom.  And, I'm a worrier.  I am glad that we return to Shriner's in 4 months for a follow-up x-ray.  My heart has trouble seeing a 12-15 degree curve - even momentarily, and even if it was an incorrect representation.  However, I still choose joy. 

Joy came easy in Greenville South Carolina's 70 degree January!  On a day that could have turned out SO differently, my family and I were able to enjoy the downtown Riverwalk together and to soak up the beautiful, warm sunshine.

And that evening we even enjoyed a nice "manager's reception" at our hotel.  Note:  the kids are drinking lemonade!

It was a much needed evening of relaxation.

We ended our trip (on the drive home) with a stop by Justin's Mammaw's house to celebrate a late Christmas with family.  And most importantly, to celebrate God's continual healing of Jackson's spine.


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