The Girl with the Crooked Back


March 2013.

Graysen and I finally go in for a scoliosis assessment with a pediatric orthopedic surgeon in Knoxville.  Truthfully, I had grown quite apprehensive about what we would find out that day.  On the one hand, I thought he would most likely tell us that she did have what Peyton has, and that it would stop progressing when she had finished growing.  On the other hand, I could see the difference in how her back looked compared to Peyton's.  The difference was significant and seemed to be getting worse.  So I prayed about the appointment, the news we would get, and that Graysen would not be a candidate for any type of intervention.  The only problem with that, though, was that she was in pain.  So how would that be resolved?

To say that we were shocked by the news we got that day would be an understatement.  Graysen had a back X-ray when we got there and then we waited for the doctor.  I was expecting him to tell us that Graysen had about a 25 degree curve in her back and that we would keep an eye on the progression.

That is not what happened.

Here is where mother guilt could take me and drown me.  His first question was why she was 17 years old and he was seeing her for the first time.  Well, no one had ever referred us to have it assessed.  We knew it was there, but as you know, there were reasons why we hadn't addressed what we were seeing.  What I did know was that while we were trying to figure out why she was so sick in 2012 and we were focused on that aspect of her health, her crooked back had gotten significantly worse.  It was obvious.

Thirty-nine degrees.  He said, "Do you want to know what her curve is?  It's 39 degrees.  We do surgery at 40".  I was stunned.  Graysen was stunned.  I felt the tears welling up in my eyes and I fought them because I didn't want Graysen to be scared.  I was terrified.  I remember asking a lot of questions.  Questions about life with rods in your back, flexibility, can she do this and can she do that?, what about carrying a baby someday?  So many things flooded my mind.  He was kind and caring and patient as we tried to process all that we were being told.  A lot about our conversation that day is a blur to me, but in the end, he told us to come back in six months to have her curve re-measured.  We would see where she was at that point and talk about options.

We went home and started praying that her spine would stabilize, that her curve would not progress, and that she would not be a candidate for surgery.

              "Be joyful in hope, patient in affliction, faithful in prayer".    Romans 12:12

How it all began:

Just like all stories, this one starts out with more questions than answers.  How did you know Graysen had scoliosis?  When did you find out?  How "bad" is it?  Is she in pain?  Have you tried therapy?  Can't she just wear a brace?  Are you sure she needs surgery?  Will she wear a brace after her surgery?  Why are you going to Texas for her surgery?  How long will you be there?  How long is her recovery?  What will her restrictions be?  Will she be able to cheer?  Will she start college in the fall?

Lots of questions.  We asked them too.  The answers are, for the most part, the exact opposite of what we wanted them to be.  It has been a little over a year since our first visit for scoliosis assessment - the start of a journey we didn't want to take.  It's been a year of gathering the answers to the questions, a year of praying for clarity, direction, and peace.  It's been a year of watching our daughter live in pain (to answer that question).  It's been a year of hoping that Graysen wouldn't actually need surgery - that her spine would stabilize and her curvature would be one that she could live with.  A year of really seeking out the doctor and the surgery that is right for her and finding peace in that answer.  It's been a year of asking the questions, hearing the answers, accepting what we face, and making a plan.

And so here we are.  One month from today, Graysen will undergo spinal fusion surgery at Dell Children's Hospital in Austin, Texas.  Her surgeon is Dr. Matthew Geck of the Seton Spine and Scoliosis Center.  He specializes in scoliosis surgery and spinal deformities and has performed over 1500 spinal surgeries.
www.setonspineandscoliosis.com


Now to answer the questions.

We realized that Graysen's back started looking kinda crooked when she was a freshman in high school.  Her cheerleading skirt didn't fit her right.  I thought it was the skirt. It was shorter on one side than the other and was tight on one hip...I thought it had been made wrong or something.  Strangely enough, though, her other cheer skirt had the same issues.  I didn't think that much of it.  Our oldest daughter, Peyton, had been diagnosed with a very slight case of scoliosis - a 15% curve.  It stopped progressing when she stopped growing, so I thought that  Graysen had the same thing since I knew scoliosis was apparently genetic and could run in families.  I wasn't too concerned.

A year later, Graysen's crooked back started becoming more obvious, but really to just the people closest to her:  Us, (her family), a few of her friends and their moms, her cheerleading coach, and maybe a couple other people.  At that point, though, we still thought it would be the same situation as Peyton and it would stop progressing when she stopped growing, which hadn't happened yet.

Then, 2012 happened.  Graysen was sick all the time, practically every day.  Tim has celiac disease and all 3 kids are positive for the gene, but their symptoms are slight and they don't really follow a gluten-free diet like Tim does.  So now Graysen is dealing with terrible nausea, headaches, stomach pain on a regular basis.  She cries frequently because she feels so badly all the time.  She turns down offers to do things with her friends and she is exhausted easily.  We think it's the celiac disease and she changes to a completely gluten-free diet.  For four months Graysen does not eat gluten and yet, she continues to be sick all the time.  I take her to the doctor, but there aren't any answers.  Finally, we go to the beach in July and Graysen barely wants to leave her bed.  She is sick the whole week.  When we get back I take her to the doctor, and we ask for every test under the sun to be run on her.  One of which was a HIDA scan to test for gallbladder function.  Graysen's was functioning at 9%!  We had found the culprit, finally!  She had her gallbladder removed a week later.  It took a few weeks, but her constant sickness started disappearing and we were all so thankful and relieved.

But then she got sick again.  We couldn't believe it.  The fatigue, lethargy, the headaches, the nausea, the "all-over" feeling terrible returned.  She was so upset and so were we.  So, back to the doctor we go for more tests.

It was mono.  She had mono of all things.  This poor child could not catch a break and she was so tired of never feeling well.  It was a rough season for her.  On top of all that, her back was always hurting.  I bought her a heating pad and she used it all the time - when she slept, after she cheered, after she wore high heels, after she sat at school for hours, after sitting too long at church or at a program.  She rarely spent the night with friends because it hurt her back to sleep on couches or floors.  She stopped taking tumbling lessons.  But she kept flying, because she loved that and to her, it was worth the pain. She kept wearing high heels too, because she's a real girlie-girl:).  And she didn't complain - she just lived with it.

I could see it.  Other people could see it.  My dad was concerned and he would ask me from time to time what were we going to do about her back.  Other people asked me too.  My answer - I don't know.  I've just got to get her to the point of not being sick all the time before I can worry about her
back.



That time finally came.  After Christmas of her junior year in high school.  Graysen finally was well.  She didn't have headaches, or tummy aches, she wasn't tired all the time, or nauseas or crying.  She wanted to do stuff with her friends, and she was loving being able to cheer again without feeling terrible all the time.  She wasn't pale, and weak, and frail.  She was healthy again.

It was time to figure out what was going on with that crooked back of hers.


And that's what we did.  More answers to come...