One Child's Story with Horizontal Gaze Palsy with Progressive Scoliosis
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We made it!

4/14/2015

2 Comments

 
Picture
More specifically, I made it. Last April when we were in Cincinnati for Makenna's checkup, her doctor threw me a curve ball. She looked great:) She could stop wearing the brace. And we'll see you back in one year.

Wait, what?

One year? 12 months? 365 days?????

When we first started treatment, she was seen every 12 weeks. Dr. Sturm's skillful hands manipulated her spine with each beautiful cast she wore. We saw him 5 times in that first year. Milestones in scoliosis are marked in degrees of curve, transition to brace, amount of time each day spent in brace ~ all along gradually adding time between visits... every 12 weeks...every 4 months.... every 6 months.... and now one a year.

After reminding me to breath, he repeated himself - very slowly; so I would fully understand. He would see her back in one year.

As we scheduled the follow up for (gulp) one year.... I had one comforting feeling. If I noticed any change or had any concerns, I would just call and schedule an appointment earlier:) But I knew  it was important to really try to embrace this milestone and TRUST. And I was determined to keep the appointment as scheduled.

Well, here we are. One year later. No appointment changes:) In just two weeks, we return to Cincinnati for her follow up. This is the longest time she has gone without a spinal x-ray since she was 2 1/2. She just turned 8. Side note.... Cincinnati Children's Hospital has a low dose (radiation) x-ray machine.

My anticipation of what her new x-rays will show has begun as I carefully and methodically examine her spine in all different positions and wonder what her little spine actually looks like now...I try not to over think it too much. It's in God's hands. I pray she has maintained and not regressed and that we can continue with just yearly follow ups!


2 Comments
Emma peers
6/23/2015 02:48:05 am

Hi, my son is now the third to be diagnosed in Great Britain, now facing this long road ahead, having his first x ray on spine on July 8 and then treatment should begin, he is 10 months old, would like to hear from others with the same, the few of you out there x

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Mia Feltis
10/25/2018 08:29:41 pm

My son is turning 14 tomorrow and has lived with horizontal gaze scoliosis. It’s been a 1 1/2 since he had his vertebral tethering at Shriners hospital in Philadelphia. We have never heard of anyone else with this syndrome. I have been trying to find a group on Facebook to hear of similar stories and why we have to look in the future for.

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