Happy scoliosis awareness month!
Scoliosis made its presence known in our family 5 months ago in January. Through a series of events, (that I can now look back on and see God weaving specific moments together to make us aware), we took Ace into his doctor for a potential scoliosis checkup. They immediately ordered x-rays, which we were able to take that same day on a Friday afternoon. Monday morning, as Justin and I were on vacation in Nashville, I received a phone call that we needed to schedule an appointment to speak with the doctor about his results. At that point I already knew, but we confirmed over the phone that Ace does indeed have scoliosis.
I frantically took notes, taking in all the info, learning that scoliosis is measured in degrees of curvature. Anything over a 10 degree curve is considered scoliosis. 10-25 degrees is Mild, 25-40 degrees is Moderate, and over 40 degrees is Severe. We were told Ace has 2 curves: 1 being Moderate in the lumbar spine at 32 degrees, and the other in the thoracic spine being Severe at 42 degrees. I was told they would be ordering a TLSO brace, referring to physical therapy, and sending a URGENT/STAT referral to Pediatric Orthopedic Surgeon at Valley Children's Hospital. With my mind whirling, I was scared. My son was broken. I even asked if he was still able to play tennis with a brace. I spent so much time on my breaks and lunches making phone calls to move referrals along, and hurry things up. I joined Facebook parent support groups where I learned WAY TOO MUCH. It helped to have knowledge, but also drove my fear.
We finally got the call for our STAT Ortho appointment..... 3.5 MONTHS OUT. I was devastated. I tried everything to move that appointment up sooner, and called multiple times to check for cancellations... each time, I was met with the same answer.... that is the soonest we have. We waited. I researched. I was preparing for our appointment with the idea that the progression would be worse and we would be told Ace would be recommended for extensive spinal fusion surgery. While there are many factors involved, basically the range to explore surgery as a option begins at curves 45-50 degrees.... and Ace was growing still during these months. I saw it as he passed me in height! I was scared.
In the waiting, we took time to quietly come to terms with what was happening. Not many people knew, not only at my request, but also Aces. In the waiting something amazing happened for me... I was able to relax, I was able to trust that God has this. I realized I was oh so wrong and my son was never broken. I got to witness Ace work hard to earn the #1 spot on his Varsity tennis team - AND fight to keep his spot. I saw him run and move his body around the tennis court in remarkable ways. I saw Ace work so hard in physical therapy doing everything asked of him with appointment time to spare. He was NEVER BROKEN.
Our appointment came in May, and I went in with my notebook, my many questions if surgery was on the table, and wondering what we would hear. They took new x-rays that day, and I was shocked to find his curves had basically stayed close to the same. Thoracic - 43 degrees, Lumbar - 31 degrees. After reviewing things and doing physical exam, the surgeon said he does NOT recommend surgery for Ace yet... but that he does have a severe curve, and is very close to it. I asked just a fraction of my questions (because most were surgery related) and the doctor asked if I was also a physician or NP, which I had to laugh at.... No, this is just my precious son, and I had months to learn.
One of the things I did ask, is if he could tell me his Sanders score. A sanders score, is where they view the ossification of bones in the hands through x-ray to see how much growth an individual has left. (Which is why his hands are up in the x-ray.) The scores are 1-8, 8 being fully grown. He said he estimated Ace to be at a early 7, so growth is slowing, and in turn the spine will slow down in curvature. This being said, he said we could get Ace a TLSO custom brace made, IF he thinks he can wear it for at least 16 hours a day... but that due to his slowing growth, he doesn't NEED it. The decision was left up to us, and since I have helped many students with their braces while working in special education, I know how uncomfortable they are, and I don't want Ace to have to do that if he doesn't want to.
Ultimately, we left with more physical therapy orders, and a recheck of progression in December. While spinal fusion may still be in our future, it is not at least for 6 months. Praise God! Continued prayers would be appreciated!!
This story and images are being shared with Ace's approval, and he wants others to be made aware of scoliosis. One of the first things he told me after his diagnosis, was that maybe we should have his sisters checked, because it can be genetic. Ace is the best.
Bent, But Not Broken.
