Reflections, 1 year later, part 1

Today, I begin this post to reflect on the last year. June 7th, 2010 was the date Chandler had surgery for his Tethered Spinal Cord.

What Is a Tethered Spinal Cord?

A tethered spinal cord is a disorder in which a child’s spinal cord is pulled down and stuck, or fixed, to the spinal canal. The spinal cord normally floats free inside the spinal canal.
As a child grows, the spinal cord must be able to move freely inside the spinal canal. If the spinal cord is stuck, it will stretch like a rubber band as a child grows. This can permanently damage the spinal nerves. Seattle Children’s Hospital

 For Chandler, he had symptoms from the time he was 3-4 months old, he didn’t crawl until 12 1/2 months, or walk until he was 18 1/2 months. Once he was walking, he ran with an odd gait, nothing that would signal “get him to the dr,” he couldn’t walk up the stairs or down-he’d crawl. His balance was off. But again, his Dr. wasn’t worried and took the “wait and see” approach. Fine with me. I wasn’t worried.

When we started looking into additional speech therapy for his Childhood Apraxia of Speech, we decided to have him evaluated by a developmental pediatrician. Since our insurance wouldn’t cover speech unless it was due to an accident or birth defect (think Cleft Palate). So we were going to try and have it diagnosed as a Neurological Disorder, which it is!

After meeting with the Dev. Ped. she suggested having a Physical Therapy Evaluation, since he was behind in gross motor skills for an approximate 5 year old. Ok, great. We had the PT eval done at Legacy Emanuel Children’s Hospital, and we got a great PT (a friend of Grandma Brown’s). She found that Chandler was at least 2-3 years BEHIND where he should be. She also saw that he was very weak in his lower body, but great in his upper body. She suggested seeing Dr. Mark Shih, a Neurologist (who also is a friend of Grandma Brown). We saw Dr. Shih, and he noticed Chandler’s reflexes were hyper, meaning they bounced way too much. He was leaning when he bent over at the waist (one side lower than the other). With the PT eval, his constipation history, developmental delays, he ordered an MRI.

Chandler’s brain. Pretty cool!

The arrow points to the thickened part of the tether.

We did the MRI, where Chandler was sedated. He was a trooper! And very brave! After reading the MRI, Dr. Shih, confirmed what we suspected. Chandler was born with Spina Bifida Occulta. He had a birth defect. But this was nothing compared to what my friends’ son, Christopher, was born with. Or another friend, Gina, who’s son has to be in a wheelchair most of the time. Chandler can walk, run, and jump (not very well). He referred us to a woman who would eventually do surgery on Chandler’s spine.

Dr. Monica Wheby, a pediatric Neurosurgeon at Emanuel Children’s Hospital, met with us after Grandma Brown called in a huge favor to have him seen a month later (normal waiting time was 5-6 months). When we met with Dr. Wheby, she did another physical exam, checking the same things that Dr. Shih did. She concurred with his diagnosis, and checked Chandler’s MRI and showed us what was causing the problem. Of course, we’d know more when she was in there, fixing the problem. But she scheduled surgery 10 days later, after Rob’s last final for the term.

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