Curvature

Pookie has been in a brace for scoliosis for six years now. We met with her orthopedic surgeon (and his resident) today. For six years we've gone in every six months to check in and see how things are going. Every year Pookie has x-rays taken to monitor the curves in her spine. Every year we find out that they're progressing... slowly.

Pookie's spine began twisting and curving in the year she was 4. Just before she turned 5 she had lumbar and thoracic curves that each measured around 25 degrees. Her orthopedic surgeon slapped a full-torso brace on her and gave us a rather motivating speech. When curves progress beyond 40-50 degrees they need to be stabilized with rods after growth ends. If they reach 80-90 degrees they're life-threatening, as the heart and lung get crushed in the bend. If they get that large before growth ends you put rods in, and then need to repeat the surgery to accommodate any growth. If the curves get big while a child is very young, you need to put rods in on the front and back of the spine to stabilize it. And then repeat as necessary as they grow. I didn't even want to think about how you get to the front of Pookie's spine. It was a very effective lecture.

But in the end there's only so much bracing can do. Her thoracic curve is so high that it is hard to brace. From the time Pookie was first velcroed into a brace, she had at least ten maybe as many as fifteen years to hope the brace could hold back whatever torsion is built into her spine. Her orthopedic surgeon has said that we are just hoping to slow it down and buy time. So far we've bought six years, and are out of the window for front and back rods. But in those six years her curves have progressed into the high 30s and low 40s.

We have a friend, who has the same rare syndrome that Pookie has, who also has scoliosis, who is scheduled for surgery at the beginning of January. His curve is over 80 degrees now, and it is only his "dysmorphic barrel chest" that is saving him. He's been out of his brace for a year as they've waited for surgery. When it's over, his spine will be significantly straighter, and he won't have to worry about bracing. Of course, sections of his spine will be fused and supported by metal rods...

The amazing thing is how well she has tolerated her brace. I would hate to be cinched up snug, squeezed for eighteen or more hours a day. She rarely protests, and has just accepted it as part of her life. It just is. I know I would struggle to be so Zen. But then that's just who she is. She doesn't worry about yesterday or tomorrow. Frustrations pass quickly. She lives, laregly contentedly, right NOW. She asks for what she wants, for what would make her happy, then makes due with whatever is available. She'll repeat herself all day, but she rarely gets worked up about it. (Of course that power outage the other day was one of the things that pushed her into sadness. Why couldn't Mommy make everything work again?)

Today was a trying day for her. First we met with her gastroenterologist. Then she had her x-rays taken - all four of them, and she does NOT like x-rays. Then we met with her orthopedic surgeon to review the x-rays. Then we went to the brace shop because her two-month old brace was made too small and needs to be rebuilt. And finally she needed to have blood drawn for her GI doctor. We saved that for last as we figured she would be most annoyed by that. So after hours of waiting spread throughout the day, we were finally on our way home.

Except that she had had enough. She plopped herself down on the floor in one of the hallways and refused to get up. No way. She was DONE. I stood her up. She sat down. I explained that we were heading to the car to go home, that we would be at the elevator soon (her favorite part). Nope. I understood her point. Enough is enough. So I scooped her up and carried her to the elevator. All 75 pounds of her. She's too heavy to carry these days... Dad piggy-backed her to the car, where she sat happily as we drove home.