Friday, September 3, 2010

A Visit to Scottish Rite




Julia bounded around the waiting rooms and halls of Scottish Rite hospital with endless energy, not letting her "crooked" leg slow her down as we waited to see the surgeon praying that he would tell us he could fix her leg.

She can walk. She can kind of run, but she falls every time. Most of the time, she happily pops back up and starts again. Occasionally, she bumps her head or scraps her knees, but she is one tough girl so it rarely bothers her for more than a moment.

Julia's walk and run are not exactly elegant. I know exactly which one of my girls is coming down the hall by the sound of the walk. Hers sounds like stomping.

Before she was born, doctors told us Julia might never walk so that sound is music to my ears. It's definitely not the "pitter patter of little feet," but I'll take it. I am blessed; she is blessed. And I am so very thankful for the amazing doctors and therapists who fixed her foot and gave her the gift of independent mobility.

I knew what the doctor would say, but I prayed for a different answer.

"She can walk, and she is an amazing child. I can't improve upon that." Ultimately that was his opinion.

We saw two doctors. The "real" doctor and the Fellow. We saw a physical therapist, who told us she falls because she is new at walking. Genious!

Julia had x-rays, and we waited and waited and waited.

First, we saw the Fellow and we explained that Julia walks on the side of her left foot because her leg bows out, it is getting worse, it causes her to fall and her AFOs are not helping to improve or maintain it.

He sat in the middle of the room and watched in amazement as Julia ran, danced and climbed around him. I could see that while he saw that her leg was "slightly bowed," he didn't get it. He was in awe of her. He saw a miracle. "She is amazing," he said.

Then, came in the physical therapist. I explained it all again-- her leg is crooked and it causes her to fall a lot. She can't run without falling, etc.

The therapist looked at me with a condescending smile and said, "She is new at walking. She is still learning; that's why she falls."

I wanted to scream at her, "NO, NO, NO!!!" She doesn't fall because she is new at walking. She falls because her leg is crooked and she walks on the outside of her foot. She can't run without falling, and I want her to be able to chase her sisters. Is that too much to ask?

Next, we went for x-rays of both legs and then came back and waited to see the orthopedic surgeon, "the real doctor."

Dr. Richards checked out her foot, knees, hips and legs and then watched her walk. He said her foot was perfect, knees and hips were good. She has excellent movement and mobility. Again, she is "amazing." He showed us the x-rays, which showed that her tibia on her left leg is rotated, causing the bowed appearance. He explained how he could do surgery to correct it by cutting her tibia in half, rotating it into the correct position, casting it and waiting for it to heal. Then, he said her mobility is excellent and she is still growing so it would probably rotate back in a couple of years.

"If she were my girl, I wouldn't do it," he said. He said that to do the surgery would not improve her mobility, but would make her leg look normal.

I disagree.

I know they are exprets, but I am an expert on Julia Catherine. I know her capabilities are endless. I know everything about her, including exactly how amazing she is. I know that if her leg were straight, she could run without falling. I am not sure that running is worth getting your leg cut in half for, but I'm not sure that it isn't either.

I spend all day, everyday with children, and children like to run and skip and jump and play. I have to fight for Julia to have every opportunity to do "normal" things when amazing and miraculous aren't enough.

"Strength does not come from physical capacity, it comes from an indomitable will." -Mahatma Gandhi

1 comment:

  1. Lauri, I work with your mom and I have a 31 year old daughter with SB so I do understand your issues. There were many times I left Scottish Rite frustrated for similar reasons. With Ali it was about her kyphosis and scolosis but I do understand that you want the best for Julia. Always, always be her advocate because you are strong enough to be and you do know her better than anyone else. In the end, Ali did not have the surgery and it really did turn out for the best; however, I still wish she could sit a little straighter and have an easier time finding appropriate clothes that fit. When I think of that, I also remind myself that I am still very blessed to have been able to use the resources at Scottish Rite and to have Ali as part of our family.

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