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What is Torticollis?

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The thought of Lily getting this level of care was unreal. Someone finally took Lily’s head tilt as seriously as we did and didn’t just think it was a cute mannerism.

But there were so many questions. What would Lily have to go through in order to overcome torticollis? Surgery? As terrible as it sounds, I wished for surgery because I felt nothing else would work. And if surgery were required, I knew the doctors at Shriners were the ones to do it.

In June, we got on a plane with “vacation” in the back of our minds and “surgery” in the forefront of our minds. We did the tourist thing and later spent four hours at the Shriners Hospital. They did X-rays of Lily’s neck and hip and examined how Lily moved and held her head.

The verdict—surgery this fall. They will make incisions into two of Lily’s neck muscles. But that isn’t the worst, or best, part. Lily will wear a halo system that requires her head and upper body to be in traction for six months up to one year. She will wear it her first year of kindergarten. She will sleep in it. She will play in it.

Boog, Lily and I will make monthly trips to St. Louis throughout this time period, and there will be follow-up visits.

People ask me, “What does Lily think about this?” So far, she doesn’t know. All she knows is that she had a vacation and went to the Shriners Hospital so they could “look at my neck,” she says.

And maybe since she is 5, she’ll forget most of it. In the meantime, Boog and I are educating friends, family and whoever will listen about congenital muscular torticollis in preparation for the journey.

You can find a resource list for families who have children with special needs here.