Today… I felt something I haven’t felt in a looooooong time. Peace. I was on my way to Willow’s 6 month check-up and thinking how awesome it is that Willow’s heart is finally healthy and all that scary stuff is behind us. Things seemed bright… light… wonderful. If only life had a pause button.

A simple question. That’s all it took to steal my peace.

“I’ve noticed that Willow has been tilting her head a lot lately. Like a lot! Do you think it’s a muscle thing or what?”

Without answering… Willow’s pediatrician reached for her head and attempted to correct her tilt. He was met with resistance. And then he started talking…

Several big words and many tears later… this is what I know: Willow has what’s called torticollis. Head tilt. She had it early on in life and it appeared as if it was getting better… but for some reason it took a dramatic turn this past week. It’s that dramatic turn that has her pediatrician’s attention. It can be the first sign of Atlantoaxial Instability. There’s one of those big words. AAI… as it’s commonly called.. is basically increased mobility between the first and second cervical vertebrae and according to this fancy book I was given after Willow’s birth… AAI occurs in about 15% of kids with Down syndrome. I’m not going to go into what it means IF she has it… because I just can’t. It hurts too much to think about… and I also need to remind myself that it’s a big “IF” right now. It could just be a muscle problem… like I thought… hoped… and am praying for.

So… the next step is an MRI… which means sedation… and depending on the outcome of the scan… possible sedation for me. ha ha. C’mon people. I’m trying to be funny! I’m tired of crying. I’m also just plain tired. I’m not sure when the MRI will come… as they are scheduling it for us. I’ll keep you posted… as I’m hoping all you prayer warriors will help us out again. God has done some AMAZING work through Willow. While I’m scared and shaken at the moment… I know that He is in control… and as crazy as it sounds… He loves Willow even more than I do.

The American Academy of Pediatrics’ Committee on Sports Medicine – See more at:
The American Academy of Pediatrics’ Committee on Sports Medicine – See more at:

One thought on “Torti-what?

  1. I will be praying for both of my sweethearts! Again, we will continue to “Trust in the Lord with all your heart”…

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