The bad news has arrived.

I’m reposting this from my husband Michael’s blog, because he explains it better than I can right now.

When Caitlin first started to develop scoliosis, we knew this was coming. Many of the Aicardi girls develop neuromuscular scoliosis. There is nothing that will prevent it, and there are no nonsurgical cures once it starts.

Last year, the curve in Cait’s spine was 49 degrees. Since then, I could see it worsening. Caitlin used to sit on the couch or big leather chair for over an hour at a time. This year, after 15 minutes she would either cry or tip over.

Then I read how two of her Aicardi cohort were getting back surgery.

Yesterday was Caitlin’s appointment with her orthopedic surgeon. The curve is now between 69-76 degrees.

Cait’s doctor gave us a choice. We could let it go. The scoliosis will continue until it’s greater than 90 degrees. He doesn’t believe that the diminished lung capacity will hurt her, but it will effectively end sitting for Caitlin. She will be bedridden or always on the floor, at an odd angle in her molded wheelchair, and hard to transport. (We would need $25,000 for a converted van at that point.) She would also likely be in some discomfort.

The alternative is surgery. We don’t have the full details, but this would be a 5-6 hour surgery where the surgeon straitens her spine and inserts rods. The recovery will be very painful. It took her nine months to fully recover from hip surgery. He doesn’t feel it will be that bad, but it’s still back surgery.

If we choose the surgery, he wants to do it while she’s in the 70s.  A greater curve will be a more painful surgery for Caitlin.

The next appointment is in 6 months. We need to decide by then.

So, that’s what’s going on right now. We knew this was coming, but it doesn’t make it that much easier when it arrives.

Yesterday was rough. Today, we begin again.


About Lynne M. Thomas

Lynne M. Thomas is a nine time Hugo Award winning editor and podcaster. In her day job, she is Head of the Rare Book and Manuscript Library at the University of Illinois at Urbana-Champaign.
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