A Long Overdue Update

Our family had some challenges in 2017 that resulted in a lot of unknowns related to Knox’s medical care. This is the first in a new series of posts that I hope to write to catch people up to where we are now with Knox and his little leg.

Gosh, I haven’t updated Knox’s blog in 3 years. On the positive side, that is a testament to the fact that, for the most part, he has simply lived as a typical little boy. However, we have had unexpected challenges over the past year. To quickly recap:

We had been tentatively planning on Knox having rotationplasty surgery around age 4 with the orthopedic surgeon he’d been seeing since birth at Children’s Hospital of Colorado here in Denver. In the summer of 2017, we learned the surgeon was having health issues and would retire by the end of the year. If we wanted him to perform Knox’s surgery, we would have to do it ASAP. However, at the time I was pregnant and we were in the process of finishing remodeling and selling our home. It was less than an ideal time to schedule a life-changing surgery, but if we didn’t, we would have to find a new doctor to perform the surgery later. The decision was taken out of our hands when our surgeon abruptly retired well ahead of schedule.

Around this same time (August-September 2017), Knox started having extreme, sporadic pain in his little leg. He would be perfectly fine one moment and then suddenly let out blood-curdling screams the next, clutching his little leg. These bouts of pain usually lasted several hours. The first time it happened, we went to the ER thinking that perhaps somehow he had broken his little leg, even though he hadn’t fallen as far as we knew. His X-rays came back fine and Knox had calmed down, so we went home and chalked it up to a random occurrence. But then about three weeks later, it happened again. We went back to the ER, this time sure he must have a stress fracture that was missed on the X-ray. Again, tests came back fine. The doctors’ best guess was that he was having muscle spasms. They prescribed Valium and again sent us home.

But then these bouts of pain began happening more and more often. They happened at the movies, at the zoo, at preschool, in the car and in the middle of the night. Over about two months, we made multiple visits to his pediatrician and to the orthopedics department at the hospital. We tried a range of medicines, chiropractic and osteopathic care, topical oils and creams, dietary supplements.

Finally, after a ton of blood tests and imaging, an MRI revealed a mass in his little leg that was pinching a major nerve. It’s not a dangerous mass — it’s likely cartilage. But right around this time (about a year ago), Knox’s pain somehow resolved itself. We still don’t know how or why, but gratefully, we had a new prosthesis made and he was quickly back to his old, active self.

However, with that urgent matter out of the way, we still found ourselves needing to find a new surgeon.

I’ll continue this update soon with the story of that journey!

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