New Doc – New Plan

January 10, 2024

As has happened frequently, we went to Salt Lake City with one plan in mind (see last entry) and came home with another. 😏

The doctor we have had from the beginning and through all of the surgeries has left Shriners for private pediatric orthopedic practice in SLC. While we would have liked to stay with him, the Burner insurance plan would not cover the costs which would have been significant. So we stay with Shriner’s which actually makes our lives much simpler.

At Shriner’s we met our new surgeon Laura Bellaire whom we liked very much. She spent quite a bit of time talking to us and explaining the challenges with Kadence’s condition, the benefits/risks of medical options and her opinion for moving forward with treatment.

So….. Dr. Heflin’s plan (halo and spinal fusion) was contingent upon whether or not they could extend the rods this trip. They were able to move them a bit which means that the rods are still intact but she is just not growing a lot right now. As long as the rods are functioning correctly, Dr. Bellaire is of the opinion that we should leave them in place both to stabilize her spine and to allow for continued growth in her thoracic region. Right now her thoracic region ( and consequent lung capacity) are just below the threshold for “normal”. Dr. Bellaire indicated that Kadence would likely function well at that capacity but more would be better – even if it is a small amount.

The new plan:

  • Rod extensions every four months rather than two. Hopefully she will have a growth spurt as she enters puberty and they will be able to further expand her thoracic/lung capacity.
  • X-rays every six months to monitor the curve and plan accordingly.
  • Maybe halo – as Dr. Bellaire is not convinced it will be necessary or beneficial.
  • Remove rods and insert spinal fusion rods. We are hopeful that this will be done next spring (2025) so that she can get a full year of growth and extensions.

This has involved a bit of a shift in our thinking as we were expecting a much longer stay in SLC this summer but as Dr. Bellaire explained, this seems like the right option. We continue to appreciate the care we get with all the Shriner’s staff and from our family/friends.