Set-back

During Sunday evening's turning of the screws, the hardware came up against one of Katie's tooth nerves and caused her to hit the roof on the pain scale. She was frantic, and we didn't know what to do, so I called Dr. Gordon's cell phone directly. He said to back off the screws to where they were before we turned them tonight. That seemed to relieve her enough that we could get her settled down to sleep for the night. When we saw Dr. Gordon today, he said that KT was by far the most difficult distraction he's ever worked with, because of the uniqueness of her anatomy. So, he is calling Germany today to see if he can get a special set of hardware ordered that will allow us to continue the distraction; if it will take too long to get that custom-made stuff, he'll convert to a halo to finish out the lower distraction, even though that type of device is built to do the upper distraction, not the lower. He'd have to jimmy-rig it to make it work for this part of the process, but then it could transition to use in the next phase, or upper jaw distraction. He admitted today that he's having to make things up as he goes forward with her because of how little bone there is to anchor the distractors. We'd be pretty discouraged by now if it weren't for the dramatic increase in airway that we're seeing week to week.

We now have two other Utah families here - one doing the same distraction as we're doing, and another doing a bone marrow transplant. Keep praying for this little gal! There's still a long row to hoe. Thanks for all your support along the way.