Giving Thanks!

This Thanksgiving we are particularly grateful for our smily, silly, snuggly little boy, for the strength our family derives from each other, for a surgical team we believe in, for medical advancement and a procedure that can help protect our son, and for the love and support of our friends and family. Thank you! We wish you all health and happiness this holiday season and always.

Surgery...How did we get here?

Kahlial met Ronald McDonald back in July when we traveled to A.I. duPont Children's Hospital in DE (where the specialists "live") where an MRI was performed to check for cervical spine instability. This is a common issue for those with Kial's condition, Spondyloepiphyseal Dysplasia Congenita (SEDc), and one that can cause obvious problems if not corrected. The MRI did show instability, particularly in flexion (chin to chest position), and resulting "signaling" or injury of the spinal cord. Kahlial has what is referred to as an os odontoideum, a condition in which the dens (tip of C2) is separated from the axis body (body of C2), as well as ligamental laxitiy. This mobility of the dens allows for unwanted atlantoaxial motion (slipping of C1 on C2) and may lead to impingement of the upper cervical cord or vertebral artery.

Dr Mackenzie, orthopedic surgeon and head of the Medical Advisory Board for Little People of America (LPA), recommended a decompression of C1 (removal of the posterior portion of the first vertebrae) and fusion of C2 to the occiput (back of the skull) using a bone graft from Kial's hip, along with two titanium cables in order to prevent continued damage to the cord and potentially life-threatening injury. Kial has worn a cervical collar (seen in all the pictures since July) to help maintain stability and prevent injury until surgery, scheduled for December 16th in DE. We are now getting ready to "upgrade" to a halo and vest device that he will wear post-surgery for 2-6 months (we anticipate 3 months), then back into the neck brace full-time for 6 months.

It's going to be quite a year.... Already has been I suppose. We've wrapped our brains around this surgery about as much as we can. We knew that this procedure was highly likely for Kahlial. We just didn't expect it so soon. However, we've found a number of reasons why doing it early will be beneficial: hopefully won't remember much, won't interfere with schooling, will be able to be a bit more of a rough and tumble little boy earlier.

So off we go.... We'll be flying out on December 12th. Stay tuned for updates regarding pre-surgery appts and diagnostics, surgery on the 16th, and the recovery to follow. Please send positive thoughts and energy Kahlial's way. Thank you!