We were referred to Gillette Children's Hospital in St. Paul, Minnesota by our neurologist in order to get better counsel about Mr. Boy's spine. So David and I drove Mr. Boy 4 hours there and 4 hours back yesterday for the appointment. We learned a lot about all of Mr. Boy's body and the reasons for everything, from this one visit, which was very helpful.
Medical (long-winded) explanation: Mr. Boy's spine is missing some tendons, is curved, and has a tethered spinal cord (the cord is attached instead of free to move and stretch like ours). The term "Sacral Dysgenesis" which the doctor told us was part of his's back problems, is just a blanket term meaning there are damaged parts to the sacral part of the back. His lower back, or lumbar spine, is missing parts. These missing and/or damaged parts are the ones which affect the physical processes and neurological messages to the brain concerning lower abdoninal function, as well as leg and foot function. The Dr. thinks his leg function is good, but foot functions like pointing toes, flexing the foot, etc, seem to be inhibited. The brain may not be able to receive signals to do those kinds of functions since those parts of the spine are damaged and can't send the messages to the brain. I may have botched some of this scientific info, but this is how we interpreted what the Dr said.
Practical explanation: In a few months they will do surgery to release Mr. Boy's spinal cord which is tethered down in order to keep it from causing more damage as he grows. They will continue to watch his spine for scoliosis yearly and do surgery as needed. Mr. Boy will most likely have to wear braces on his legs the rest of his life in order to walk.
We are thankful we were referred to this hospital because they really know what to do with Mr. Boy and how to explain it all to us thoroughly. They have seen kids like Mr. Boy and spinal problems like this many times before and so its not shocking for them or difficult to handle, so we feel like we are in good hands.