Understanding the Disorder

12:15 Robert, Zachary and myself went down to Vanderbilt Children’s Hospital today by request of Dr. Jordan to meet and talk with Dr. Singer who is a neurosurgeon who specializes in blood vessels to the head and spine. We met with Dr. Jordan first and she examined Zachary and talk to us a little bit about Z’s condition. From what I understand she said that the brain and the spinal cord are surrounded by the Dura Mater, which is the tough fibrous membrane that envelops the brain and spinal cord. Within this space there are traces of 

old and new blood. The goal is to find out where the new blood is coming from and try to stop whatever it is that is causing the leak. Once that is done the body should be able to reabsorb the old and the new blood and hopefully the blood surrounding the nerves which seems to be causing the nerves to “stick together”. The blood surrounding the nerves is what’s affecting Z’s mobility to his back and his legs. So? we didn’t really get any new news, just a little better understanding of what’s going on within Z’s little body. While we were at Vanderbilt Robert and I decided we would get copies of all of Z’s medical records so that we could add it to his medical journal. My hope is to be able to help someone else, maybe another child who has this disorder, maybe an adult who has it, or even a doctor. We didn’t get to meet with Dr. Singer at all today, unfortunately there was a scheduling muff up at his office, they’re rescheduling the appointment 2 weeks from today. Seriously? Can I just hang my bucket of nerves and concerns out to dry. I’m tired of carrying them.

Z attends Physical Therapy three times a week, as far as mobility he has had very little, to no change. Measurements are about the same, however things are stable and not getting worse.