A Steady Stone

That itty bitty miracle we all ordered? Yeah? Well, it's been found!! I thought for sure it would be on backorder, but no, it was sent right there to Dr. Jordans office, He knew where I'd be! ;) I can't even express the relief of finally having an answer to all the mess going on within Z's body. Okay, are you ready for the update? Well, of course you are ... Here we go!
A little anatomy lesson to start this all off. You see, you have a lining that wraps around the outside of your brain and spinal cord, now between your brain, spinal cord and this lining there is free flowing fluid, called spinal fluid which helps to protect these parts. In the center of Zachary's back, about 6 inches vertical, this lining has attached itself to his spinal cord and within those 6 inches there is no free flowing spinal fluid. It is believed that when Z is active he pulls on this area that is stuck to his spinal cord and creates little tears, causing bleeding within that area, this ... is what has caused the Superficial Siderosis in Z. 

Dr. Jordan's art work. Aww, I should've had her sign it. 

Now, you ask. Where do we go from here? Oh well I have the answer to that! Here! Here! Pick Me! Pick Me!! lol The results to Zachary's Myelogram will now go the the neurosurgeon who performed the Angiogram on Z to get his recommendations and then all of that will be sent Dr. Levy at John's Hopkins to get his recommendations and then after all the doctors have all consulted with each other ... then we will find out what will be next. For now .... we are basking in the moment of this totally awesome miracle. In case you didn't know ... statistically there are very, very few Superficial Siderosis patients who are even able to find the source of their leak. We are truly blessed! Thank you all for keeping Z in your prayers, this is definitely not the end to our long journey, but a steady stone to step on as we move forward through the storm. :)


What about Ferriprox? Is Z able to get that yet? If Z were getting worse then this would be something we would look into but because he's pretty stable right now and the drug has just been approved by the FDA I think we should just sit tight for now.


While researching I found that the statistics for losing hearing is pretty high, how often do you recommend I take Z for a hearing test? Once a year


Z has an appointment to see Dr. Thomsen about his stomach pains do you think it might be related to SS? I'm not sure about that, I'd have to consult with Dr. Levy about that one. I'm thinking it has something to do with Zachary's pain medication, keep that appointment with Dr. Thomsen I'm interested to see what she has to say.