Positively Negative

Jordan & the rest of us had a hell of a day back in mid-June, when her veins got fished for an IV and even her jugular was bone dry. . . . In the end, after 11 painful pokes over 1.5 hours, they were able to sedate her & complete the lumbar puncture. Phew! It was harrowing to be the holder while they poked and fished, poked and fished. Oddly enough, once she was asleep & it was time to draw the cerebral spinal fluid, they made me (and nurse Robin) leave the room.

In the end, there was plenty of CSF to send aliquots all over the world for analysis. It wasn't cheap or easy, but by the end of the day samples were on their way all over the US, as well as Canada & France. We're still waiting on results from the University of Alberta's Metabolome project, but the results from France (for Aicardi-Goutieres Syndrome), and from all the other labs (neurotransmitters, biopterins, and folate deficiencies diseases) were all negative -- of course! These diseases were longshots, but at this point the longshots are all we have left.

So, we're right back where we've always been. All we really know about our mystery Jordan is that her brain didn't form quite right, and that's all there is to it! I guess we'll never know why because there really isn't a why, it just is.