Sunday, November 2, 2014


So last week we did get a bit more news from Cole's immunologist.

Although it was news, it didn't really give us any more to go on or additional pieces of the puzzle.

Our local physicians have heard back from the experts in Cincinnati.  She even forwarded the very technical response to us to read, even though she herself was consulting Cole's local genetic team to ask for further clarification of what was being explained.

While I don't really grasp it all, there are a few basics I do understand.

The test we had been waiting for this summer, the one that the lab did not run as they felt it would not provide any information we would need, might in fact be important to run.  If this is the case we will have the blood drawn as soon as possible.

There are some other panels that it seems might be able to be run to determine the fhl diagnosis or probability.  Again, if these panels are able to give physicians a new piece of the puzzle we've been trying to understand for the past three years, I'm all for it.

Really, the rest was rather technical.

Still, in my mind, the more questions that are asked and the more people trying to solve this mystery the better.  It could be that one set of fresh eyes that gives everyone else a new perspective.

I hope to have more to share soon.  I am just grateful for all the doctors who keep looking and trying to make sense of all of this.

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