Friday, March 2, 2012


Funny how you can remember when certain things happen as if they were time stamped in your mind. The last weeks of February bring Valentine's Day and Nick's birthday. Somewhere in between the two is when all of this began with Cole just over a year ago.

It is difficult to believe a year has passed and we are still searching for answers.

On Monday we learned from our immunologist that Cole does not have CGD, however his nk cell function still came back in the low single digits, slightly lower than the test in the fall. From a medical standpoint, she explained the importance in understanding why Cole's nk cells are barely functioning. Once again, our doctor has reached out to a leading expert from Cincinnati Children's Hospital because at this point she has run all the "normal" tests they would in this situation and is not certain how to proceed. Since the physician in Ohio is the nk cell guru, she should be able to give us a further recommendation or know of a research study that is looking at this type of cell dysfunction with his other symptoms. She may be able to validate a connection between the nk cells, granuloma, and Crohn's Disease, which, as progression is documented over the next few months, may finally be officially diagnosed. Right now there is still the question if all the inflammation is Crohn's or a symptom of something else as many of the different primary immunodeficiency diseases wreck havoc on various organ systems, including the digestive system. Funny how at this point in this journey we are praying it is only Crohn's. There are still many obstacles having this so young, but looking at the other possibilities, this is the lesser of all evils. If this is the case, not only will he continue on his course of current antibiotics, but there is a possibility Cole will be placed on prophylactic antiviral medications to help ward off infections before they can start.

The watched pot never boils, the same is true with the phone. It seems when I am given a time to expect a call it never comes, so instead of anxiously sitting by the phone Thursday morning, I stepped out for an hour with some friends for coffee. Of course the call came, however our physician assured us she would call back at 12:30. Around five I gave up on hearing from her for the day.

So, today should be the day for news. I've got my pen and paper ready for notes, my questions prepped, just need my source. After a year, I am not only ready, but almost desperate for definitive answers, even if it means another turn on this path, anything that brings the doctors closer to the information they need to help Cole.

Once again, thank you all for the message and prayers, your support and love help us stay strong. We love you all.

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