Friday, August 3, 2012

On the Edge

Three weeks of waiting has finally come to an end.  With its conclusion, we are still hanging, teetering with knowledge, yet on the edge of understanding.  Although we have test results, until the consulting physician has the opportunity to analyze what has been found in this round, we honestly lack any kind of clue as to what these new developments may breathe into our lives.

Speaking to our immunologist today, we know that two of the various blood marker tests indicated low enzyme function.  While neither are rock bottom, neither are normal.  With these values, in addition to the nk cell dysfunction, all aspects of Cole's lab work must be carefully assessed before we can move forward.  

According to the office here, they needed direction from their compass, the expert in Houston, to make sense of what these results implied, especially in the context of what he was suspecting.  Based on his observations, we do know there may be another round of tests, including specific genetic tests.  What we don't know is what exactly these next tests are looking for.  Our hope is that these results provide a wealth of information giving this physician a clear picture of an underlying cause for Cole's immunological impairments and we are no longer looking for a needle in a haystack. 

While we keep trying to wrap our minds around it all, the marbles keep rolling along the gray labyrinth walls of confusion.  Our trust lies within the reputation and expertise of our distant doctor.  We have faith that he can find the answers we are seeking.  I look forward to the day when we can show our gratitude to him, as well as those in our teams of medical professionals and advocates who have taken a professional journey with us, yet treated us as family.  The compassion many of these individuals have shown us has been tremendous, especially when to others we seem no more than just another number in line.

As I have said at the end of so many blogs already, once again we wait.  But this time feels different.  There is an air of anticipation that is electric, as if this time we will have word that propels us ahead, instead of leaving us stagnant.  No matter what, I know whatever we hear, the road that lies ahead will be bumpy, with more detours than I can anticipate now, and I say, "bring it on, I'm ready."  What am I ready for?  Ready to continue doing whatever needs to be done to help fix anything I can, so my baby can know an innocent childhood, free from worry, focused instead on playing with his trucks and trains and his love of dolphins.


  1. You are beautiful Liz. Keep strong as you are. Love to all!

    1. Thanks Laura! Love to you there too!