Hurry Up

There are times lately where I just am at a loss for words.

Whirlwind doesn't begin to describe our last month.  Between the start of soccer and end of the year festivities, we survived a very long viral infection with the boy.  Luckily, while it was tough and fast, the flare that came after only lasted a few days.  However, we are now combating the after effects of the weight he has lost.

On the other hand, a few weeks ago we participated in the Take Steps Against Crohn's and Colitis in honor of Cole.  Not only was it powerful to see so many other people there in support of IBD, but heartwarming to be joined by so many people on our team in support of not just Cole, but our family.  It has been a challenging journey and this day reminded me that we are not alone, even though there are days it sure feels like it.

Throughout our medical odyssey, there has been tremendous "hurry up and wait" in terms of testing and moving forward.  It seems we've returned to the first part of the cycle once again.

Once again, we are heading for numerous blood tests as ordered by a world renowned immunologist whose specialty is nk cell function.

Late Friday afternoon we received a call from our immunologist outlining some of this doctor's concerns as well as his desire to have a number of new tests run that should offer answers, or at the least, further direction.  Due to the impressively low function, yet not the absence of function, this man believes there must be an underlying cause, not just Cole's IBD.  Again, the blood markers he is looking for in combination with the other panels being run should confirm or discredit some of his thoughts.

As before, some of the blood drawn will go to Cincinnati Children's.  Additionally, a portion will be sent to a lab in Philadelphia.  Some of the tests take a few days, some others, a week or two.  These waits aren't really all that long, considering the lengthy wait last December for Cole's genetic panel for NEMOS. Still, depending on the results we already know further genetic testing may be done and I am not looking forward to that wait.

But, no matter what, I will continue to be patient, one day at a time.  I will continue to share here, just know that there are days neither Nick or I have the words to express where we are and are just trying to keep things as normal as possible for the kids as we move down this road.  This new normal has taught me more than I could ever describe, and my heart goes out to those parents and families whose adventures are much harder than ours.  It is in talking to these families I realize how truly fortunate we are, no matter how difficult our path has been, it could be so much steeper.

Cole's Crohnies

As a mom, it is difficult to know there are times I just can't fix what is happening with my child.  Honestly, I figured this day would come when one of the girls went through their first break up, not with my toddler, and certainly not about any medical concerns at this point in life.  


There are times I truly feel helpless in terms of what to do when Cole is not feeling well.  What makes it even more challenging is that at this point, he still says very little and on tough days, says less.  Bouncing babble is replaced by agonizing screeches and writhing until he settles into a comfortable position.  On these days, we often spend hours snuggling and pacing as they are the only activities that are able to soothe him.


As optimistic as I try to be, there are times I am frustrated.  I just want to take this suffering away from Cole.   While I don't have super human powers to eliminate his pain immediately, I can do something that has the power to change his life over time.  I can help raise money for research against this terrible disease and start a team for the upcoming Crohn's and Colitis walk. 


I have registered our team in Cole's honor to walk in the Take Steps for Crohn's & Colitis Walk this June. Take Steps is CCFA's national evening walk and celebration and the nation's largest event dedicated to finding cures for digestive diseases. It is a casual 2-3 mile stroll to raise money for crucial research, bringing us closer to a future free from Crohn's disease and ulcerative colitis. 


Please consider joining our team, Cole's Crohnies, and help us take a few steps towards making life better for not only Cole, but others like him.  Like the man throwing starfish back into the sea, while he couldn't save them all, he made a difference for them one at a time, and that is my goal, for us to work together to make a little bit of a difference every year so researchers can keep moving forward, striving towards a cure for these digestive diseases.  


Thank you all for your constant prayers and support, they are our sea.


http://online.ccfa.org/site/TR/2012TakeStepsWalk/Chapter-WesternNewYork?px=2600658&pg=personal&fr_id=3199