Thursday, June 12, 2014


In the midst of our journey, I have had a nagging in the back of my head, a foundation I would like to start, run, and make a difference for parents and caregivers like us.

I know little about beginning a non-profit foundation, nor do I have my own start up funds, but I know about helping people.

While I've had a couple contacts for a while, I finally took a leap, with the faith that my idea wasn't all that insane, and sent out my proposal last night.  I'm looking forward to feedback from these individuals as well as direction to make this thing take flight.

Wednesday, June 11, 2014


Life has gone on since our genome sequencing results.  We've been back into our outdoor routines, walks in the parks, annual fishing derbies, and waiting for the next call.

Today we had our three month gi check up.  Honestly, it couldn't have gone better.  Cole continues to remain in remission from his Crohns, so the remicade is doing its job.  He has been able to keep his weight stable and on the growth charts while his height keep exploding.  With any luck, he may be taller than me before he turns five!

In terms of his blood work from a gi standpoint, it was once again, the best they have seen it.  Cole truly is thriving.  For now, all of his gi treatments will remain as they have been, since the combination is working for him.

Just like our last sit down with immunology, we have been reminded that Cole is quite rare.  Not just the genetic abnormalities, just the various diagnoses he has been given are not handed out like candy on Halloween.  Even with such great progress, it seems we always have to remember what else Cole is facing, not that we would ever forget, we live our lives around his well being.  Still, I think of his rare as a gift, for that is what he has been to this family, a gift of light in so many ways, one with a glimmer few others are lucky enough to see.