Tuesday, October 30, 2012


Thanks for the messages - we are still waiting.  Will update as soon as we know anything.


Today's supposed to be the day.  Fingers crossed the phone rings early.  Hopefully you are all safe and warm in this storm.  We have a fun day planned, hoping to celebrate some good news!

Monday, October 29, 2012


If our situation were a novel, I'd be tempted to look at "Frankenstorm" as some type of foreshadowing.  In the calm before the storms, we've prepared with water, batteries, and food for the impending short term catastrophe, distracting in a sense from what we've really been anticipating, the call.

It's almost too coincidental that the two events have been forecast to slam our household at the same time.  Both with potential to alter pieces of our lives, both advancing while all we can do at this point is wait and ride out the storms and their aftermaths.

If I were analyzing elements, I'd surely tell you the weather was hinting something more than just the physical storm.  Could it be the emotional turmoil of characters, their conflicts?  Perhaps a turning point, as after the storm there is always a rainbow.  Is the anticipation merely rising action, leading to the climax of the tale?

Either way, while a story, our situation is certainly far from fiction, even though I'd like to wake up and learn the bad parts were just a dream.  So I will step away from analyzing the weather and its timing in our saga, I prefer looking at all the positive signs that something good is on our way.

Stay safe everyone.    Hoping to share a break in the clouds with you tomorrow.

Tuesday, October 23, 2012

Rainy day

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~Leo Buscaglia

Yesterday, our church knitting ministry presented Cole a blanket which they prayed over as they knit.  While the person creating the blanket may only know we are parishioners and Cole has medical issues, they still cared enough to give of themselves for a stranger.  Truly, these gestures mean so much on our road.  

Sometimes I think our world moves so fast, our days are so packed with activity we sometimes spend so much time thinking of the big picture we don't stop to focus on the tiny details, and without the little pieces, the rest is out of focus.

Smile at someone today.  Listen completely today.  Appreciate the small stuff today.  Tell someone how much you care about them.  Give an extra hug at bedtime just because.  Stop to jump in the puddles and dance in the rain.  What is small to you, is tremendous to another.  

Monday, October 15, 2012


DRAW DAY! Dreading Cole's draw but this means the two week countdown begins. No matter what the news, the fact that we will have it by my birthday is the best present I could get this year! Looking for the zebras has been long and lonely at times - having you all, friends, family, and readers encouraging us and praying for Cole means so much to us! Thank you all for listening, understanding, and just being there.

Thursday, October 11, 2012


Just finished doing a phone consultation to fill in all the rest of the blanks for the newest study.  Draw for Cole, Nick and myself as well as consent form signing all scheduled for early next week, which means results likely by the end of the month.  Still so very excited!

Beautiful Ride

When you are young, things are so often black and white, choices so much easier, right and wrong.  The older and wiser you grow it seems there are so many more shades of grey.  I suppose this is one of the reasons people long for the carefree days of their youth or even why people suddenly age.  Ironic, since in youth all many kids want is to grow up, never totally realizing the simplicity they have for such a short time.  

Indulge me today.  Each day is a gift, no two are exactly the same, so don't take today for granted.  Look around at where you are and appreciate where ever you may be in your life.  Things change so quickly sometimes, be grateful for today and live for the moment you are in.  Life is too short to take anything for granted, in the words of Gary Allan, "it's a beautiful ride."  Take that ride today.

Monday, October 8, 2012


Two years ago I never thought a doctor's phone call would leave me just as excited as having a baby!  Ok, maybe not quite that much, but enough to get me bouncing off the walls! 

Earlier today our immunologist called us to inform us that Cole was finally accepted into a study regarding his IL-10 receptors.  Since gi brought it up last spring, immunology has been looking and trying to get Cole evaluated by a researcher looking at IL-10.  Since this particular study is newer, from what we've been told, it has been a bit of a challenge moving ahead.  Either way, after months of waiting, that is behind us, and as soon as the special blood collection tubes arrive here at Children's Hospital we will be forging ahead.

Why did we need to consent to another research study?  According to our doctor, CD-16 and Cole's nk deficiency are completely separate issues from his gi issues, which the IL-10 could be related to, thus the need to delve further into this particular sequencing and in a totally different study.

Unlike our last genetic testing which took almost two months for answers, results will be available after two weeks of not only Cole's sample, but mine and Nick's as well.  As much as I am bubbling over like a bottle of champagne, I am also anxiously awaiting answers.  I can't even explain how incredible it would be to have more information to shape Cole's treatment as well as to help direct our sails.  Instead of drifting without a map, we could chart a stronger course towards our goal of keeping Cole healthy and happy.

I know there may not be a final answer in all of this for some time, and for now, while we often feel backed into a corner, left with very few options, new answers may just be around the bend.  The work from this study can change where we are, be eye-opening, giving Cole's physicians missing pieces of a puzzle so they can finally see what it is they have been trying to construct.  Honestly, I cannot express how hopeful I am for what lies ahead, instead I'll just keep doing the happy dance in the kitchen for today.  Just so incredibly excited!