Moving On

Pledge

Every December 31 the world stops to reflect on the year that has past before turning a fresh page. Resolutions are poured out as White Out on paper to correct the minor blemishes on our autobiographies.

For me, this past year has been bittersweet.  I've met goals I set for myself, one being this blog and its Facebook page. In this experiment, I have been humbled by the response by readers and likes.  I cannot thank you enough for following us on our new road, especially with Cole and his medical odyssey.

Unfortunately, we've been replaying the cycle of 'hurry up and wait' with fast testing and waiting for results that seem to take forever.  Sometimes I think we're stuck in the whirlpool with Scylla and may never make it back to Ithaca, then I realize, like Odysseus, we have already come quite far on our way back to a safe harbor.  Sharing this journey has given me an outlet for where I am as a mother, not just to be able to update, but to lighten my shoulders while letting some of the emotional weight flow through the keyboard.

Never in my life did I expect such a detour.  After all, I had achieved all I ever wanted: loving marriage, beautiful kids, and a wonderful career.  Nothing was going to stop me.  In the past year, I've learned to never underestimate the undertows of life's tides, they can snap your safety tether like a toothpick and carry you out to sea in the blink of an eye.  Treading water has also taught me that the change of scenery might be all you've been needing to blossom.

Which brings me to 2013.  This is our year.  It has been almost two years of testing, two years of waiting.  This has to be our year, one for answers.

In all of our uncertainty, I will not make a resolution, instead, I will pledge to keep embracing the path we've been led down, one day at a time.  On this long and winding road, I will not give up faith that our physicians will put this puzzle together sooner rather than later.  Every day I will stop to appreciate all that day has given.  As tough as this may be at times, I know others have it so much harder, and we are truly blessed.  Mostly importantly, I will be a pillar of strength for all our kids as they move through lessons they are far too young to know, especially for Cole, who needs to be braver than any two year old should ever have to be.  I may never be able to make this better, but I can be there for each of them, unconditionally, every step of the way.  This year will be a good one.  After all, thirteen is a lucky number.

While I will continue this blog, I have a couple other little writing projects to push forward in the months ahead.  As they emerge, I hope you will take some time to read and share, which will aid in  giving them wings to soar.

As we bid farewell to 2012, I must thank you again for reading.  I'm not sure if I would I call this little blog successful or not, but I know if one other zebra parent has stumbled upon this blog and has found a flicker of hope that they are not alone, then it has been.  If it has made some of you slow down, look around and appreciate what you have with your own children and within your lives, then it has.  Just like in my classroom, if I have taught you a lesson you can carry with you in your day or even your life, then I have met my objective.

I wish you all the very happiest New Year, may yours be filled with hope, love, and magical possibilities.

 

Fly

Light

Kids are fast asleep, little man in his crib, girls camping out beside the glow of the tree out here in the living room.  No better way to complete such a wonderful day.  To all of you, I wish you all the very merriest of Christmas seasons.

As we share our gifts of love with one another this year, let us not forget the gift we have been given on this day.

"For to us a child is born, to us a son is given, and the government will be on his shoulders.  And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace."  Isaiah 9:6

The baby born on that night was a present to us all, sent from great love, to fill the world with hope.  This hope lives within each of us, an eternal flame.  Shadowy storms may make it flicker, but the sparks shared from those around us refuel and strengthen our flames, our faith.

We wait to open our Christmas cards until the end of each week.  This way, each of the kids have a bunch to open at once and display.  Today, one brought tears to my eyes.  The overwhelming warmth and love from a family, who are really just getting to know us, is truly beyond what I can explain.  Honestly, words aren't enough to express our gratitude for their kindness and generosity.  A thank you just doesn't seem to be enough, not just for them, but for all the understanding and kindness so many of you have given us.  

The gifts we have in love, support, and friendship from so many far surpass any "thing" that can be wrapped in a box under a tree.  To know that even when we have not been able to see many of you as an entire family or for long stretches of time, and you are all still always there for us, fills my heart.

I have all I could have ever wanted, and as I think about how the babe lying in a manger changed the world, bringing goodwill to all men, I smile.  In the darkness there is a great light, even so many years later, the star is bright.

We are so blessed, and I am beyond thankful.

Interesting

Just got an email from a physician - the expert does not know what to predict for Cole as he has never encountered a case where they have diagnosed nk cell dysfunction before a difficult infection was a catalyst finding the nk cell dysfunction.  Very interesting.  I am hoping in some way this could be a positive thing.

Puzzle

Last night we finally got a little bit of news.

A further study of Cole's nk cell function has returned from Houston.  As expected, the activity is abnormal, but in our physician's words it is beyond what they've been able to test for to this point.  It also varies from what the experts expect to observe with CD16 deficiency.  Due to this, they are planning further tests after the holiday.

Of course we are to be vigilant, taking all precautions with Cole, as we are once again wading in murky waters.

While I have been patient, I can't even explain how frustrating it to still not completely know what we are looking at again.  In my head, I feel like we should know.  How is it that a 100 piece puzzle can suddenly morph into one with 125 pieces?  How is it with so many medical breakthroughs every single day, after more than a year, we are still standing here with so many unanswered questions?  And, it isn't just us, it is the doctors as well.

The only answer I have is that there is some big reason for all of this.

At Cole's christening, as our priest welcomed our son into our parish he said that the world was now complete with the addition of the new baby.  Cole is one special little boy, he has changed our lives, and no matter how frustrating it is to wait for the unknown, he is the perfect completion to our family, and I believe he can change the world.

One piece of the puzzle at a time.

Miracle

Unfortunately as parents, many of us will experience dread creeping over us as we await news that appears overwhelmingly ominous.  I know firsthand what this is like, and hope those I know never have to wrap their hearts or minds around such irrevocable proclamations.

Regardless of where we have been, I still believe in miracles.  They happen every single day.  Yesterday's phone call is proof of that.  Another loved one struggling with cancer needed to go for a scan to see how it may be progressing.  Based on earlier scans and discussions with physicians, this family was prepared for the possibility of grim words.  Instead, the scan went better than they ever anticipated.  While they still need to talk with doctors regarding the findings, they did not expect the very clean scan that appeared.  Truly a miracle in this season of light.

I firmly believe in the power of prayers and love.  My heart could not be happier for this family, as they have received such a gift after one tremendous journey.

Often, I wish for the phone call, telling me they've made a mistake, or that I will wake up to find our road has been no more than a dream and I'm back in my normal routine.  Yet I know that I have been placed on this path for some reason, not yet understood, that some good must come from this.  While I've hoped for our miracle with Cole, I realize, he is one of our miracles, truly a gift from God, and that brings me great joy.

It is now a week before Christmas.  For me, take a minute from all the hustle and bustle, stop and really look at the miracles with which you are blessed.  It is so easy to dwell upon our struggles, but within there are slivers of awe that will take your breath away, that is where we should all focus.

Green Bean is 2!!!

Two years ago, we added one perfect little boy to our family. 

Happy birthday Cole!  You have taught me so much about life while adding tremendous love in our world.

I'm looking forward to watching you grow and all of our adventures to come. You are my special little buddy! 

I love you Green Bean! 

♥ Mommy

Speechless

Not so long ago, sharing my love of reading and writing was not just my job, but an avocation, the venue was my classroom.  My biggest concerns were how did I hook the kids who claimed they hated English class in the past, never experienced the joy of losing themselves in a book, or marveled over the power of their own words on paper.  It was my duty to find a niche for these kids, to show them just how their means of comprehension, communication, and analysis would have an impact on just about anything they chose to pursue in their futures.

Sometimes, this was a struggle, convincing a willful middle school student who believed they could not write that they really could, it just took time, patience, and practice.  In the end, the majority of these kids made progress with encouragement and the feeling that it was safe to make mistakes and try again.  After all, isn't that how we all learn?  

Even with encouragement, kids are still filled with their own worries.  While some worried about the recent argument with a friend, others, about making a team, some issues at home, others, bullying.  I cannot recall a student telling me they were afraid to come to class because someone may attack the school.   Not to say that there wasn't one with this concern, I just don't recall ever hearing it.

Now, I'm sure there are students who are thinking this, just as a parent I worry about the safety of my own children.  Don't get me wrong, I worried before, but more about how to help them if they were struggling either academically or socially and of course about what unknown pathogens might be hitching a ride to Cole via the girls.

Never in a million years would I think that in the nurturing cocoon of a school, where teachers feed curiosity, mentor skills, and develop dreams that anything so unspeakable would occur.  Yes, I know as a society we saw this happen in Columbine, but that was a high school, surely innocent children in elementary schools would never be scathed by such horror.  Sadly, this is no longer the case.

It seems something terrible is plaguing our society, poisoning our youth in their own playgrounds.  I want my children to experience the wonder of learning in their school, not anxiety.

While I may have one more worry as I send my kids off each morning, I trust the teachers and staff at their school to not only foster their minds and encourage them to aim higher, but to keep my babies feeling secure.  That's the kind of teacher I hope I have been for those passing through my doors, I only wish the same for my own kids.

For now, my heart breaks for the Sandy Hook families.  I pray for you, and hope for strength as the holiday season approaches.  There are no words for this unspeakable tragedy.  It makes me look at our own struggles, and as difficult as they may be, and know no matter what, I can still hug my children, tuck them in each night, and look forward to watching their futures unfold.  We are so blessed.

My heartfelt condolences to all of you in Newtown.          

Finding

The earlier the Christmas season stakes a claim in everything from stores, to commercials, and the radio, the harder it has seemed to find the holiday.  I have never struggled being or even finding "merry" the way I have this year.  Is it the lack of snow?  The craziness of everything else going on?  After a few friends have also mentioned their "Bah Humbug" emotions this year, I know it isn't just me.

When I was young, part of the wonder of Christmas was that the season seemed to magically appear after Thanksgiving then disappear as quickly as it came.  The brevity of all of it made it something special to savor.  Now it is as if Christmas is ever present after the fourth of July!

To find the true spirit of the season, I made a Christmas bag for my kids, an envelope for each day of the season with an activity for us to do together.  The key was the togetherness, not about wants or material things.  We've gone to a living nativity, we've made homemade ornaments and sung carols, even shopped for gifts for someone less fortunate than we are.

In explaining why we do for others, specifically a girl just a little older than the girls are themselves, I started to feel a twinge of the season.  As we did our next craft the girls talked about who they could give the finished products to, not just thinking of how they could use them themselves.  This is one of the best gifts I could receive, their understanding of giving and goodwill towards others.

All I thought the other night as I watched them paint was Linus as he told Charlie Brown "that's what Christmas is all about."

This morning, I have to say, I think that the "holly jollies" are creeping into my core a little more and more with every cookie I scoop.  Maybe I will even break out the Santa hat and make some cocoa!    

Messy

Life is messy, its roads are winding.  Still, I wouldn't change the curves, peaks, valleys or even the rest stops for the scenery has taken my breath away.

I never believed that time flew, in fact, ages ago, I swore I was never going to be old enough to get my driver's license.  Now in what seemed like a blink, my babies are 7, 5, and on the cusp of 2!  I just don't know where time goes.

Looking back on the unexpected journey of the past two years, I realize how much it has opened my eyes.  Not that I wasn't looking before, it's like I remembered to put my glasses on and savor the view more frequently.

Long and strange as this trip has been, the fragility of life and blunt reminder that time with my children is not infinite has made me reevaluate each day.  For a long time, I worried about what others thought about how we were raising our kids, and now, I don't.  I know we are doing the best we can with the hand we were dealt, one day at a time.  And that is ok.  

Never in a million years did I expect to find ourselves where we are today, but looking at our children, their smiles, I know we are doing something right.

I may not know what is around the next bend, and yes, sometimes that frightens me.  But just like in the past, we have continued moving forward, together as a family.  While I can't freeze this moment, it can engulf me, wrap me up, so when we turn back the clock to remember, I can say I was completely there, which has been the greatest lesson of this slippery, muddy road.  It might be dirty, but that's what the washing machine is for.     

Cake

Talk about cake!  In at 6:30 out by 8:15!  While getting tubes is still a surgery, it is almost crazy to me how quick and routine today was, a walk in the park, when many of our appointments eat entire days.

I can't say enough about the kindness of the nurses we have had at Children's Hospital for all of Cole's procedures.  Their kindness can warm a room, their compassion can fill your heart.  Today was no exception.

Knowing of Cole's exposure issues, our post-op nurse today was not only careful, but moved through the motions quickly so we could get out of dodge before the next round of patients were trudging onto the floor.  I can't even explain how deeply I appreciated this, as the petri dish of a hospital scares me more than any horror movie could.  Necessary risks are one thing, but lingering around beyond necessity where germs like to congregate is uncalled for.  Our nurse completely understood just from his chart, without a word from me.  Best part about today, she cared for him, and eased my worries with her attention and understanding.  To all the wonderful nurses out there, thank you.

Polar Express is just about over, and I need to keep my monkey calm today, so I am off to build one heck of a train track.  Hopefully this will capture his attention like it usually does until lunch.

Hugs to you all!
 

Sailing

Early start tomorrow.  Bag is packed and ready with things for the little man to do while he waits in his quarantined room.  Even got him a new Mater, a Doctor Mater.  It just seemed appropriate for another procedure at Children's.

This one is an easy one, tubes.  Between the girls, we've done this one three times already, so in that sense, we know what to expect.  Still, I'll feel better once Cole is out of the anesthesia.  As much as I dislike putting him under again, by doing so, we are able relieve one of his ailments, which, is a plus.

Looking forward to smooth sailing through surgery and a weekend full of snuggles.  Best medicine for both of us.

Diverged

Taking full advantage of the weather, Cole and I spent the morning walking through Chestnut Ridge.  While we were there, he fell asleep in the stroller, so I kept going.

Wandering off the path, crinkling through the leaves, I immediately thought of Frost.  The Road Not Taken, forever a metaphor for the routes I've traveled throughout my life echoed in my head.  "Two roads diverged in a yellow wood, and sorry I could not travel both."  Sort of like the fork between logic and emotion, both are inviting to travel, yet being one traveler, there is only one chance to choose the destination.

All day today, the poem has been whispering in my ear, echoing in my mind.  Thinking back on the  changing currents which have brought me to where I am today, I remembered I have and can endure any obstacle in my way to where I am headed.  So even with each hurdle, I know in the end, they merely make me stronger, make me push harder, making a difference.  This journey with Cole has been so different than with my girls, but has opened my eyes, seeing in much more vivid Technicolor, like Dorothy in Oz.

Regardless of the detours, I've always found my destination, even without a map for guidance.  And I know I will continue to find my way regardless if I follow logic or emotion since the roads I've taken have made all the difference.  

Quick

Quick update - all but one of Friday's tests came back late yesterday afternoon.  All were negative for exposures, which is a sigh of relief.   As long as the next test comes back the same we are a go for the tubes!

Let the stocking of the freezer meals for the weekend begin!  I am already excited for beef on weck soup after a long day at the hospital.

Latest

After two weeks home, Gwyn is finally able to return to school this morning. As excited as she is to go back, I must say, I am going to miss her being here during the day. From worksheets and crafting to decorating, we've kept ourselves rather busy this week.

Of course, we've also had our share of appointments to run to as well. In fact, Friday's was one we were not expecting. After noticing a few spots around Cole's chin that quickly exploded into hives on his cheek, immunology said they wanted to see him at the hospital. By the time they saw us, the spots had multiplied, spreading to his back. While they ran various tests, since we will not have any results until today at the earliest, Cole was started on a course of antivirals to combat any of the possible exposures he cannot fight.

 Unfortunately, all of these developments may need us to wait on this week's procedure.

In the meantime, we are still waiting for the other big results so we are able to determine if we turn left, right, or head straight on this path.  This never-ending uncertainty has been frustratingly long and one that it seems many people just don't understand.  The fact that doctors just can't wave the magic stethoscope as a remedy so he can be a normal kid is just reality at this point.  Then again, this is the season of miracles, where anything is possible.  Here's hoping for a call of good news today.

Miche Handbag Giveaway

Thank you all for reading and following.  To spread the word about my blog, I've joined a number of others to give away a great gift this holiday season, a Miche handbag.

Miche was started by a young homemaker who spilled something on her purse and came up with the bright idea of switching purse covers when something like that happens.  She pitched her idea and now has a successful business that has turned into an up-and-coming company.

To get an idea of how Miche handbags are different than any other bag out there, check out the image below and read Kara's full review here.

GIVEAWAY

One lucky winner will receive a Miche prima bag with the Tereasa shell {pictured above - $79.95 value}. This giveaway will end on 12/15 at 11:59 p.m. Eastern Time and is open to U.S. residents. Please enter on the Promo Simple form below.

Catching My Breath is not responsible for choosing or shipping the final prize.

To all my loyal readers, I thank you for being a part of our journey.  For those of you who are new, take a few minutes to catch your breath with me from the beginning.

Thanksgiving

Happy Thanksgiving!

While I have so many things to be thankful for, one of them is you.  If you are reading this, I am incredibly grateful that you are following our journey.  Your love and prayers bring me so much warmth on the toughest of days.

I strongly believe that all things happen for a reason, and appreciate all I've gained on this road.  From new friends to new perspectives, new hopes and even realizing my own strength, there are many glints of silver hiding in the grey.

Give thanks to God today for all the little miracles in your life and if you like, share them here, I'd love to hear what you are feeling blessed with in your corner of the world.  And again, thank you for being rainbows when my skies are black.  

Charlie Brown

Have you ever noticed that there are times when you are just getting a handle on one piece of news, another follows right after?

After grasping yet another road block, the phone rang.  This time it was the elementary school.  In my head I wondered which of the girls was sick.  While it was the school nurse, neither was sick.  Instead, she needed to alert me that another student had just received the varicella vaccine and was already back in class.

Immediately the mad rush of calls began.  Not only did I need to talk to immunology, but needed to find another place for Gwyn in case she was not able to come home.  Within twenty minutes arrangements were set for where she could be for the next week.  Then the wait for the doctor's call back began.

Fifteen minutes before needing to pick up the girls, the call finally came.  Fortunately, the virus would not begin to shed until the next day, so since the student had just had the immunization hours before and Gwyn was separated from them, the likelihood there would be an exposure issue was limited.  Unfortunately, that would not be the case after the first day.  It was possible we  would need to keep Gwyn out of school for up to two weeks due to the possibility of stow-a-way germs making their way from her to Cole.

My heart broke when she sat at the table after school, bubbling with excitement for her Charlie Brown Thanksgiving at school the next day.  I had to tell her she would not be able to go.  When I broke the news, she put her head into hands and sobbed in a way I had never seen.  She was a statue, silent, yet as her tears fell danced down her cheeks and around her hands, I felt as if I had stolen something from her.  It wasn't her fault she couldn't go to school, nor was it the other student who needed her shot.  It was the rarity that struck our family like lightening, unjustly stealing more of the innocence away from our children.

Of course I'd stage our own Charlie Brown Thanksgiving, but no matter what I could do, it was not quite what my five year old feels she had missed.  Her look of dejection was one I have never seen in my spunky Gwynnie girl.  Seriously, it was a rip your heart out and stomp on it sort of feeling as a parent.  

Now, I can be tough as nails when I need to be, sacrifice anything necessary and in our family's best interests, but when I think about my daughters and how this journey has impacted them, my heart aches.  Childhood should be a time of innocence and dreams, not a time for worries.  Yes, we have kept things as normal as we can, and I am so proud of the girls, always happy with what we can do instead of what we cannot, but I know they worry.  I just wish I could wipe away their disappointments as easily as an Etch-a-Sketch picture, giving them a clean screen without limits for the next day's adventure.

Today I tried my best to make the day the best it could be, even though we had to start with another doctor's appointment.  We went for a hike, found various animal tracks, and even saw some deer along the way.  In the evening, a few girls joined my daughters for their own Charlie Brown celebration, and even though Gwyn did not have the special placement she made in school, she had a smile on her face at the end of the night and said it was the "best day ever!"  Maybe I don't have to be so worried about disappointing them after all.  In the end, each day is a new day, a fresh canvas to paint.  And, I have to say, the girls are learning to make my signature fresh squeezed lemonade, just the right amount of sweetness to offset the sour.  After all, what goes better with jelly beans and popcorn than a tall glass of lemonade?

Gratitude

For those of you who know me personally, you may have seen my month of gratitude posts on Facebook.

As I keep reflecting on what it is I am truly grateful for, I constantly think about how lucky we are to live today, with all of the technology around us.

Here is an article about Texas Children's Hospital.  I truly cannot express how thankful I am that there are doctors using cutting edge technology to explore Cole's cells.

Even though we are still waiting for some kind of news, I appreciate the fact that we are in great hands.

Up

Thank you for your stories and warmth.

Just what I needed to keep looking up, keep moving forward.

<3

Tales

Give me inspiration.  Some days are tiring, especially when waiting.  I'm doing my best to keep on processing lemonade, but could use to hear some stories that are not my own.

You all know about my lemonade.  Every day I try to make the most of the hand we've been dealt, doing what I can to stay on the sunny side of things despite the unknown, despite changes I never anticipated.  Now, I'm not only sharing here on the blog, I am writing and working towards a dream I have had for many years, one I always thought was down the road.  Without Cole's mysteries, I may not have started to take this step because I lacked the right lemons for a refreshing beverage.
 
In the end, there is always a silver lining, yet when you are lost in the middle of the cloud, it's often hard to see.

Tell me about your "lemons to lemonade tales" or even your "God laughs when you make plans" stories.

Swimming

Draw has been sent to Texas.  We've taken one more step forward.

Just keep swimming, swimming, swimming, just keep swimming.

Cole is such a trooper, with yesterday's draw he not only rolled up his sleeve, he sat still and only let out a tiny whimper, so different from the wiggling and crying we've endured in the past.  Such a good boy - I decided he deserved a new train.

We are still waiting for the news regarding his IL10.  Our local doctors expect the call any day.  In the meantime, we have been combating the after effects of his ear infection antibiotics.  Love how one cure, creates havoc elsewhere in his little body.  Looks like the writing is on the wall for ear tubes.  We'll find out next week.  

For now, we will just keep swimming, even if it is upstream.  

Sands

It's always great to have a distraction when you have to wait indefinitely, yet all diversions are not created equal.  Our little man is plagued with yet another ear infection, one step closer to yet another specialist to visit.  At least my hands are so full that the last thing I've worried about is the ominous ring of the phone.

When it did ring, after my greeting, our immunology fellow bubbled that while she still did not have any of the expected news for us, she did have some news to share.  The study in Houston was finally ready to set up Cole's draw.  All of the normal levels in the study are in the process of being finalized, therefore if everything is set on their end, we will be headed to Children's at the beginning of next week.  In addition, she reminded me that Cole's case is being shared at a national immunology conference this weekend and hopefully between all of the experts attending, another may have more ideas to offer regarding his condition.

Even though I was nervously anticipating completely different information, this still gives me a sigh of relief as the sands of my hourglass pace themselves, steadily slipping south.  Time is not infinite, and without these puzzle pieces it's as if all I can do is sit by, helplessly unable to weigh all options, attempting to balance all the gray trapped within the monotonously silent grains.  With so much information on the cusp, I pray as it begins to speak our language, it shatters the glass, altering the urgency of fate, buying time.  

For now, I will take my little man's snuggles, as all he wants is to cuddle up and watch Woody.  Luckily there are three Toy Story films or I might really start to dislike Tom Hanks and Tim Allen!

Cooking

Patience is easier when you are busy.  Glad for all of the Halloween/birthday festivities yesterday to keep moving and not focus on the phone.  

Now that the excitement has silenced like an empty arena, I'm back to cooking.  Yes, I said cooking, which for me, is better than baking.  Some people clean when they are stressed, me, I'm a tornado in the kitchen.  Once upon a time I would spend the day curled up with pen and paper, but that's hard to do when your toddler is scaling Mount Everest and K2 without his safety harnesses in the living room.  However in the kitchen, I can distract him as he looks for good hand holds on the rock wall drawers.

So today, I continue to wait and I cook.  It is a sauce and meatball day, some for dinner, some for the freezer.  Aromatic all day and end result is fabulously tasty, certainly a way to stay busy and positively productive while willing the phone to ring.

Before the house stirs I need to hide all the loot from the kids' "treating" last night and strategically place our guard dinosaur to keep Cole from the top of the cupboards looking for candy.      

Still

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

Crossed

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!

Foreshadowing

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.

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.  

D-Day

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.

Scheduled

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.

Excited!

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!  

Small Things

You may never realize the impact even the smallest of actions can have on someone else.

To the those of you who have been there for us this past week, thank you.  You just don't know how big the regular conversation over coffee or the phone call really is.

Today, try to do one small thing for someone else, just one.  After all, it is all the little things that add up.  I know exactly how I am paying kindness forward today, do you?

Delving

The past few weeks have literally been jam packed, like a tennis match, bouncing from one end of the court to the other.  Finally, we are falling back into the familiar swing of routine, a sort of comfortable predictability for the time being, at least until the next shoe drops.

Both girls have settled into their classrooms, loving their teachers as well as being with old and new friends.  Second grade is bringing new challenges to the table for Paige, while kindergarten is exactly what Gwyn had been hoping for.  Honestly, we couldn't ask for a better start to the school year!

We are still working to combat Paige's night terrors and migraines.  Luckily, nothing related to her ailments was found during her neurological assessments.  Nevertheless, last week we had a night where she was up every twenty minutes.  The next morning, she didn't remember any of it.  I, on the other hand, was beat.  I'm shocked she does not wake up exhausted!  Now we are trying yoga before bed as a way to relax her body and mind.  I am hoping I reap the same benefits she does.  Nothing eludes sleeps more than when worry wrestles with your head before bed.  Much like me, Paige cannot tone down the thoughts from her day when it is time to sleep, instead whatever concerned her during the day continues to stalk her mind in the evening.

In terms of Cole, we are in a calm period until next week when the cycle of appointments begins once again.  Ultimately, we did sign the consent in order to place him in the nk cell study.  Our hopes are that this will provide not only us and our doctors with pertinent information as it becomes available, but that by being a part, we are able to provide information that can help physicians of other patients who are also plagued with issues like Cole's.  Some where, some time, I know there will be another family, like us, facing a journey and choices beyond anything they ever imagined, turning their lives upside down, their paths far off course.  My biggest hope is that the researchers are able to make progress from what they learn from Cole, that his cells can be the difference for someone else, that something good will come from all of this.  For now, we wait for the next piece of news, enjoying every second of play until we are faced with our next steps, hoping we travel the right trail, even if it is an uphill climb.

Well

Very quick update, both appointments went well today.  More details to follow when I have time to delve into details.  Thank you all for your kind thoughts today.

Mighty

While I'm anxiously awaiting both Paige and Cole's appointments tomorrow, my thoughts can't help but drift elsewhere.  Despite where we are in our journey, despite the good days and the bad, I try to remember that there are other people with similar struggles, some that may be much harder than ours.  I can't help but think of other kids, of other families, dealing with their medical mysteries and odysseys, especially one family across the country.

One night I happened to check the feed from a Crohn's forum I follow on Facebook. There I found a post from a parent sharing the latest findings regarding their son's IBD and IL-10 studies.  My scanning became focused as soon as I realized these were the studies our gi physicians had discussed with us and our immunologist had been looking into.  Immediately I sent a message asking the writer to please contact us.

Within days, Mason's father sent me a message explaining their situation as well as their willingness to help us if they could.  Not long after, Mason's mother also reached out to our family, offering to talk anytime.  She did this even though she is sitting beside her son as he regains his strength from his bone marrow transplant.

Social media has given me an opportunity to not only share our experience but connect with someone who has traveled in our shoes.  We have been able to cheer for Mason through his Facebook page and connect with his parents through the messenger.  I am asking you all to please, keep this family in your prayers.  Mighty Mason and his family have endured quite a bit on their road.  Their journey has touched my heart, and their strength and kindness inspire me as my trek with Cole continues.  Please take a moment to let their story touch you too.

New Year

The air in this house is electric this evening.  After one unforgettable summer it's time for school.

Both girls struggled to fall asleep tonight.  Before I went in to retuck them for the third time it was funny to listen to them chatter back and forth about school.  Paige was giving Gwyn the rundown about what to expect on the first day of kindergarten from a kid's perspective.  The sisterly talk between them was just really sweet.  When I went in to get them settled, Paige confided that she had some second grade jitters.  She just was so worried that her teacher would not be nice and the homework would be hard.  For a second I almost laughed, yet both are valid concerns for a seven year old to have.  After the reassurance that teachers really are nice if you do your job as a student and the fact that her mean mommy made her do tough homework throughout the entire summer so how could anything from school be that bad, she was reassured that second grade would be just as awesome as first grade.  Not long after, both girls finally drifted off to sleep.  

Like them, I've struggled to fall asleep the past few nights.  Even though I have been tired, even fallen asleep on the couch, when I have gotten to bed, I have just lied there, awake.  Then, I don't know if this has happened to any of you, but once I'm out cold, I've been trapped in one of the most exhausting dreams.  When I'm worried or stressed, I usually have one of two dreams, either the restaurant dream, where I am working, totally slammed, and just cannot keep up with what is going on.  The other is the back to school dream, where I'm just frantically trying to get everything ready.  Lately my dream is different, I have been juggling Cole and all his gear at the airport before being bounced like a super ball from appointment after appointment.

Perhaps my panic dream has changed because of where I am these days, or because of what is ahead.  While we knew we might be headed somewhere else, now that it is finally in motion the entire situation feels surreal.  Late Friday, we received a call from our immunologist's office.  They had finally heard from the expert in Texas regarding Cole's tests.  He wanted to look at Cole;s blood himself and was sending us a consent form of some sort, we were to read it, then, come in to discuss and ready to sign in a few days.  Unfortunately, the fellow could not share any additional information with us as she was merely calling to let us know it was on the way and to clear our schedule for a particular time.

Throughout the night and next morning I restlessly checked my email, digging through messages as if I were looking for treasure.  Finally, I decided to check once more before heading to bed.  There it was.  Due to the rarity of Cole's condition, he's been invited to join a study regarding his nk cell deficiency.  A great deal of this test will look at the various pieces of Cole's DNA in order to understand the variables in his genetic code causing his condition.  Luckily, from what we understand, the researchers will look at all aspects at this level that could be related to nk cell function and share necessary findings with our physician.  We will not have to wait for approval for various studies, just the information.  According to the consent, we will have to travel, however we don't know when or for how long.  Yes, we have a few questions, but our boots are on, ready to hike down this new fork in the road.

Pathology does not lie, so I know Cole is not 100%, yet at times I just don't believe all of this.  More than ever, he has seemed just like my other kiddos, normal.  Receiving the consent just reminded me of his reality, that no matter how typical some of our days are, he is one special little boy.  I'm hopeful that this new path will not only give us answers and options for Cole, but hope these researchers learn enough to make a difference for some other kids and their families so their journey is a little lighter.

It's going to be a week of many beginnings here.  Each one is full of promise.  I'm ready for them all to be outstanding!  

Carpe Diem

Carpe Diem.

That is where I am today.

Join me.

Lemonade

Long weekend.

Cole was plagued by fever, his only request, "train." Needless to say, much of our time was spent rumbling our way to the North Pole on the Polar Express.

Luckily, it is merely an ear infection, so we are just trying to keep him from gagging on his antibiotic. Unfortunately we are dealing with a new side effect. With his abhorrence of the latest drug, Cole is now refusing all his other medications, which has ensued in an exhausting chase and struggle three times a day.

In the meantime, I've been thinking about the magic silver bell and the fleeting nature of childhood innocence. As a parent, I have wanted my kids to have lasting memories, as well as traditions that they will carry on to share with their children. Throughout the past two years, as we have had to make changes, I have often wondered if our situation was taking away from our kids' experiences, stealing part of their innocence, having them grow up before they needed to. Believe me, at the beginning I wrestled with this idea, and a self-imposed guilt that I was not accomplishing my personal goals as a parent. Then, when the girls asked if they could have a lemonade stand to help kids like Cole I realized, while our situation is unique, it has not robbed the girls of anything, but given them the opportunity to truly be empathetic, not egocentric. Not only is their compassion growing like the Grinch's heart, but I can see they have learned a great deal about making lemonade from lemons as well as the unconditional love of family. That above all, we will do anything for each other, no matter what the price, we will always be there for them first.

That I think is one of the best lessons I can teach them as a parent, and I hope if they ever have to endure a hardship as parents, they look back and remember how Nick and I managed. Hopefully we are providing a good example to follow as we continue to forge ahead, chugging along our track.

Processing

Yes, as a handful of you know, we have some answers. I have been trying to take it in and process where we are before writing.

Although we have a clue, in many ways, we still know very little. Basically a genetic mutation was found in CD-16 in one of Cole's blood marker tests. Doctors here believe this is the root cause of his nk cell dysfunction, yet they are waiting for further discussion with the consulting expert. As it was explained to us, at this point in time, Cole is only the eighth individual found to have this mutation. Keep in mind, many findings in immunology appear like this, as some of their studies are fairly new, with novel discoveries every year.

So far, this means nothing different for Cole. He is still very susceptile to the herpes class viruses like chicken pox or mono. For now, until we hear from Texas, his course of treatment is the same. Down the road, he will most likely be on an anti-viral regime to help ward against these invaders. Bone marrow transplantation is also an option, yet not what our phuscian is recommending at this time.

Since CD-16 has no connection to Cole's gi issues, our doctors are still persuing the IL-10 testing. Thanks to a very kind family across the country, our doctors have been able to contact the expert treating their son with the IL-10 receptor deficiency. Hopefully, this contact can offer our experts other avenues where they can explore their hypothesis since there have not been answers regarding studies where they have requested Cole to be a subject.

Clearly, we have had quite a bit to absorb this week, not to mention the ripple effect of choices and various emotions that are part of the package with this type of news. In the end, not much has changed, we've been doing what they've recommended now for a year, so this isn't really a new normal anymore, just our normal. Which, as long as the kids are thriving, I'm perfectly fine with.

Today

Today should be interesting to say the least.

After finally tucking myself in after midnight, Paige was still awake with Nick. I have about ten minutes before I need to wake her from her sleepy slumber. She is the last of the kids I like to have deprived of her rest, she is downright GRUMPY! However she was thrilled that a doctor told her to stay up as late as she could just this once. Easy, successful prep.

For years, Paige has woken at night. Not just a quick stir, a someone is stabbing me, terrified screaming, kicking, thrashing kind of nightmare wake up. The worst part about them, is that she does not fully waken, and does not remember a bit of it in the morning.

Initially, we were told it was night terrors, she would grow out of them. Once she started yelling about her legs, the belief was they were growing pains, and they wouldn't last too long. Now with the onset of her migraines, the neurologist we were sent to feels there may be a connection, thus the tests this morning. While she knows what to expect, I know she is nervous, especially since she wants to bring Pooh Bear with her. Hopefully he can go with her.

When she is finished, I need to come home and trade kids.

Cole needs to go to see immunology at the hospital. We had an appointment for this Thursday, but since he developed chicken pox like bumps across his torso, thighs, and a few other random places, in addition to a fever, they wanted to see him immediately, with the first appointment available we go today. We were given a list of reasons to go directly to the hospital, but so far he seems ok, irritable, but ok.

Very hopeful for a few things today. First, that this is not chicken pox. Secondly, that we finally have word from Houston as to what direction we need to move in. We've had test results for almost a month, yet not the analysis, so with any luck, today is the day the next leg of our marathon will start.

Time to play my role as mommy alarm clock! Have a great day everyone.

Savor

Patience must be something I needed to practice.  It has been two weeks since our latest results were sent to the consulting expert and we've yet to hear anything.  I called our doctor last Friday, but they were also hearing crickets.  Today is my day to call again.

The toughest part about it all is that we are stuck at an intersection with no map and no idea which direction to turn.  I guess we will just dance under the streetlight.

Each day I am fascinated by each of the kids. Paige, who I still cannot believe is 7, now fiercely scoring goals at soccer practice instead of picking flowers.  Gwyneth, brimming over with excitement to start kindergarten, where I know the transition will change her, make her a much more grown up five than she is here at home. And of course, Cole, whose emerging sense of humor, not just through movements, but in his little voice leaves us all laughing.

So, while I still have nothing to share, I am taking in the quiet moments in between all the noise of our saga, savoring the sweetness of our family one breath at a time.

Special thanks to our friend Justin Huett for the awesome pics of the kids by our fire last weekend.  Your talent with a camera is amazing!

Grateful

It breaks my heart to know there is another family in our shoes.  At the same time, I am grateful they have been able to share so much of their journey with us as they are a few steps ahead of us at this point.  While it might turn out that we are on different paths, so far there are similarities within our travels that give me hope that Cole is not an anomaly and someone will have some answers for us.

About a month ago, someone posted information about their young son who sounded just like Cole on a Crohn's post that I follow.  As I read further, they discussed how the presentation in the intestines was like Crohn's but instead after their IL-10 test, found to be an immunodeficiency.  This is the same IL-10 test our g.i. doctors would like run on Cole, however due to its novelty, have not been able to run.

Since their initial post, I have been in contact with this family.  Their journey has been filled with challenges and hope.  Their son, now two and a half, is preparing for his bone marrow transplant.  Still, as they sit with their little one in the hospital, this family has been taking the time to reach out to us, share their story, and communicate with us about their doctors and tests, all while asking us about Cole.

Please, stop and think positive thoughts for this family and their son today.  Their strength is astounding and I am so thankful for their support and kindness to us as they embark on such a difficult leg of their odyssey.    

One Down

Today we had our follow up with the neurologist for Cole and initial visit for Paige.

Good news - another specialist down for Cole!  Woo Hoo!  His falling was attributed to the turning in of his feet.  Now that he has had a bit more practice as a walker, runner, jumper, and general mover and shaker, he is doing much better.  He still falls, but it not a neurological issue whatsoever!  In this I am thankful.

For Paige, as her headaches have begun to intensify over the past few months and have started interfering with activities and sleep, her primary decided it would be a good idea to see the neurologist as well.  At this point based on Paige's descriptions to the doctor as well as the exam, everything appears to be migraine related.  Since she does not recall a great deal of her sleep disturbances, the neurologist is going to run an MRI and EEG to investigate further.  The one thing I am not thrilled with at this point is his desire to place her on a very low dose sleeping medication prior to bed.  I understand it will help a headache from starting in the night as well as to quell any terrors, but I am reluctant to medicate when there may be another way to help her. While I would love for her not to wake the way she does in the middle of the night as it is terrifying, yet I worry about unnecessary medications.

I guess we will wait to see what these tests have to say and just enjoy the fact that we can cross one more office visit off our lists for Cole.

Antsy

Wonderful hike with the kids and dog this morning followed by laundry and pool wall scrubbing.

Funny, I feel like I am a middle school girl, willing the phone to ring the day after the dance.  Logically I know it may take a few days before we hear anything since the results were just sent to the expert on Thursday, yet I'm antsy.

There is much weighing on the information this call is bringing.  We have placed a great deal of trust in our doctors, just hoping they are ready to share their expertise sooner than later!

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.

Date

We do have more news, and I will write a bit later tonight.  For now, Gwyn and I have a date for the movie in the park this evening, just the two of us.  Well, we are meeting up with some friends, but she's looking forward to some one on one time with me, as I am with her.  Enjoying the moments as they come.  Do the same this evening my friends, the news will still be here.

Mixed

Mixed news yesterday.  

CD-107A blood marker enzyme levels low.  Unfortunately, they can not explain the reasons why or what it could indicate at this point until they have the results from another test needed for reference in regards to nk cell function levels.  Then our doctor here needs to consult with the expert at Baylor before we will know more details.

I will share the rest soon, just need some time to relax this nap time.

Hugs to all.

Article

Love seeing hopeful news!  Check out this article in The Seattle Times.  http://seattletimes.nwsource.com/html/localnews/2018756084_immunetransplant24m.html#.UBNMEHA4vM8.facebook

Medical advances just amaze me.  Hope this trial goes well!

Latest

While I've never been able to completely turn off and relax, in the warmth of the summer breeze I've been able to steal a few carefree moments.  Splashing with the kids in the pool, hanging out roasting marshmallows by the fire, cheering at soccer games, beach reads, and just chatting with friends on the patio have brought me a sense of calm in our storm.

The further this road winds, the more challenging its detours become.  It's tough to explain, and ever harder for those on the outside to truly comprehend.  I'd never wish this situation on anyone, no one deserves the frustration and heartbreak.  Yet I ask you to consider for a moment, where do you begin to share when the saga seems as complex and bizarre as a soap opera plot line?  How do you make long term decisions when your impending fates hang upon the analysis of a few molecules?  What if your fork in the road moved you so far away from everything you toiled to build?  How would you react when faced with unsolicited criticism for trying to take the best direction for an unknown tomorrow?  How do you wrap your head around the fact that answers are still uncertain and pending, let alone rationalize the reasons to others who ask and just can't comprehend themselves?

These are just a handful of the tornadic thoughts whipping around our heads every day.  So in asking how we are, we are good, just know if we seem distracted, there is a great deal on our minds.    

Clearly our lives have changed, and despite the frustration uncertainty brings, there is something soothing about surrendering yourself in the acceptance of what cannot be changed.  At times I wonder where I would be if all had gone according to my plan, then I stop and can't help but trust that this is the plan.  

As we were told our results were still not in, we were also reminded just how specialized, not to mention complicated, Cole's case has become.  The multitude of twists in our journey still does not cease to astound me when I look at where we've been.  While we await these results, immunology is looking at programs in both Toronto and Boston regarding the IL-10 receptor deficiency and hoping Cole may be a candidate for one of the studies.  Even though there is an option of sending a specimen to an expert in Germany, there is doubt that our insurance company will approve the order.  

Once again, we wait.  

In the meantime, during the rain, we had one heck of a Christmas in July yesterday, filled with cutout cookies, cocoa, The Polar Express, crafts, and carols.  Giggles and smiles all around, especially when our truck obsessed little boy kept insisting the train on screen was a truck.  Guess we need a in-train-vention from our friend Jackson!  

Looking forward to another day of calm today, playing school right now and hoping the sun peeks out so we can play outside, maybe even take the kids on a new adventure!  

Idea - Maybe....

Many of you reading know the journey we have been on.  Those of you who know us personally may understand how this has changed us, then again, you may not.

In all this, I have had a nagging need to do something, not just for our family or Cole, but for others in situations like ours.  Yes, we did the Crohn's walk, which will be an annual tradition, but I need to do more when I am able.

This is where I'm asking my network for help.  I have an idea and need to explore how to get it off the ground.  Basically, it's to help parents like us, giving them a moment, a few hours to catch their breath, as they navigate the rising and falling squalls that their new world has become.  While you always carry the situation with you, taking a step back, a breath of fresh air, can recharge your batteries more than you know.

However, I have noticed that few of us in these types of scenarios do this, especially with our spouses, for one reason or another.
 
I want to change that.

There are support groups to talk, which are tremendously beneficial, but in this case, my goal is to provide couples an opportunity where they have a few hours to turn the volume down from their lives, have an afternoon or evening out, and recharge.  I know many may say they can do this themselves, but again, many will not, be it care or cost issues.  As much as we have tried to keep things normal for our older kids, we are tired, and don't often do the same for ourselves.  Yet, while infrequent, the dates my husband and I have gone on have given us so much, not just a few moments away, especially since we often talk about the kids as well as all the medical stuff, but a strengthening in us.  And I know any parent can use this, but once you've begun to endure situations creating endless worry, it is a new ball game, one I hope none of you need to stomach.

So, if you have any tips for me, please email me, or message me.  Is this a good idea or not?  I realize this may just be a pipe dream, but in my head it makes sense as a way I can help others manage to take their own deep breaths, then continue with their marathons.

CBC

First normal hemoglobin level today!!!! :)

Half Full

While it may not seem like it, I am always trying to look at the full part of my glass.  Well, this morning, my coffee cup!

Cole is actually drinking his instant breakfast as I type, instead of throwing it at the dog and he is up 10 ounces in the last week and a half.  Although he's still off the charts, he's moving in the right direction.  I'm not exactly sure what he's liked this past week but at least I've cooked or baked some winners.

Vials sent, sealed, and delivered fine.  Fingers crossed, blood marker results from Philly could be in as early as this afternoon.  From there I can only hope if the anticipated genetic tests are ordered the paperwork goes smoothly and approval is swift.  Cinci blood work will be a little longer, but I can be patient for a week, that isn't all that long these days.

Miraculously the car repair was not as bad as we feared, thus no more worries of being stranded on the side of a hot road with three kids.  Luckily, Nick's got a great partner at work who he happened to be carpooling with all summer, so there was no scrambling for a vehicle for our multiple medical commutes this week.  

In addition, it has been nice to spend some time outside in the sun with some very healthy friends.  After a long lonely winter, with little more than phone calls, a few of the girls' friends have come to swim.  They've had to stay outside, just in case, but Cole's afternoon nap has given the girls a little bit luxury where we have not had to say no for a change.  Due to my own appointments, they've even had a wonderful day with kids away from home, thanks to my friend Lori, brave enough to take them to art class, the playground, and then let them invade her house for the day with her own two kids, even though my #2 can be quite a challenge with hers.

We are still hopeful that I will be able to get back into my classroom this fall.  It is such a challenge to make decisions when you are still waiting for information.  I am so fortunate to be in a career where I have been able to take as much time as I have, and am optimistic to jump right back in with my colleagues, who I miss tremendously.  Again, I know I have changed over this journey, and know these individuals will treat me the same as before, which is all I want.  I don't want to be looked at as a sob story, because you know what, I don't feel sorry for myself.  We've welcomed one really cool kid into our family and he has opened our eyes to a different world.  I would never change that.  He just happens to have some hurdles to jump and needs our help, that's what parents do.  The team I work with is amazing, like a family, and I've been lucky to have them as co-workers and friends, and love that when I see them, it as we are picking up where we left off.  Looking forward to it on a regular basis somewhere on this road.

As a very proud, independent individual I have always wanted to do things myself because I could, and maybe I just don't want to seem weak or dependent.  I know many of you have generously asked what you can do, and honestly, I believe we are doing ok.  But the few times I have needed something and was just too darn stubborn to say anything, I am lucky to have people who just said they were doing this or that, whether watching the kids, dragging me out, understanding I was too tired for plans, or volunteering to take me to appointments for myself.  I am so thankful for you, and for those who really want to help, don't worry, I am not so shy or proud anymore that I will not ask, but am saving my requests for the days when I just may not be here to help if and when we are finally sent to Houston or Boston.     

Right now, your love, friendship, support, and understanding is all I need.  Knowing what I have in so many of you and the laughter of my children is what keeps me smiling past the rough patches.  That and, while it is cold, my coffee cup is still half full.

Good, Bad, and Ugly

The Good


After eight vials were drawn the blood has finally been sent.  Crazy to know by now it has been delivered to three different hospitals.

The Bad


Despite the nurse's rapid delivery to the courier, our wait still moves as slow as molasses!  At least the blood marker tests should be back in just a few days, Monday at best.

The Ugly

Even with these tests, the markers may merely indicate the need for further investigation, AKA, more testing.

When the day's events exhaust all my energy I know recharging isn't far away, even if it is short lived.

Thank you all again for your constant love and support.

Long

Doing what I do when I'm stressed - cooking.  Planning to make spanakopita and cannolis.  I know, odd combination.  But one I love, the other should put some more meat on Cole's bones.

After spending the morning at the hospital, supposedly for blood tests, we were sent on our way.  According to the technician, there was an issue with how the specimens were to be transported that needed to be worked out before the draw could be done.  Really?  They've been coordinating this draw for two weeks, we have our out of network approvals and were told to show up today.  We have been jumping through hoops for a year now, still with no end in sight.  At this point if I could wave a wand to get answers other than "we need more tests" I would.  Actually, I'd settle for driving the blood to Philly and Cincinnati myself!

Honestly, my overall frustration level at being backed into a corner where I can do so little for my child is beyond words.  I know and appreciate that the doctors are doing what they can, especially by seeking other experts and looking into all their suspicions, but inside I'm irrationally screaming because when it is a child it nothing should take this long.

Needless to say, we are still waiting, not for answers, but for the draw itself.  Then the real wait starts.  For this moment, while my girls play and my boy sleeps, I will cook.  Hopefully the kids approve of today's treats.

How?

Recently a friend's mom asked me how we were able to do what we do from day to day.  Without blinking I told her, we just do, one day at a time.  Doesn't everyone?

Still, her question has lingered in the back of my mind.  How have we been able to stay sane throughout this adventure?

When I look back on where we've been, aspects of how life has changed, and the uncertain road ahead, to be honest, there are times I am overwhelmed.  I guess that's why I try to look at each day as it comes.

Appointments on the calendar have dictated our new commutes, while blank dates free us for walks and play at home.  Not as many exotic adventures as in the past, but, on the bright side, nap time is usually uninterrupted.

Our family solitude has been lonely at times, and declining good times with friends or family has been disappointing, particularly for the girls.  Yet, summer's arrival brought soccer and swimming so they are once again satiated with shin guards and sun.

Regardless of where we are, the bustling of each day often leaves me drained, absolutely empty, needing to recharge.  These evenings I just can't find the strength to explain the latest tests, flares, or tantrums, even on the blog.  Instead, I escape to the novel, typically for just a few pages, before I surrender to sleep.

Somehow, with each sunrise I open my eyes to a blank page, a fresh canvas for the day to envelope.

Taking each day as it comes is easy, ditto for doing what is best for my kids is, yet there are days that feel like someone hit the pause button on our family while life around us kept moving forward.

Having a child with any illness changes your world, but it is difficult to understand or fathom how until it actually occurs.  No one expects or hopes for this path, we certainly did not think anything like this could happen to us.  In the end, our careful and cautious planning did not immunize our trail.

Things happen for a reason, yet I've been lost in trying to comprehend why all of this has happened to our son, or any young child for that matter.  In the back of my mind, I frequently have to fight the bitter urge to let this detour leave me angry.  Instead, at these times, instead of going day by day, I take in one moment at a time, reminding myself just how lucky we are.

While our "norm" has changed, our family is strong.   The girls have learned more about compassion, sacrifice, and absolute unconditional love because of this ordeal.  I've taken a step back, truly seeing and cherishing what is right in front of me; right here, right now.  

So how do I do what I do?  It's easy, I chose to be a parent, and in that choice, anything that comes along where my kids need me, especially when they are young, is my responsibility.  If that means blazing a new path, to weave back to the highway, then so be it.  I've always been up for traveling the less traveled route anyway, the untamed scenery is breathtakingly beautiful.

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.

Mystery

Being a regular anywhere is comforting, even in a specialist's office.  We walked into the g.i. clinic today, and were greeted warmly and personally by the receptionist, the norm for us these days in this particular location.  It's funny, when the practice realized Cole's condition was more serious than their initial thoughts, we became family.  Now, each visit is like a reunion, recapping time during peek a boo games with Cole, followed by the task at hand.

After we ran the gamut, the g.i. fellow beamed with pride as he told us about a recent conference he attended where he presented Cole as a case study.  Not only did the images from the scopes baffle the community here in Buffalo, but the they have also puzzled the national g.i. community.  Even the lead g.i. physician agreed that as they ventured through the meetings, there were very few suggestions, only questions regarding Cole's case.  Physicians here still feel that what they are seeing is something more than just Crohn's yet they cannot put their fingers on exactly what it is.

So, once again, based on a suggestion from the conference, we thought we would be heading towards new tests.  However, for now, we've hit a roadblock.  Our immunologist stated she would love to run the labs for us, unfortunately the current study is only being looked at in mice at this time.  Hope came in her next breath as she discussed the advances being made in immunology and how kids who don't quite fit in any given mold are being given their own molds, where others may fit as well.

For now, Cole is still a mystery.  Unlike the frustration of a Rubik's Cube, no matter how many twists and turns I manipulate with Cole, his giggle and smile make moving forward as easy as breathing.

Recovery

The other night I think I melted and dissolved into my bed.  Seriously, it had to be the soundest sleep I have had in some time, nothing rattling around in my head like a tennis match keeping my mind entertained instead of slumbering, just good solid, refreshing sleep.  I guess I must have been pretty tired since it's a rarity that I can hit the mute button to silence my brain for five minutes .

A week ago Cole went to the hospital for a routine orchiopexy procedure.  As soon as we arrived we were whisked away from the crowded waiting room into a private room due to Cole's limited immune function.  This put me at ease since our last visit to the hospital was the er, and there, despite our explanation from immunology, we were still sent back into the unknown environment of the waiting room.

During the pre-op procedures our nurse nonchalantly stated the baby had a murmur.  Immediately, like a reflex, I stated he did not.  She listened again and said, "No, I definitely hear a murmur.  Haven't you been told this before?"  Of course we had not.  As everything else looked well, we were sent to the surgical unit to meet with Cole's surgeon and his anesthesiologist.  Once again, they asked if we had been told about this murmur before and once again we stated we had not.  After a few different physicians listened to Cole's heart we were assured it was safe to go ahead with the surgery, just that they would use a type of anesthesia like an epidural once he was asleep instead of what they initially had planned.

After another explanation of exactly what the surgery entailed, we walked the last ten steps to the surgical door snuggling our unsuspecting son before he was pried from my arms.  As they turned the corner with him we could still hear him frantically calling for me down the hall.  There is nothing that can break your heart quite like your child calling for you and not being able to go to them.  In many ways it is much like this whole journey, I can watch him and comfort him, but in the end I can't do much of anything to fix what is wrong, no matter what I do.

Nick and I decided to head down to grab some coffee, since we had at least an hour and a half before Cole would be out of surgery.  To our surprise, when Nick's cell phone rang an hour later, we never expected the hospital on the other line.  I swore my heart stopped as I waited for some indication that everything was ok.
Seconds later we were headed back to the surgical unit, but just to recovery.  The surgery itself was not what the doctors had expected, and since there was little to reposition they finished much earlier than anticipated.  

Unlike after his colonoscopies, Cole was awake from the second I walked into the recovery room.  Despite the fact that he was awake, he didn't seem to have a care in the world as the morphine was working its magic.  After a few hours of nothing but cuddling we sent on our way home, with the reminder to follow up not only after the surgery, but with a cardiology group as well.

Now, a week later, Cole is doing fine.  In fact, the night of his surgery he was right back to his antics, climbing every piece of furniture he could pull himself up upon.  While we had a few restful nights we have also have had a few sleepless nights as well.  Nothing too far outside our realm of normal these days.

We were also lucky enough to get into see the cardiologist and learn the murmur is merely functional, he will not need a follow up, at least not with cardio.  Since Cole has a tendency to fall even when he is standing still or sitting, and there is not a cardiac related explanation we are now headed to see a neurologist.  Hopefully this visit will be as simple as our experience with cardiology.

Once again, thank you all for your support this past week.  It has been long, but filled with love, the sweetest acts from the girls to their brother, and of course hugs of gratitude from one very happy little boy.