Bursts -2

After about an hour on the phone with our local immunologist, my head was spinning.  At the end of our hospitalization during the flare, gi had consulted her about their new treatment plans for Cole.  In turn, she needed to discuss all aspects of the next steps with Dr. Orange in Houston.  As the expert, he was the one who would really understand how all his Crohn's treatments would impact Cole's immune function.

In terms of the 6mp, we no longer had to worry about the repeated blood screens and frightening warnings, as taking this drug is not an option for Cole.  The  possibility of bone marrow suppression could be devastating, leaving him at greater risk for infections from the very class of viruses his body cannot combat.  In his opinion, of the suggested courses, Remicade infusions would be the best route at this point.  However, Cole would need to also be placed on an anti-viral regimen to add an extra line of defense since the treatment is an immunosuppresent.  In addition, Cole would need a prophylactic antibiotic since there are risks of mycobacteria infections doctors are concerned about as we take this path. 

From there, we learned there was other news.  After looking again at the CD16 studies, they ultimately determined his cells did not meet the characteristics necessary to confirm the marker findings from the fall.  As a whole, they did meet some of the criteria with cytoxcity but varied as the nk cells cannot function with Cole's B cells to fight disease cells.  

With all the developments regarding Cole's gi issues over the past few weeks, and the impending commencement of the medical infusions, the doctors in Houston are doing their best to move quickly to find the underlying cause of his nk cell dysfunction.  As wonderful as our gi physicians are, the fact that they have slight doubts that this is really Crohn's makes me worry about using the harsher medicines on my little guy.  If he truly needs them, of course, but if he really needs something else, I don't want to subject him drug infusions if ultimately they are not in his best interest.  Our immunology team shares this concern.  Which is also why they are screening Cole for every known primary immunodeficiency that has been ever been diagnosed.  They are optimistic about a recent discovery called STAT1, which may be where Cole finally fits.  Of course, there is also the slight chance Cole is a new pi himself.

As researchers move forward in their continued study of Cole, they have also asked us for more blood, not just from Cole, but Nick and I, as well as the girls.  This is for another study of whole-exome sequencing and genome mapping.  By creating our genetic family tree they can compare and look at every last genetic deletion, mutation, and familial pattern they want.  In the process, we have to choose how much we want to know about their findings that may be unrelated to Cole's disorder, but our own make up.  Never would I have elected to know about what my children or I were predisposed for, yet with the information literally to be at the tips of my fingers, it is tempting to know.  Of course we need to learn all we can about Cole, and if the girls have anything underlying related that may be lying dormant, waiting to appear, we want to know.  But for myself, I'm not so sure.  

For now, we are getting ready to tell the girls they need to go to the hospital for some tests.  I think Gwyn will be fine, but for Paige, who is deathly afraid of needles, I am apprehensive about her reaction.  Nick thinks she might need a kitten to avoid a repeat of the 2010 flu shot fiasco.  Don't worry, I will post pics if we have a new fuzzy friend here!  To be entirely honest, I am grateful he will be there to help, since I don't think I could do this round of blood work with all the kids on my own.

For now, my mind is tired, reading about all the various drugs and their side effects.  Learning what to expect with infusions, and thinking about all the implications of the next set of results has been draining.  As surreal as this has felt, as often as I wished to wake up, appointments remind me it is all so very real.   At the same time, I am fascinated every day with all the leaps and bounds in medicine.  It makes me want to be the one analyzing the cells and unlocking the new puzzles.  Wonder how much school that would take.  So thankful for all of our incredible teams here in Buffalo, and from around the globe, they are our heroes and they may not even know it!

I hope I have explained clearly enough about where we are on our road, and that it is make some sense to all of you who love and support us.  It has been complex, yet the complexity seems to have an infinitive means of expansion, which can be hard to follow.  For now, the information we've been waiting for is so close we can taste it.  We are hopeful and pray we will know more of what it all means and what is best for Cole very, very soon.         

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.

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.

Pictures

What a way to end winter!  Like a blanket on a cold day, we have been engulfed in warmth and have shaken the chill of winter from our bones.  This week has just been amazing!  From a picnic in the park, followed by countless walks, as well as chalk drawings and sprinkler runs it has been the best March I can ever remember!

Despite all the fun of the week we also had a number of appointments for Cole as well.  We started Monday with a seven vial draw.  Initially the immunologist told us her test results would take a few weeks, however they have already contacted us.  Unfortunately, Cole's tests show he is "naive" to all of the viruses they were looking for.  In other words, he has never had experience with these viruses, thus has not made any antibodies against them.  The hope was that the tests would show some antibodies against one of these viruses as it would indicate Cole's ability to handle these kinds of infections without serious problems.  Since they do not, we will continue keeping our man in his virtual bubble, prolonging the avoidance measures we have been employing for a while longer.  We'd rather be safe than sorry since it has been explained that any possible contraction of these illnesses could not only be serious, but life-threatening for Cole.  The sooner we know about any likely exposure or infection the sooner aggressive treatment with antivirals or IVIG can begin.

A year ago I think my head would have spun with the thoughts of intravenous treatments with one of my kids, but now, I have come to expect the unexpected in terms of what all of Cole's doctors might tell me and accept any test or treatment without blinking an eye.  When the girls were his age, I cringed at the idea of their shots, now, I realize shots are a piece of cake!  Honestly, right now I am more concerned with Cole's continued weight loss than anything else.  Losing weight tangible while all the rest is merely a matter of if.  Maybe that's an odd way to look at all this, but we are more or less no longer social exposures are pretty limited and that eases my mind a tad.

After the blood draws, Cole saw his pediatrician for a routine appointment.  Other than the additional weight loss, things looked ok.  At this point, Cole is now down about two pounds in the past month.  At least our doctor reassured us that we were doing all the right things to promote healthy eating, and ultimately, weight gain for Cole.  It would be a matter of whether or not he actually wanted to eat that would determine whether he would gain soon.  Since everything looks good right now, we just need clearance from g.i. and we will be able to move forward with a minor surgery we have had to put off for Cole.  Hopefully we can schedule soon so he is recovered before summer.

Once we were done with the back to back appointments, I wanted to enjoy the day with my two littles.  While we have to avoid crowds, as well as enclosed spaces, Cole's stroller on a quiet trail is just fine.  Since we have not been out as much as we were with the girls, it's funny to see Cole's entire face blaze with amazement as he discovers bits and pieces about his world.  Both Gwyn and Cole were fascinated with a pair of ducks in the park.  Gwyn's quacks and Cole's claps and giggles while the ducks waddled, flapped their wings, then splashed into the pond were absolutely priceless!  Just like the sounds of laughter floating through the neighborhood while the kids rode their bikes and ran through their artificial rain, these tiny moments have etched themselves alongside my other favorite memories from my time as mom, creating pictures of how I always imagined life with kids would be.  This is how I will choose to think of these days, even though indelible images of antiseptic waiting rooms and offices often monopolize my mind.

But

Never has there been a contradictory word that drives me crazy like the word 'but'.  It's a nails on the chalkboard kind of crazy or like my apostrophes gone wild pet peeve with my middle school students who sprinkle their writing with them as if they are topping an ice cream sundae.

So when our immunologist started off with a positive, I waited for the other shoe to drop after she uttered the word 'but'.

To begin, we were told the good things Cole has going for him, that most of his immune system was wonderful, but there was a key part of it that does not function.  This means that there are a particular class of viruses that could be life-threatening to him if he were to have exposure to them either directly or by the rest of the family having contact with them and bringing the shedded germs home.

However, due to the rarity of this nk cell dysfunction, the relative new nature of studying this disorder, as well as the limited amount of research in kids Cole's age, the actual diagnosis may not be solidified for another year. Before they will confirm this disorder with any kids, they usually have a least a year of poor nk cell tests, or at least six tests.  At this point, Cole has only had two.  Doctors also want to rule out the possibility that these results could stem from his g.i. disorder or class of drugs they are treating him with since there is a study that links the two with decreased nk cell function.  Once again, our physician is unclear since there is only an old study dealing with adults and the information regarding kids like Cole and their nk cell studies just are not available so it is tough to truly tell us if their is a link or if he can just be diagnosed.  For now, they are just classifying Cole as having an immunologic disorder. 

With the information we have, we also need to make some decisions about the level of risk we are willing to take with Cole's immunizations.  The majority of them are will be safe for him as they are killed vaccines, but any live vaccines can have life threatening complications for our little guy.  For example, if we do go ahead with the chicken pox vaccine and see one little dot, we need to take action immediately without waiting to see what happens because things could go downhill quickly.  At the same time, the benefit of the shot could outweigh the risk. Ultimately, we are gambling whether we get the shot or not.

Yet again, our immunologist has consulted another researcher.  This doctor is in the process of leaving the east coast for another position in the southwest.  If Cole's blood work next week shows he has not started to form and antibodies against the herpes class of viruses like chicken pox, Epstein Barr, etcetera we may need to meet with this doctor as we move forward.

In the meantime we are to do what we've been doing, keep up the limited exposure to everything, monitor what our older kids are exposed to, and wait.  At least the weather is incredible so we pace a different perimeter.

While we continue in the holding pattern, we are desperately trying anything to bulk up this boy.  In the past week he has continued to lose weight.  Not much, but it is still a loss despite the various high calorie/ high fat foods we have been offering him.  There's about a week and a half until his next weigh in at g.i.  At that point, without a significant gain we may be discussing other measures to get him moving in the right direction.

Overall, despite the long appointment and time our doctor spent with us, the news was about what she had already told us.  On the flip side, there wasn't anything new or worse, so we are pretty thankful today.

Once again, I cannot explain the gratitude I have for family and friends who are there when we need you yet also understand when we have just needed breathing room.  Your messages and phone calls have often come at times when I've doubted my strength or patience in all this waiting and while I know all our changes and sacrifices are for the right reasons, when I'm frustrated at them you've reminded me this is where I need to be now.  Please know, in my heart I know this and I am absolutely sure we are doing the best we can for Cole, and if faced with these choices again, I would make them all.  Everything happens for a reason, and your love, kindness, and prayers are appreciated so much more than I can say.

Love to all.

Ides of March

For the last two weeks the line "beware the ides of March" from Julius Caesar has been bouncing around in my head, both when I am awake and when I am sleeping.

Well, today's the day.  Is it the parent conference for Gwyn I should be wary of or the already ensuing battle of food with Cole?  Since I've already been coated with cereal and bashed by a flying banana I am going to go with the second.

This afternoon we finally meet with Cole's immunologist to go over all of the findings in greater detail as well as learn what the course is from here.  All we really know right now is that she has quite a bit to share with us.

The good news about today is that it sounds like they have more of a plan for us now.  No matter what it is, we're ready to do anything and everything for him.

Never thought when we had Cole our lives would change so much, then again, you never think that your new baby will be sick.  Why not our family?  Things like this can happen to anyone.

All I know is like the girls, our little man certainly is something special, here for a reason.  I know I have certainly learned quite a lesson in humility.

Basics

When you are given a tremendous amount of information you often just have to let it sink in.

When you are given this information as the basic pieces you need to know now, then told you need to come in for a sit down discussion, the saturation of information is just different.

I can't say it is really good news, or that it is bad news, or that the news gives us more knowledge than we had before.  However, Cole was given a probable diagnosis, not just a "well it could be this", an actual disorder they are going to treat him for.  Like his g.i. issues, the overall diagnosis cannot come until a particular progression or pattern is noted throughout tests over a length of time, which, we just have not reached at this point.

Between our immunologist here and the expert in Cincinnati, the belief is that Cole just has nk cell dysfunction, which can be an actual diagnosis when no other underlying cause can be found.  Since g.i. also believes he may have Crohn's Disease, they have been examining links between the two.  While there are not many direct correlations, there are links with nk cell function and autoimmune disorders, so at this point, when looking at the whole picture and other levels of function within his blood, this is their thought at this time.  They will continue to run routine blood tests to monitor various functions over time paying close attention to any changes.  In addition, when Cole weans they will be watching what happens very closely.  Because Cole is still nursing, he may have a boost in his immunity at this point, which may partially attribute to the lack of serious infections to this point.

Initially I was thrilled, but this still comes with quite a bit to take in.  

Basically, the way I understand it, nk cells are a first line of our immune system's defense against different organisms.  Cole's just do not fight these invaders.  Viruses are the worst organisms Cole could encounter and could be devastating.  Even viruses within vaccinations are dangerous, which leads to a catch-22 because kids like Cole desperately need to be vaccinated, but any live vaccination poses risks beyond what healthy kids face.  Before any future healthy kids visits or any vaccines, we will be presented with risk versus benefit ratios in order to make informed choices for Cole's choices.    

In the meantime, until we are given the course of treatment and other options for Cole at this upcoming appointment, we were given a set of warnings and precautions, not all that different from what we had before, but with tremendous seriousness and urgency in how to proceed.  Basically any cough, rash, vomiting or even second hand chicken pox exposure could create a downward spiral for Cole.  We are to continue our minimal exposure to large groups for now until our appointment where once again our physician says she will address how we progress from here, treatment, and contacts, especially with other kids.  I am rather curious what she is going to say at this point.  

Our next few weeks are the information rich parts of our road, we have many appointments with specialists to follow up on recent tests and procedures.  Even though we now seem to get multiple phone calls during the week from these doctors to check on Cole, I really like the face to face conversations.  I've learned just as much from their explanations and answers to our questions as I have from their body language, and I'm a bit anxious to see and hear what they will share.

Deep Breathing

Experts say that deep breathing is one of the best exercises for staying calm and relieving stress.  Sure, it works, but so does driving down the Thruway with the radio blaring. Which happened to be the best medicine for me Wednesday morning.

It had been a long night with Paige, her fever had continued to spike over 104 even with medicine.  Initially when I called the doctor we were told to go to Children's, but she would have to contact them first to let them know we were on our way.  Before we could get out the door, the nurse called us back, telling us Children's did not want her there spreading whatever infection she had and that we needed to give the antibiotic time to work.  Even though we were not going, we needed to watch her closely, so I settled in the recliner with my book ready for the night shift.

High temperatures are frightening.  Even after popping her in tub, her temperature only fell a few tenths of degrees.  In between each bout of sweats as the fever broke and before its inevitable rise she would talk in her sleep. This would have been much funnier had I not been so worried about her.  The last time it happened, she sat straight up, looked at me and told me she "couldn't write anymore, there was something on her eraser!"  Then she proceeded to lay right back down, snuggling Pooh Bear as tight as could be.  Not long after, the chills set in, and after the last fresh tub, set of jammies, and bedding for the night at about 4, it seemed she was finally on the mend.  Once I knew she was ok, I allowed myself to shut my eyes, hoping for a few hours before the little man called for me.

To say I was looking forward to a nap not long after I awoke the next morning was an understatement!  Still, I was pretty happy that after three days she was actually asking to eat.  I didn't care what she wanted, I would make anything.  After polishing off two plain pink pancakes she scurried off to play with her sister.

Balance was returning to our house when the phone rang.  It was our immunologist.  I was caught off guard.  Shouldn't examining the specimen and running tests take longer?  I knew she would be calling, but in my mind I was prepared for a call in the afternoon.  Without hesitation, I was informed that due to the biopsy findings the game had changed.  The presence of a granuloma in addition to his other labs meant that Cole matched criteria for a disease they were not looking at before.

CGD, or Chronic Granulomatous Disease is now the illness they are considering.  Our physician explained that CGD is another rare primary immunodeficiency disease that would require a lifetime of medication and limits to activities as well as a possible bone marrow transplant.  Luckily, the test for this disease could be done here in Buffalo.  We would need to go to Children's for a test sometime this morning or wait until Monday since the expert would need two consecutive days to work with the live cells.  If we went today, we would know by the end of the week.  Needless to say, running on adrenaline and caffeine I packed up the baby and off we went.

On my way, my head was just spinning with a million what ifs.  The happy chatter from my little man only made my thoughts race faster.  How could any of this be?  Honestly, in this moment I could feel the anger pumping its way through my veins in a way I have never felt in my life.  Maybe it was the lack of sleep over the past week, since it seems I've been able to divert this feeling for some time.  Logically I know, CGD may not be what he has, but I still couldn't stop the feeling of fury as I thought of what his future might be if this test comes back as a positive.

My red passion melted quickly with a good song and the giggling drifting through the car from the back seat. I'm convinced he was laughing at my singing ability or lack thereof by the way.  The more I thought about it, I realized and understood that I was not angry, just absolutely terrified of what may lie ahead.  Not just all the medical stuff, but afraid of the heartbreak that could hit everyone we love. While valid, these are not places I wanted to let my mind to inhabit.

As I arrived at the hospital and held my precious child in my arms I vowed that no matter what I was feeling, each day would be cheerful, not just for Cole, but for the girls and Nick and I as well.  We would be optimistic and trust that all of this is happening for a reason.  I've even gone back to reminding myself daily not to dwell on what I cannot change, to lessen the risk of being consumed by worry so I am not gasping for breath like a fish out of water.  Instead, I will not look too far down the road when I don't have to, just take things one day at a time, one moment at a time, one breath at a time so I can stay in the eye of this storm.

Don't worry, as we wait, I am practicing my deep breathing in between belting out some silly songs as all the kids giggle.

Tidbits

Yes, I know it is late, or rather early, but as I monitor Paige's fever, I figure it's a good time to share a few tidbits with you.

First, my guest blog about our family traditions on Makingofamom.com should be posted later today.  Please check it out and let me know what you think.  While you are there, take a few minutes to peruse Stefanie's site, I love her growing list of book reviews, crafts, and recipes.  There is something there for all us moms, dads too!

Secondly, we did get a small morsel of news today from Cole's biopsies.  They did find a granuloma, which could indicate a few things.  G.i. shared their thoughts, however was awaiting further testing and feedback from our immunologist.  We were assured that they would be calling sometime Wednesday with more information regarding this finding as well as the results of the Cincinnati blood tests.

I wish I had more to share, but now the tidbits are all I've got.

Still Reflecting

When we left the g.i. office I was at a loss. A baby is not supposed to be sick. Their new life should be full of wonder, discovery, and vigor, not white coats and needles. Not to mention the now shattered faith I had in the doctors to give us answers, not just more questions.

After the appointment, I dropped Nick and Cole at home because I needed to be alone. As I drove to the hospital pharmacy, anger and confusion took turns swelling over me like waves before ultimately receding to sadness for my son. Why did he have to endure all of this? Why couldn't it be me instead?

I picked up his medicine, but didn't start it that evening because he had a fever. I wanted to be sure he was alright before introducing anything else into his little body. The next day the pharmacy called and was relieved to hear we hadn't begun since the dosing on two of the medications was incorrect. Once we had been apologized to profusely and told correct amounts, we called the doctor to double check again. They assured us it was right.

A few days later one of the gastro doctors called us to check on Cole. It was at this point we learned they were consulting with another doctor in Montreal. His advice was to see an immunologist as soon as possible. The g.i. doctor had already made us an appointment for the following week.

Before the physical, the doctor had many questions about Cole's journey. She discussed her observations about Cole based on his previous tests and her exam. After ordering more blood work to check a few things she told us it was nice to meet us, then, wished us luck since she didn't anticipate the need to see us again.

Imagine my surprise when checking in at the hospital for his appointment and finding her waiting for us. A few outstanding blood tests had returned since we had met and she explained the need to have additional screens run on Cole. One of these tests would go to Roswell Park, not because he had cancer, but because of their expertise in what she was looking to have analyzed. Another would have to be drawn the following week and sent to the Cincinnati Children's Hospital to check something called NK cell function.

While the nurses poked around, commenting on the atrocious state of his veins as he wiggled and wailed, I tried without success to calm Cole with his favorite song, Five Little Monkeys.

All of it hit me in that moment, the past week of expedited appointments and tests, the idea of sending specimens to Roswell and Cincinnati, the g.i. doctor's echo that they had never seen anything quite like this and yet another blood battle, it was like being hurled into a brick wall. Here I began the day thinking we were just having precautionary tests. Within minutes the new detour had thrown me for a loop, leaving me grasping to understand the bits of new information about what NK cells were and what they were hoping to find in these tests, which now felt anything but routine.

Once again, we waited.

The phone call came a few weeks later. Overall, most of the tests were in the normal range, which was a good thing, but the test from Cincinnati was alarming. Cole's NK cells were severely dysfunctional. In other words, his immune system was not working the way it should be. The good news was that he had some function, which was better than the zero that some kids have.

With such low function, as well as Cole's other symptoms, immunology suspected Cole might have a primary immunodeficiency. They referred us to genetics in order to have a test for a rare genetic disorder called NEMOS.

Days dragged as we waited for our appointment, little did we know what kind of wait we were in for.

This appointment was unlike the others. Most of the time we met with a genetic counselor. First, she built an extensive family tree, outlining all medical conditions we were aware of in a few generations of our extended families. Then she explained exactly why Cole was having the test and how results were formulated. Results would take between 4- 6 weeks, maybe longer, since there were more than 20,000 pairs of chromosomal code to be analyzed. Even after the test was complete, results could need further interpretation by comparing them to the genetic codes of my siblings and me.

Once we were clear on what exactly NEMOS was, why the disorder was suspected, and what the testing entailed, we met the doctor. She was compassionate, swiftly completing her assessment while warmly addressing our concerns and giving us advice. After she finished, we signed consent forms for the test and were moved to another waiting room before the blood draw.

This time I let Daddy do the honors as I snuck over to the hospital pharmacy to pick up refills. When the draw was done, we left, emotionally exhausted from the day, with answers seemingly ages away.

Which brings us to today. We are still waiting. Each time the phone rings and I see a doctor's number on the caller id my heart skips a beat.

Throughout all of this, we've faced other challenges. We've continued the food fight, but learned Cole loves bananas and venison, luckily, not together. We've struggled with developmental delays, however he makes a little progress every day and is catching up. We've even come up with a few tricks to get Cole to take his medicines so I am no longer wearing them as my latest accessory.

In the meantime, like other parents, we've been celebrating milestones. Cole's first birthday and first steps, weight gain after a month of weight loss, his literal burst of mobility after the magic course of steroids, and the first full night of sleep.

Every day is different, some much better than others. Yet each day brings out more of his emerging personality, one filled with antics, and let me tell you, with Cole and his sisters, we will never lack for laughter, even in these uncertain times.