Wednesday, March 28, 2012


It's official.  Cole was officially diagnosed with Crohn's Disease this morning.

Saturday, March 24, 2012


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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.


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Friday, March 16, 2012


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.

Thursday, March 15, 2012

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.

Tuesday, March 13, 2012


Hi, my name is Liz and I am a dip-aholic.  It has been a little over a month since my last dips.

Until tomorrow.

Tomorrow marks operation dip discovery day one.  Cole will have it all, veggies and dip, fruit and dip, bread and dip, and even pretzels and dip!  According to the nutritionist, the higher the fat content, the better.  I'm primed and ready to offer him as many dips and dippers that it takes to get him interested in dunking and ultimately, eating.

With Cole's consistent weight loss, it is imperative for him to start gaining as quickly as possible.

Unfortunately for me, it means leading by example.  My arms really don't have to be twisted all that far to plunge peppers into cold creamy deliciousness instead of just gnawing on them naked.  Too much of this will only translate into trouble for my trousers!

I need your help.

Please comment below or send me your dip recipes and ideas, because I will need to pull every trick out of my hat to keep this kiddo interested and to him variety really is the spice of life.

And hopefully, as he gains, this weather stays nice so I can just keep myself moving so I do not face the same fate!

Wednesday, March 7, 2012


There's nothing like a taste of spring topped with sunshine to sweeten the start of any day.

Today was Cole's follow up appointment from his last colonoscopy.  Since they had already called us to discuss the discovery of the granuloma we figured this would be a relatively short visit.  At this point I'm come to realize anything less than an hour is just abnormal.  And just as our visits seem to be getting longer, they are also getting closer together.

Now that the biopsy shows a granuloma, the physicians are closer to truly diagnosing Cole with Crohn's Disease.  They are still hesitant because the presentation just is not quite right and they are trying to be entirely sure the nodules and inflammation are not symptoms of something else. There is still the fleeting thought that with Cole's immunological issues the gastro problems could be a side effect of another problem.  So, we continue to wait.  This is the same position we have been in for the past few months, as if our iPod is stuck, repeating the same song over and over.

Even though Cole is flaring right now the doctors are trying to stay away from another course of steroids due to the issues with his immune system.  In addition to suppressing his immune function further, the prednisone could also begin to impact his growth, which at this point is not going in the right direction.  Once again, Cole is losing weight.  This time he is down a little over a pound in the past three weeks.  Unless his symptoms begin to worsen, we are just to continue with our usual medications and work on getting Cole to not only eat, but to put on and maintain his weight.

To help with this task, the g.i. nutritionist will be in touch with us tomorrow to discuss how to bulk up Cole's diet.  One thing I do know, there is no weaning in my near future.  From the last visit I thought I might be able to nurse less, but the doctors have told me I cannot at this point.  I'm ok with this, I just was ready to know there would be no more unexpected bites in my future.

So as we wait to hear what immunology has to share with us next week, we keep working on trying anything and everything we can to get the little man growing.  Here's hoping for big gains in the next few weeks.

Tuesday, March 6, 2012


There are times lately when I really think I've got it all together, then I realize I happened to miss a beat somewhere.

This week is a one appointment week.  It was however supposed to be a three appointment week, yet I wrote the girls' dentist appointments on the wrong date of the calendar.  I honestly have no idea why!  Luckily the dentist knows our situation and just rescheduled us for the cancellation he had next week.

As I painted our hallway yesterday, I was downright proud of myself for having laundry done, dinner cooking, and everything else in order.  Then the office called to see if things were ok here since we don't miss appointments.  Like the office, I guess I should laugh at my mistake - I know I am far from perfect!

Tomorrow we see the g.i. doctors again, not just to follow up, but to discuss in further detail the latest colonoscopy findings.  Since Cole has been flaring for the past few days, this appointment couldn't come fast enough.  We know they are going to outline the path ahead in more detail, even though we have a pretty good grasp on where we are headed.  Keep your fingers crossed we are not in for any more surprises!

In the meantime, we will settle in for one of our many pre-prepped freezer meals I made last week.  One day of prep, lots of meals for when you don't have the time to cook.  It was nice to change beds, play, and get in a workout during Cole's nap instead of prepping dinner.  I'm feeling energized and looking forward to practicing math facts with the girls tonight!

Saturday, March 3, 2012


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.

Friday, March 2, 2012


Funny how you can remember when certain things happen as if they were time stamped in your mind. The last weeks of February bring Valentine's Day and Nick's birthday. Somewhere in between the two is when all of this began with Cole just over a year ago.

It is difficult to believe a year has passed and we are still searching for answers.

On Monday we learned from our immunologist that Cole does not have CGD, however his nk cell function still came back in the low single digits, slightly lower than the test in the fall. From a medical standpoint, she explained the importance in understanding why Cole's nk cells are barely functioning. Once again, our doctor has reached out to a leading expert from Cincinnati Children's Hospital because at this point she has run all the "normal" tests they would in this situation and is not certain how to proceed. Since the physician in Ohio is the nk cell guru, she should be able to give us a further recommendation or know of a research study that is looking at this type of cell dysfunction with his other symptoms. She may be able to validate a connection between the nk cells, granuloma, and Crohn's Disease, which, as progression is documented over the next few months, may finally be officially diagnosed. Right now there is still the question if all the inflammation is Crohn's or a symptom of something else as many of the different primary immunodeficiency diseases wreck havoc on various organ systems, including the digestive system. Funny how at this point in this journey we are praying it is only Crohn's. There are still many obstacles having this so young, but looking at the other possibilities, this is the lesser of all evils. If this is the case, not only will he continue on his course of current antibiotics, but there is a possibility Cole will be placed on prophylactic antiviral medications to help ward off infections before they can start.

The watched pot never boils, the same is true with the phone. It seems when I am given a time to expect a call it never comes, so instead of anxiously sitting by the phone Thursday morning, I stepped out for an hour with some friends for coffee. Of course the call came, however our physician assured us she would call back at 12:30. Around five I gave up on hearing from her for the day.

So, today should be the day for news. I've got my pen and paper ready for notes, my questions prepped, just need my source. After a year, I am not only ready, but almost desperate for definitive answers, even if it means another turn on this path, anything that brings the doctors closer to the information they need to help Cole.

Once again, thank you all for the message and prayers, your support and love help us stay strong. We love you all.