Dips

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!

Gains

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.

One

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!

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.

Anniversary

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.