Saturday, March 24, 2012


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.


  1. Hey Liz,
    Sounds like you really enjoy being a mom! It's been beautiful here this week too. Temps in the high 80's! Breaking records. Today as i was reading your blog, three thoughts/questions popped into my head and I wanted to share them.
    1) When I was very young, I had a number of health problems and had lack of speech. One thing that I recall about my mom, was that she always was there for me...took me to all my appointments, went to countless parent teacher meetings to make sure my needs were met in school. I'm sure as Cole gets older, he will recognize and deeply appreciate your commitment to his health and well-being.
    2) I wonder about how Paige and Gwyn react to Cole's condition and treatments. Are they supportive and understanding, or do they feel upset or jealous sometimes about the amount of time spent with Cole. I'm by no means was just a thought/curiosity. I know sometimes when families go through various trials, they essentially draw closer together and sometimes the opposite effect happens. Do you home school with the kids?
    3)I read an interesting article on Yahoo this week about a 9yr old boy who is literally allergic to every food...can not eat or even smell food. Now that's just terrible and soooooo sad.
    I'm praying for you and Nick, Cole and the girls. Stay encouraged!

    1. Hi, Sally.

      Yes, I LOVE being a mom. I always knew I wanted to be a mom, but I also wanted a successful career. After the girls I was only home a few months, but this time I have been home much longer. I give all stay at home moms alot of credit, while working and trying to be the mom I want be was tough, being with other adults was a vacation at times. Now I often find myself having full conversations with our dog when the kids are napping. I do know other SAHMs, however due to Cole's immunological issues meeting up and letting the kids play is not really an option.
      First, I want to thank you for thinking about our family and taking the time to write. It is responses like yours that I go back to when I'm feeling hopeless or alone to be reminded that there are people that we know and even people we have never met who care enough to pray for our family. This means more to me than I can articulate.
      Even in Cole's little face, I know he is happy to have me with him through all of this. When his eyes are filled with terror, I give him my ponytail and sing or recite on of his favorite book to him, then actually feel his body relax I know I am doing the best I can.
      As far as the girls, they have days when they are helpful and days where they are certainly jealous. Gwyn is certainly more prone to being jealous than Paige. Paige is my worrier, so I have to reassure her Cole is doing alright. She also remembers a time when we went out and did more as a family, so the whole transition to adding the baby went from we will have one more person to share our adventures with to the one who keeps us home more in her eyes. While she is very understanding she certainly has her moments where she is upset. I would say this whole experience has brought us closer and set examples for the girls about unconditional love, family values, and sacrifice. As a mom, I am incredibly proud of how they embrace their brother and show their love for him. They are incredible big sisters and very sweet and silly girls. My hope is that through this their happiness is not merely a mask, but genuine. I do not homeschool at this point, however if I ever needed to for health reasons I would be open to the idea.
      I read the same Yahoo article this past week. Like I've said before, things can always be worse. I have a friend who has just learned her child has cancer. I know my blog is mostly about Cole's medical journey at this point, but I try not to spend my days dwelling on the negative, but to focus on the positive in each moment, even it is only one breath at a time. My heart breaks for the families I have met who are in much harder situations than we are.
      Thank you once again for your thoughts and prayers. I believe prayer is powerful and is answered in ways we may never expect.