Monday, July 15, 2013


So those of you who know me well, or follow Catching My Breath on Facebook know about my latest endeavor.  I needed to leave my teaching job in order to take care of Cole and ultimately avoid possible exposures to the very pathogens his little body cannot combat.  While I have been writing, mostly for myself, and even looking for reputable online work, I have decided to pursue another path while my hands are tied.

I have become an independent Tastefully Simple consultant.  Overall, I hope to be able to have a little bit of a Christmas fund after paying off some other bills.  This was really kind of a spur of the moment decision, and after some thought, it made sense to try rather than question what if this or that.  Truly, I needed to try.  And for me, to have an outside goal, is a good thing.  So for those of you who love Tastefully Simple, I'd love to help you with your orders and even help you host a party if you'd like.  /Please email me at if you'd like to be placed on my mailing list, or just want more information.  In addition, you can follow me on Facebook at

As always, I deeply appreciate the support so many of you have given us each time our path winds a new direction.  Just trying to keep steering this vessel so we continue moving forward.


So while we were going to wait to do the tonsillectomy until school started, the multiple choking issues each day is leading us to want to move a bit faster.  This is the season we can do a little more, and honestly, we just want to savor it for a little longer before the great hibernation begins again.

On the bright side, Cole will be participating in a basic research study looking at the long term effects of young patients on Remicade.  In the end, the researchers will follow him for 20 years!  I always wondered where they found people for such long term studies.  Guess when you meet the criteria and are right there, it makes sense.  In my opinion, anything we can be a part of to provide more information for someone else to help them make an informed choice is certainly easy to say yes to.

Thursday, July 11, 2013

The Plus Side

Great GI appointment. A small amount of weight gained, great labs minus one hiccup, and sustained remission.

Really thrilled with positive news!  Waiting so long for other news starts to eat away at me, so having some good news high to ride for a bit makes me feel great!

Next appointment we will schedule his next scope.  This way he is good and healed from his tonsillectomy.

Off for a walk to watch all the construction trucks building....a great reward for our little man after so many appointments this week!  Hope you all enjoy this beautiful day as much as we are!

Tuesday, July 9, 2013

Another Procedure

So I pretty much expected today's news.  Cole's tonsils are at a plus 4, so large in his little mouth that they really are the prime suspect for all of his gagging, snoring, and night disturbances.  After discussing with his other specialists, we will be taking the first available date for the procedure after yet another frightening gagging incident at dinner tonight.  As much as I'd like to wait until school starts so it is a little quieter at home, I think his ENT is right, the sooner the better.

I think this little boy wants to get his surgeries in before he will ever remember them.  He's sure good at keeping me one busy mama!

GI appointment first thing in the morning.  Looking forward to what they have to share with us.


When I think of our journey with Cole, I know it has changed me, maybe even made me braver than I thought I could be.  I am not the same person after starting on this path, and I didn't realize how different I was in some ways until an old friend I hadn't seen in a while pointed a few things out.

Still, when I think about Cole's battle, I fully understand there is only a certain level of bravery a mom can have, that it is my little man who truly is the one who must be stronger and braver than I.

This being said, I know another young lady, filled with strength and drive, who I admire deeply for her ability to face her cancer battle with dignity.  Her name is Katie, she is my niece.  I just wanted to share her story with you, since it is inspiring and heart-warming.

Please take a few minutes to watch Katie's story, maybe even check out, the organization she has been working with that has helped connect her with other cancer patients.

If she can make it through this, she can make it though anything.  Such a great mantra!

Friday, July 5, 2013


As far as Cole's primary immunodeficiency is concerned, we are still waiting for news from Houston.  While the the initial study is looking for the root cause of the nk cell dysfunction, another is mapping all of our genomes.  From what we've been told, this can take a bit of time.  

For now, we are enjoying our freedom to be outside, to go for long walks, hikes, and  even do a little fishing. It is nice to enjoy nature, the enveloping warmth of the sun, the crisp crashes awakening the sleepy pool waters, moments to savor, to temporarily pause our worry.   And it is in these moments, we are all learning lessons in living, to enjoy today, for tomorrow is filled with the unknown.  


For the followers of Cole's Facebook page, some of this will be old news, yet I've not shared everything here, so I'd like get the blog back up to date.

After Cole's hospitalization this February, we were given two options : remicade or surgery. Neither were our idea of what we wanted for Cole, nor a choice we expected at this point in time.  In the end, we chose to try the remicade infusions.  I have to say, I was so worried initially, yet the drug itself has turned Cole into a different kid.  He has been gaining and maintaining weight unlike in the past.  He has finally hit 28 pounds, which puts him on the growth chart!   In addition, his energy level is through the roof!  Nick and I are just thrilled with how this med is working, honestly, it's almost like watching your baby take their first steps kind of giddy.

Cole did well during the induction phase of his infusions, yet the last two have not been picture perfect.  During both, Cole experienced a reaction, which can be common with remicade, like chemo, the more that builds in your system, the more probability there is for a reaction.  While both incidents were frightening to watch as a parent, the immediate action and supervision of his nurses and doctors calmed my nerves.  I truly can't say enough about these professionals and and the level of care they have given our son, not to mention the the extension of their warmth to me when I am with Cole.

I can't say I'm looking forward to his next treatment in August, when I am there, I'm a ball of nerves.  Yet, I am looking forward to my little bean reaping the benefits of a few hours of discomfort.

Tuesday, July 2, 2013

Beyond Before

before you judge
take a look,
wear my shoes


if forced                                             

life known
grim reality

The Bubble                                        

accept the cocoon?
flip switches of
identity, security                               

epic metamorphosis
unknown tomorrows

for a boy?

                                                            or Not?