Thursday, December 27, 2012

Paying it Forward-Reflections on the Year

I have to say it was a great year for our family.  We were blessed. We experienced enough joy to outweigh the trials.   And we were able to share our outlook on life, our faith, and how fortunate we are to be able to share our journey with cystic fibrosis to those who are newly diagnosed.

That was 2012.

I am beginning to loose my memory and even worse, have been experiencing dreams that are so "real" that they replace the real facts and details of everyday life.  So I will try my best to highlight all the amazing things God did in our lives this year!

Our year began with a bang, making a trip to Florida thanks to Make-a-Wish of WI.  Cayden's wish came true and was an amazing week for our entire family.

End of January.
Kalydeco.  Need I saw more?  The miracle drug has and is paving the way for bigger and better things in the near future for CF treatment.  I can feel the intensity building and I know a completely different future for CF is on the brink.

Cayden and Trinity both cultured pseudo.  Both were eradicated in a few treatments of TOBI and CIPRO.

Cayden continued onto 3 rounds of TOBI for cough flare-ups.

Our Great Strides walk team came together to raise a total of $28,000 this year!  A new record.  Every dollar raised has been worth it.

Late May.
Cayden has to leave his Zoo field trip for a CF check-up because TOBI has not helped his coughing.  His PFTs are extremely low and he is admitted to the hospital for 17 days.  He doesn't even get to finish the 1st grade since he is still there long after the last day of school.  Our highlight was meeting Coach Mike McCarthy and even making the news!  Cayden was well taken care of by his nurses and of course had a hula-hooping contest with nurse Brian.  His stay ended with a 5 day treatment of prednisone.  Cause of his cough was high levels of pollen and an allergy to mold.  Great news!

Summer months.
We had lots of fun, stayed healthy and enjoyed being outside soaking up the sun!

We were invited to thank our Make-A-Wish sponsors at the Kramer Cheese golf outing for making our trip possible.  It was such a humbling experience...we thought we would be able to keep it together but we nearly got one sentence out of our mouths and we were blubbering with emotion.  How do we say thank you for something so priceless?

5th Annual Kickball tournament was a best to date raising $12,000.  It was an emotional day missing one of our huge sponsor and founder-Randy Schopen who passed away last Dec. from a heart attack.  He was so missed, but of course another door opened and Pam, owner of Tutto Pasta in Madison took on the meal for the event.  We are looking forward to working with her in the future...she loves every opportunity she gets to help with CF as her son also had CF.

Cayden got his Eflow nebulizer.  It has cut down treatment time from 20 minutes for TOBI and Hypertonic saline nearly in half!  He loves it because it is portable and even runs on batteries :)

Probably the highlight of the year for our family was being featured in Madison Magazine's 10 People who benefit from local charities.  I love it not because of the publicity, but really because I love sharing our story.  It's how we "pay it forward" to the people that came into our life when CF was new to us.  As devastating as CF has been to our family, that is not what we want people to see.  We want people to see how much positive it has brought to our lives and to see beyond all that CF does and is.  That you can rise above it.

You can read our family's story here:

The year was also filled with CF education day, meeting new families affected my CF, celebrating the amazing accomplishments of our friends and family, and most importantly the development of researchers.

I feel blessed.

Let's raise a glass to 2012 and here's to 2013 being the best yet in CF research!

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