Tuesday, November 13, 2012


This past weekend was full of CF Adventures.  Three events if you must know.

I was inspired.  Uplifted.  And filled with what the future holds.

Clinic appointment for all three kiddos was fabulous.  Cayden is up weight by 5 lbs since just September.  He has now hit the "60 lb club!!!".  Trinity gained 1.5 lbs and for now our plan remains the same to continue her high cal diet with no talk of a g-tube for the time being.  Our dietician suggested restarted the appetite stimulant to boost her system again.  Cooper, well...does what he does best and that is gain weight.  He is nearly off the top of the chart and if he went any higher he would be on the person next in the charting order!

CF Education Day brought so much promise and excitement on the new drug release of Kalydeco and drugs like VX809 in the pipeline.  The data was absolutely amazing with even negative to "questionable" sweat tests of those patients in the clinical study receiving combination Kalydeco and VX809.  Possibly the best part of the day was hearing from a young woman (26 years old) who participated in Kalydeco clinical trials and improved her lung function from 70% to 96% within 2 months.  As a mom I felt so filled with hope hearing how her quality of life has changed.  For the better.  She is healthier now than she was in her teenage and college years.

The parent panel was amazing and inspirational filled as there are so many things as a mom of little ones I have not even begun to think about.  There are so many experiences and "firsts" that await us.  Connecting with other CF moms and dads is always uplifting on so many levels.  This year I was able to meet in person a new CF mama and friend that I admire so much.  Her story is unbelievable as her family is adopting a baby girl with CF.

CF Gala Amazing Race for the Cure raised over $150,000!  Last year's Amazing Race winners Rachel and Dave, Madison natives had met us a few weeks ago for pictures with the kids.

They are such kind and humble souls.  Strangers to CF until now!  I think we all might just be friends after meeting:)  I hope to post the pictures as soon as I get them from the photographer.

Mostly, I know that the future for CF is brighter than ever and those that know what is happening in the CF world are beyond generous.  Every little bit has added up to now.  A cure is nearer than ever.  Kalydeco was a drug being dreamed of by the Vertex Drug researchers for over 15 years.  They have found not to retire until every mutation has it's version of "Kalydeco".

1 comment:

  1. Hi, I've been reading your blog and this post made me so happy! Firstly for your children and how well they are doing, and secondly for the amazing news that the researchers are trying to develop kalydeco for every gene mutation. This is exactly what we've all been hoping for! I really feel like we are right on the cusp of something amazing. You have turned my bad day into a really good one.
    I hope you are well,