Monday, July 6, 2015

Week 98: Americana

This weekend, we attended our neighborhood's 4th of July parade.  It doesn't get much more "America" than this.
The parade was led by a fire truck--our local Engine 9 that Lemon and I have seen many (many) times, followed by a band comprised of anyone in our neighborhood with an instrument and the desire to participate.
 Tell me this baton-twirling lady isn't your hero!
 Most of the people in the parade were kids of various ages on their bikes, which they'd decorated with red, white, and blue streamers.
 The parade traveled a couple of blocks to our local park, where we got to take a look at the fire engine up close.
 The culmination of the festivities was a picnic and party, but by the time that all got started Lemon was so exhausted from the excitement that we had to go home for a 4 hour nap.
On Sunday night, Papa Bear and I completed our American experience (and also our annual soccer viewing requirements) by watching the World Cup final.  So, a very good weekend all around. 

This was also an amazing week for the CF community.  First and foremost, the FDA approved Orkambi, a two-drug combination that treats the root cause of CF in about 50% of patients.  We aren't in that 50%, but we are confident that our drugs are coming soon.  Our sincerest thanks as always to everyone who has donated to the CF Foundation on our behalf--your dollars make these breakthroughs possible!  Second, the results of the first gene therapy trial for CF were announced.  Basically the study found that delivering a normal copy of the gene that is mutated in CF patients directly to the lungs once a month for a year was able to slow the rate of decline in lung function in the treated patients as compared to the placebo-treated controls.  The results are certainly very encouraging, and hopefully will be even more dramatic once more efficient gene delivery technologies are used.  Yet another reason for us to end this week in a very hopeful mood!

Lime is continuing to tick along.  I'm heading towards 38 weeks pregnant at this point.  Lime has continued to pass all of his tests with flying colors, and we're starting to get a little bit serious about the logistics of his birth.  For instance, I have sitting next to me right now an empty tote bag that I fully intend to pack with things to take to the hospital...  

1 comment:

  1. Empty Tote bag isn't for bringing Lime home in?