Posts
2014 was definitely a slower blogging year around here but that doesn't mean that we didn't have a lot going on...I'm afraid it was just the opposite!! I apologize for not keeping up on here as much as I need to, but I certainly hope to post more than 123 blogs in 2015 (we posted 356 in 2009!!). Thank you all for your continued support.
Here's the best that I can remember from 2015 with links to many of the highlights...
January- Being hospitalized right up to December 23rd of 2013 combined with the holiday celebrations, I found myself struggling with maintaining consistency with my workouts. Entering the new year, I was focused on getting back into my routine and eager for what 2014 would bring. We were also doing a TON of experimenting with the Vitamix blender we got for Christmas and Mandi was preparing for her first ever full-marathon, which she of course NAILED!!CysticLife: We were awarded a contract by PCORI to establish a patient-centered research community for cystic fibrosis which drove much of what we did in 2014. We also started working with a new development team that allowed us to push forward at a faster pace!
February- I celebrated my 34 birthday in a very quite way as usual (birthdays have never been a big deal to me). Meanwhile, Mandi wrote about what a large impact strangers can have on our lives and the impact we can make for them. We also moved forward with a completed a "kitchen remodel" of sorts after we decided that we needed a new refrigerator. I took a retrospective look on how much time I devote to taking care of cystic fibrosis.
CysticLife: The contract period for PCORI began and we were off to the races! A big part of the job began as we started to move CysticLife.org to a different framework to keep up with the demands of our growing community.
March- Taking full advantage of classes offered at the local community center, we enrolled Mckenna in her first dance class. On a not so bright note, I lost a friend from the CF community who I spent many weeks with in the hospital down in Tucson. And in possibly the strangest story of 2014, I actually managed to get an earwig stuck in my actual ear!
CysticLife: We were knee-deep in getting an advisory board established to help guide us on the PCORI contract.
April- April started off with some disappointment as we learned that the last two embryos we had did not implant after transfer, but we also reflected on the gift we have already been given. I started attending Man Church as my softball games were scheduled during one of my usual bible study times. We also enrolled Mckenna into some ISR safety swimming classes as we are around many pools during the summer.
CysticLife: Due to the overwhelming response by the CL community to serve on the CL research advisory board, we also established a research ambassador program to take advantage of the passion around research in the CF community!
May- I spent half of May in the hospital and a torn pleural adhesion could have been one of the contributing factors. I missed a family vacation as a result, but as I noted, life often comes down to the choices we make. Mandi and I also celebrated our 4th wedding anniversary!
CysticLife: Work continued on the CL site to capture member experiences that could be turned into research. A governance structure was also established to help guide the CL Research Advisory Board.
June- We took our annual family trip to Rocky Point, Mexico and had a blast as usual. I also started a new weight lifting routine. Vertex also revealed the results of its big DDF508 study which resulted in some enlightening conversations as I encouraged the community to "proceed with caution".
CysticLife: A ton of work was being done behind the scenes on CL 2.0 which will update the look and features of the CysticLife site. It's a big job!
July- We spent the July 4th weekend camping, so I had to figure out a way to get my treatments done without electricity - enter the power inverter! Mckenna took a big step in her life as we converted her crib to a big girl bed! Mandi reflected on a sermon that really resonated with her and decided I was not defective ;)
CysticLife: We launched Snap Polls on CysticLife.org as a better way to provide feedback more quickly.
August- In what may have been the most widely read and shared post of 2014, I pleaded with Vertex to provide Kalydeco to a couple of girls in Arkansas who were in desperate need of it. I also shared that my lungs aren't big fans of strong scents, an thought shared by many. We also had a family trip to Hawaii!
CysticLife: August was full of tightening up loose ends on various small projects that we had been working on.
September- We decided to pursue another IVF cycle after another failed attempt with donated embryos that were gifted to us and asked for prayers from the community. There were many posts during this time updating all of you on the progress of the cycle as well as specific prayer requests. One Republic featured a CF patient in a music video that reminded me of who was really responsible for me being the man I am today.
CysticLife: A lot of talk around Patient Powered Registries and how CL could support one on the site for the benefit of each individual member and the research community at large.
October- We found out that we were pregnant a week into October, but very soon after had an unfortunate turn of events when we lost that pregnancy. That experience only strengthened our desire to become foster parents and we were thrilled to be able to complete the classes necessary in the third week of October. We also had a great Halloween!
CysticLife: The CysticLife Research Advisory Board was busy examining the over 40 research questions submitted by the CL community and choosing the top 5 that could be turned into exciting research.
November- I went into the Hole and Mandi and Mckenna took off for Florida to hang out with Grammy! Mandi was "single-mommying" it for much of the month. We continued to take the necessary steps to become licensed foster parents and little did we know that our very first placement would be born this month.
CysticLife: We opened up research question scoring on CysticLife and the response was fantastic. The CL community really got behind a couple of key questions!
December- We got our foster care license and felt like we were at the top of a roller coaster about to take the plunge. Within 48 hours we had our first placement, Baby N, and she has been such a blessing to have around. The biggest blessing of all however has been witnessing Mckenna's heart throughout this process.
CysticLife: After the CL community scored an exercise vs. traditional airway clearance technique the highest, we immediately put together an Exercise Research Committee to help guide us as we move forward with the research.
Most viewed blogs this year:
I want to take this time to thank all of you for taking time out of your busy schedules and checking in on us from time to time. This year, we saw RSBR reach almost 1.5 million views. It's still mind blowing to me that we have even had 1! I'm so humbled by how many of you continually leave comments of encouragement and support. You've seen our family change in big ways and are always there to lend a few tips and tricks when we need them.
Again, thank you, thank you thank you from the bottom of my heart. Have a safe and happy New Year and I'll see you guys in 2014.
Love from my family to yours,
Ronnie
