Saturday, January 19, 2013

One crazy busy week...but it was a good busy

This has been a busy busy week!  On Monday night, co-founder of Karan Singh called me to talk more about the opportunity for us to work together. I was so thrilled to have the opportunity to talk with him to personally and express my interest in his company and how I think can grow, both within the IBD community as well as in other chronic conditions, specifically Cystic Fibrosis. The conversation went really well (in my humble opinion) and I followed up later in the week with an email including some of my ideas around a strategy for growing the company. Hopefully I will hear from them soon and they will want me to be a part of their team as badly as I want to be.

On Tuesday, I had a meeting at Children's with the team working to bring the C3N to CF. We are in the final weeks of preparing for our visit with the VP of Clinical Affairs from the CF Foundation, Bruce Marshall, and we are ironing out all the kinks and making sure that we have a solid presentation. I'm going to start the meeting (yay!) with a personal story or testament of sorts as to how we, the patient, could benefit from the C3N for CF and how we see it improving both care and outcomes. My talk includes, as I see that as equally beneficial to the CF community, and more and more of the people I meet with are starting to agree with me!

I was invited to speak at a corporate recruitment event that the Cystic Fibrosis Foundation was having on Wednesday over lunch. It went so, so well. I was able to talk with the VP of the Bank of Kentucky and the wife of the new president of NKU and several other folks in positions of power and influence. We had a great conversation and I left with some new connections in the community and some new support for the Foundation.

Thursday didn't go as expected, but it went well anyway. At the event on Tuesday, one of the girls who works at the CF Foundation locally told me that she'd been contacted by the father of a girl with CF who has a connection to Rep. Brad Wenstrup. It wasn't entirely clear who we were meeting with, but I got my advocacy materials together and met for lunch with the CF dad and a colleague of his who has a number of connections politically. He was able to provide quite a few connections for us and some tips on getting into meetings with senators and representatives. It turned out to be a great meeting, even though we had less than 24 hours to plan for it! From there I went back to Children's for a meeting with a team that I'm working with to create a Facebook page for CF at Cincy Children's. We are doing it with the intention of collecting useful and shareable data and using it to enhance other different projects that are going on. We are hoping to get many in our clinic and the adult clinic at UC to join the page and contribute to different discussions that we initiate. It will be open to anyone, so once its up I'll spread the word! I got to spend some time in the NICU Thursday evening, and then attended a Tupperware event. I'm about to start my annual fundraising campaign again and Tupperware will be a part of it (try to contain your excitement).

Friday was our monthly CF Parent Involvement in Quality Improvement meeting at CCHMC. We are still working on getting patients more involved in the pre-visit planning. It's coming along nicely, and I hope that as we get more integrated with the C3N project, we can really benefit from the collaboration of patients and physicians.

One of the highlights of my week now is the twins dance class on Friday evenings. Usually by 5pm Friday I am ready to check out. I was nervous about the time slot, because everyone is cranky then, but to see my babies (and the one other little girl in their class) concentrating and working so hard and at the same time having so much fun, it just warms my heart and makes me smile. It is the perfect way to end my week.

Drew has been coughing a little bit more than normal for about a week now. It's not enough to be terribly concerning, but on Friday I finally mentioned it to his doc and she gave me a throat swab and some orders to take a culture. I asked if I could do it from home because I'm terrified of taking him into the hospital during the germiest season of all time. I did the culture and dropped it off on Friday night so we should know something by the middle of next week. Hopefully its nothing, but if it is, at least we will know and can get him on something. He's really been pretty healthy (knock on wood) the past couple of months. I hope that it continues!!

Next week is a bit slower. We don't have any real plans and I think it will be nice to not have to worry about a schedule, outside of school of course. I'm getting my back fixed on Thursday and that means that after they jam 4 giant needles into my spine, I will get to lay in bed all day. I am looking forward to some pain relief and a day off! I've been doing this for almost 10 years now, just about every 6 months. The injections really do the trick and last a nice long time, and any surgical alternatives are risky and not guaranteed to fix my problem. So the injections and a day of relaxation continue.

February 1st is the big meeting with Bruce Marshall and I'm excited! I'm also psyched for the March on the Hill and the Volunteer Leadership Conference in DC at the beginning of March. There are so many good things happening in CF right now and I'm so happy to be a part of it!

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