Monday, September 9, 2013

We're having a party

I hope that my last post wasn't perceived as a complaint. While there may have been the undertone of "get me out of this hell", I do love this crazy life. I could do without the CF and all of the whining and fighting, but I bet that one day, sooner than I'd like, the neediness will be gone and I will long for it. And not all days are like the day I described. We are busy, no doubt, but I do find time to do some things that I really enjoy. I've been taking a lot of pictures again lately and that makes me happy. I've also had the opportunity to set aside some time to do more work with Cincinnati Children's Hospital on the C3N Project that we're creating for Cystic Fibrosis. We have a webinar on Wednesday to introduce it to some influential members of the CF community and I'm both anxious and excited.

It's an amazing thing that we're working on, but it's a hard concept to wrap your head around. We've sought out people who are already very engaged in their health and care at a number of different levels, people who would naturally fit into this new model of health management. I just hope we don't overwhelm or scare people away by the novelty of the idea. It's understandable though, when we say we're going to change the way people manage health and care and are shifting the culture to be one of active participation by all parties - doctors, patients, researchers - for people to think to themselves that it's a cool idea but we haven't a chance of actually doing it. But we do my friends. I do believe that we can, and the CFF believes that we can, and it's happening, starting on Wednesday!

I had a really great call this weekend with the other e-patients that I'll be sharing the stage with at Stanford MedX in two weeks. We had the chance to get to know each other a little bit and talked a little about what being a "patient" in 2013 means, how does the role of social media affect that, how did we become empowered and how do we empower others. I've gotta say that i'm most excited about the questions from the audience and from Twitter. I've never been on stage in front of a lot of people, and I'm a little nervous that I don't actually know anyone else that will be there, except virtually through Twitter, but I'm comfortable with what I know and what I do and I'm confident in my thoughts and beliefs about health and care. I think this conference is going to be amazing and I'm very much looking forward to it. I'll be tweeting at the conference (I'm @ekeeleymoore) or if you just wanted to hear all of the amazing people tweeting about the conference, you can follow hashtag #medX. The other folks I'll be talking with are Chris Snyder @iam_spartacus,  Emily Bradley @chroniccurve ,  Jody Schoger @jodyms  and Joe Riffe @dirtemedic. These are empowered patients with valuable perspective to provide, you should check them out!

Schools gotten off to a pretty good start for Drew. I've been overly impressed with the engagement of the school - calling me at snack time to find out how many enzymes he should have for a given snack, wanting to know if he can have different things to drink when I don't pack him a drink, and even a call from the teacher to tell me she has a bit of a cold and asking me how we should handle it. When I asked if she could just be diligent about keeping his hands clean and as much as possibly keeping a little physical distance until she was better, and that we would hope for the best, she responded with "Whatever it takes, we are in this together.' I almost cried. It's so comforting to know that we made the right choice. 

Despite his colonization with achromobacter, he's really been doing well lately (knock on wood). We were able to get his weight up and he's now in the 71st percentile for BMI (the goal in CF is usually to be above 50th). He's not a great eater but he will drink PediSure  morning, noon and night, and that in combination with the little that he does eat has him doing alright. He's wise beyond his years, and a little gentleman already, holding doors and always saying please and thank you. I hate that he has to have CF, but he's doing alright.

If you live under a rock and haven't heard about our Oktoberfest: Drinking for Drew fundraiser coming up on Sept. 21, you're invited. Everyone is invited. We have live music, tons of food, delicious beers, kids activities, vendors and a silent auction. You should come, and bring some friends. It's $40 per family or $25 for an individual. It's gonna be awesome!! (Click here to RSVP)

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