Lots has been going on around here lately. In addition to it being a packed summer full of swim lessons and play dates and vacations, the CF Foundation has decided to move forward with a partnership with the C3N project! YEAH! We were able to share with them the value that we see if collecting and sharing new ideas and ways of managing health in CF and how the C3N project is just the place to do that. I've been keeping busy as we start to kick this thing off, creating a brand for it and figuring out a communications plan and implementations strategy. Late this week, I'm having a meeting with some folks from the foundation to share the data I collect on Drew and discuss other things that we could measure and what we could learn from the stuff we are tracking. We are also working with the UC Design School to figure out what this project needs to look and feel like so that it will work for everyone.
Drew is doing well. We had a regular clinic visit about 2 weeks ago right after we returned home from Philadelphia and our little adventure downtown for a night. His weight was down a little, which wasn't surprising given that he doesn't eat anything. We decided to start tracking his calorie intake and charting it in my PersonalExperiments with the rest of the data I collect to see what he is actually getting in and where there's room for improvement. We also started giving him Ensure Plus instead of just Ensure. I've been so focused on fat, so we decided to shift that focus to calories for a while and see what it gets us. After just two weeks of tracking, we are getting in over 2,000 calories most day, and his weight has gone up .2kg each week over the past two weeks! While keeping a food diary certainly takes some time, MyFitnessPal has made it incredibly easy for me to quickly track both what I'm giving him and then by adjusting serving size I can track what he actually takes in. The dietician can log in to see his data and his calorie distribution throughout the day, and offer suggestions based on what he seems to enjoy or what meals he seems to eat the most at. I take the total calories in a day number from MyFitnessPal and put it into the PersonalExperiments and then I can see how his stool output or cough frequency relates, if at all, to his appetite and calorie intake.
The other exciting thing that happened is that we found an electronic stethoscope company who is interested in partnering with the C3N project! They are going to let me test out the tool and we will work together to see how we can quantify breath sounds and record them and append them to the data I already collect to see what value that can bring to care. I don't have it yet but I'll definitely be updating the world once I get it and start using it.
That's all the updates I have for now. Trying to keep cool and busy this summer, and next week we head to Michigan for a little vacation. More updates as they break!
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