Friday was the culmination of many months of work to present the C3N to the Cystic Fibrosis Foundation...and they loved it! The meetings went even better than expected and we're going to work on getting a pilot set up to begin implementing this learning health system into the Cystic Fibrosis community. It's really amazing and I can't wait to share more about it.
Things have been going pretty well here. Drew has had a cough for about a month now, but the first culture we did two weeks ago came back negative so we had just planned to take a closer look at it during his anniversary visit coming up next week. There are some asthma markers that the docs can look for in his labs, and we thought maybe he has some component of asthma or perhaps its just this dry weather giving him this nagging cough. Well the cough kind of picked up a little bit last week, and after a few days of extra treatments and frankly just trying to wait it out, I wanted someone to see him. We took him in on Thursday and his sats were fine and his lungs sounded clear, but the doc agreed that the cough had just been going on for a little to long. We decided to put him on an antibiotic and do another culture. We started the antibiotic on Friday and by Saturday the cough was all but gone. The culture results came back this morning and he has a little staph but nothing terribly concerning, and nothing that the antibiotic won't take care of. So that's good news! Also good news is that the pseudomonas that he grew this summer has yet to resurface, meaning that we get the stamp of "eradicated" since its been 6 months. Hopefully its gone forever. If not, at least its gone for now :)
I'm in the process of signing the kids up for school for next year. I really can't believe that I'm going to have only 1 baby at home 3 days a week next year. Ella will be in full day kindergarten and the twins are going 3 afternoons a week. The anxiety that I'm already experiencing about sending Drew to preschool and relinquishing control is intense, and school doesn't even start until the week after LABOR DAY!! That's 7 months from now. I don't know how much info I should put on the sheet where they allow you to list everything from medical conditions to social concerns. I feel like I should be keeping it brief and then speaking directly to his teachers and other team members at the school to get ready for his arrival. I did have the opportunity to meet the 3yr old preschool teacher at an Open House and I fell in love. Just a genuine and sweet woman and I think that she will do her best to keep Drew safe in her class. If this is how I feel now, I don't want to imagine how I will feel come September.
We're heading back to PA in a couple of weeks before we go to the March on the Hill and the Volunteer Leadership Conference. I do love getting out of town every once in a while, and I'm definitely looking forward to both the Advocacy piece as well as the conference. There are so many amazing CF volunteers, truly the heart of the organization, and I'm anxious to meet with some of them to learn more about how they do all that they do and how I can get more involved. I am not looking forward to as many hours in the car as we will spend over the course of a week. Hopefully it will be worth it :)
Over the next couple of days I'm going to work on getting some of our fundraising information together. We currently have a book fundraiser underway Usborn Books (amazing book company) and I will be able to share a link where 25% of your purchase will go to our Great Strides team. I am hoping to have a Tupperware one organized again soon as well. If anyone out there in cyberspace reading this has and great ideas for fundraisers or is able to help in some capacity, I'm definitely interested in talking to you!
That's all I've got for this very cold Feb. afternoon. More to come as it breaks!
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