Sunday, April 29, 2012

Blogger changed. I can't figure out how to make many edits that use to seem so simple. I have a hard time finding a post that I started and saved when I want to come back to it for some edits or completion. I can't figure out how to change links or add things. Its frustrating. 

We had our first Doin' It For Drew walk in Philadelphia last weekend. Seemed to be a huge success! We haven't been able to actually attend a Philly walk yet but hope to next year or sometime in the future. Here's a picture of much of the gang who walked there. The Cincinnati walk is on the 19th of May and I'm hoping for as good a turnout of family and friends to walk with us. It means a lot to us to have our friends walking with us to show their support!

I got a sinus infection this week. I have a bad feeling that means that someone else will be sick within the next few days. While I hate it when any of my kids aren't well, I really hope Drew doesn't catch it. Health here has been so good lately I'm afraid to talk about it. Funny thing about Drew is that whenever the rest of the house gets sick, he seems to be able to ward it off for a few days longer before it affects him as his white blood cells are naturally in overdrive fighting off the bacteria that his body seems to find and cling to. 

I've loosened up quite a bit since he was born. Back in the day (you know, 2 years ago), we didn't take him out in public to much, didn't invite many people over for fear of them bringing in germs and our world being turned upside down by a simple cold. There were things I thought that we'd never be able to do again. I've loosened up. I still clorox wipe tables and high chairs at restaurants when we go out to eat, and we use a lot of hand sanitizer. But generally I now think of them as just good practice. He's allowed to play at the museum or at a restaurant playland, but he gets cleaned off before he does anything else. I'm not terrified of him being out in public. All of our friends know and respect the fact that a simple cold could turn our world upside down and the don't come over to play if they are sick. But they do come over. And they do wash their hands before they start playing. We sanitize all of his breathing equipment before every use. We do hypertonic saline nebs twice a day every day in addition to all of his other medications. All that we seem to be doing seems to be working, at least for now. I know things change, but for now we will stick with what works. Masks at the doctor office and crazy cleaning lady when we go out to eat. All that said, I did relax. 

We are learning to live with this. I'm not terrified of CF like I once was. I don't like that we have it, not one bit. But there is more good than bad for us right now and our life and our family is our focus, not our CF. When I stopped being afraid of everything that could possibly go wrong, I loosened up. I focus on fundraising and on the future. I am not naive to what this disease can do. I'm just confident and determined to do what I can to find that cure. It's coming, I know its coming. 

My dear friends at Nielsen had a bake sale for Drew on Friday and raised $560!!! To date, I've raised $5,367 this year, falling just a little shy of my $7,500 goal. We still have our upcoming yardsale where I hope to raise another $500 or so. Last year I raised almost $12,000 and hope to rev up some of that momentum again next year and make even more than that. Overall, our Doin' It For Drew team nationwide has raised $11,888. My goal was $30,000. I will find new ways to get there, it may just take some time. 

There is a great new website that just went live about a week ago called CFTR2CFTR2 is a website designed to provide information about specific cystic fibrosis (CF) mutations to patients, researchers, and the general public. For each mutation included in the database, the website will provide information about whether a mutation causes cystic fibrosis when combined with another CF-causing mutation, and provide information about the sweat chloride, lung function, pancreatic status, and pseudomonas infection rates in patients in the CFTR2 database with this mutation. Its a pretty cool website, you should check it out if you have CF in your life. If you don't, you will probably find it boring. 

That's all I've got for today! Hope this rainy April brings the promised May flowers!

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