Monday, March 25, 2013

Ups & Downs of the past two weeks

It has been a roller coaster of highs and lows over the past two weeks. A few weeks ago, a member of the CF community whose father I work with at Cincinnati Children's received a life-saving double lung transplant after 2 years on the transplant list. She was in respiratory failure and her lungs came just in time. I cried happy tears for her and her family. We receive weekly email updates from her father sharing her progress, and sadly just three weeks after receiving her transplant and just one week shy of her 21st birthday, Alicia Lang passed away. Her body was simply to sick to handle her new lungs. I have heard of many lives lost way to early to CF, but this was the first person that I actually knew. And I didn't really know Alicia. I'd seen her a few times and heard her speak at a CF Education Day and once when she received a Making a Difference Award. But I knew her father and I saw his fight. And at her funeral services he said that this is every CF parent's nightmare, that you never want to think about losing the fight, but you always have that fear in the back of your head. But luckily we were still high on the Volunteer Leadership Conference, and made the decision after we left Alicia's viewing that we were going to do more. And I am on it!
Later that week, I was invited to a kind of cool event. Cincinnati Children's is opening a new outpatient facility and Urgent Care in Green Township, and they found local bloggers who have some sort of connection to Children's and invited them for dinner and drinks and a tour of the new facility. That CCHMC, they're one clever organization. Their clever ways are only one of the reasons that I just love this place. First of all, they saw a need on the west side of Cincinnati and they took their time figuring out the best way to fill it. They worked with their advisory board on details like child-height sinks and amazing artwork and decor to make their patients feel comfortable in what is almost never a comfortable situation. They have some amazing facilities at every location that they have, but at the new Green Township location we are talking state-of-the-art sports therapy facilities and sound proof, gorgeously decorated audiology booths, natural light EVERYWHERE. Heck, they even gave the lab a beautiful view instead of sticking them in a basement. The way that these amazing people work together, with one another, with their patients, with their community, blows my mind. I don't know what its like to be "on the inside", but from the outside, Cincinnati Children's Hospital and all of its facilities are amazing. If the rest of the world ran as seamlessly as Children's does, at least from my perspective, it would be a much better place. The new Green Township location opens at the end of April and they have quite the grand opening scheduled. On April 20 from 11-2, you can (and should) check out this amazing new facility. And no one paid me one penny to say any of this. I do truly love this place.
Speaking of loving this place, I wanted to share this short video about CCHMC and you can see for yourself why they're so amazing.

Healthwise, we're dealing with our first since birth bowel issue. I won't go into the gross specifics, but we're on a Miralax clean out right now after a belly x-ray showed that Drew was backed up. Not nearly anything as serious as his meconium ileus, but just some stuff that needed some help working its way through. A Miralax clean out is gross. We're talking 6+ cups of juice with a capful of Miralax in each. I can't imagine he feels good doing this, but if it will solve our problem then we will deal with it. And frankly, he seems to just be taking it all in stride. I know this will come back to bite me in the ass, but at least he's still in diapers.
I've got another big fundraising post coming up either later this week or early next. Roll your eyes if you will, we need it and I'm gonna raise it. I also have more news about the C3N for CF that I need to write about. We're looking forward to Easter and a few days without an agenda so hopefully I can find a little time to sit down and write. Happy Spring!

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