Tuesday, October 12, 2010

1 Down, 2 to GO!!!!

Yippy!!! It's official, Rylan's 1st culture from this last bout with pseudomonas came back NEGATIVE!!!! WOO HOO!!! So, now we will start the 28 days on, 28 days off of TOBI (inhaled antibiotic) on the 26th of this month. We will take additional cultures on the off months until we can get 3 negative cultures in a row. Your prayers would be greatly appreciated that we kick this bug in the butt SOON!! FOR GOOD!! Her labs came back normal as well. Her lung x-rays showed some 'streakiness' (mucus build-up), but there was no significant increase from this past January. So, for now we continue doing what we are doing...working hard to keep her lungs healthy and strong.

One question I get asked a lot is, will Rylan ever NOT have to do her vest or take medications...in other words, will she ever get 'better'. There are so many ways to answer that question. For me, many times it leaves me dumbfounded. Because many times it comes from people that I think should know the answer...I guess in a 'perfect world' everyone would know as much as I do about CF. Everyone would take time to read at least a LITTLE bit about it, seeing as though someone I love so deeply has to battle it EVERY day. But I also realize that until someone is personally affected by something, more often times than not, they don't. It's not that they don't care or purposely say or do things to hurt our feelings, but everyone has their own battles and things that are of importance to them. And I definitely DON'T want people to NOT ask questions. I WANT to educate, I WANT to make people understand. I WANT people to know Rylan, and by saying that, I mean to REALLY know her. So, to answer that question in textbook terms...no. Rylan is not going to 'get better'. Cystic Fibrosis is a progressive disease. All of the time/treatments/medications we do is to delay its ugly progression. But to answer that question from a mother's perspective, from MY perspective, HELL YES. With the science and technology that is available today, of course we will find the 'magic pill'. I just need to make sure it's within Rylan's lifetime. So if you HAVE questions about CF, ask me. By becoming educated, you become an advocate. And by becoming an advocate, you help her and the other 29,999 people in the US battling this disease. So, please know your comments and questions are welcome and are actually greatly appreciated!! xoxo

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