Tuesday, February 22, 2011

Oh February, I loathe you

We had a week of absolutely fantastic weather here in Cincinnati last week. We went to the zoo. We played outside for hours (yes, hours!) more than 1 day last week. Ella's class spent the entire morning outside at preschool. And today its raining a freezing rain. Seriously, WTF!

The spring-like weather was invigorating. I had windows open in an effort to get all of the germs out of our house. Everyone is health-ish. Lily just wrapped up antibiotics for an ear infection. Drew finished up the Cipro (the oral antibiotic component in the fight against pseudomonas) and has 9 days left on the Tobi (the inhaled antibiotic component in the fight against pseudomonas). God-willing, we will be able to get rid of the pseudomonas. He would need several negative cultures in row to convince the docs that its gone. However, if he does test positive for it again, they won't necessarily immediately consider him "colonized", but he will go on a Tobi cycle. What that means is that he would take an oral antibiotic 3 days a week ongoing, and then do 28 days on Tobi and 28 days off Tobi and round and round until we would be able to get a negative culture, if ever again. I really really hope we can get rid of it for 2 reasons. First and foremost, its not good for him to have. Research has shown that the longer a person can go without pseudomonas in their airways the better their lung function tests are over the long term (meaning slower progression of lung disease). And the second and more selfish reason is that that darn Tobi takes almost 40 minutes to administer, and he gets that twice a day...after the 40 minutes of his other breathing treatments and airway clearance.

In other CF news, I'm so excited for the next step in my Great Strides fundraising. I have 3 online sponsors who are donating a portion of their sales (and one even offering you a discount if you use promo code "drew"!) to the CFF. I'm talking with 3 other people too who I'm hoping will get on board and do the same thing. If you are reading this and have anything that you would like to offer toward my efforts, I will gladly and graciously accept! I have also found another CF mama who works for a place where I can get t-shirts made for the Great Strides walk at a very reasonable price. I'm volunteering for "Thank You Thursday's" with the CFF, making calls to large donors just to thank them for helping out. I think that's really exciting because I'm not calling them asking them for anything; I'm simply thanking them for helping in the search for a cure. And I think they will appreciate the thanks. I would!

If anyone who reads this is interested in or knows of anyone who might be interested in helping out in any way, please don't hesitate to contact me. So many people ask me "How can I help!". If you don't want to walk, that's fine. I have so many other suggestions and ideas that range from subtle fundraisers where folks don't even realize they're helping out, to outright calling your friends and neighbors asking them what they can give. Just email me or call me or whatever. I love when people want to help. It warms my heart to know that so many people care about my boy.

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