Sunday, January 8, 2012

Long time, no blog

Happy New Year! It's been some time since I've been on here with an update on things. I'm happy to report that we remain mostly status quo. The funky nose that we've been dealing with remains, but it seems to be a CF sinus blockage issue rather than any kind of bacterial infection (win!). We are on a nasal steroid now and regular saline nose spray, and with regular suctioning of the nose, are getting by. I'll probably talk to the doctor again this week to see if there is something else we should be doing to help get this cleared up. I just feel bad for Drew and his poor little snotty, chapped nose. Hopefully we can solve this problem like we've solved most of our other ones.

Tomorrow I'm meeting with Ohio Senator Rob Portman. I had put in a request for a meeting back in July during the "Make Every Breath Count" campaign, and in just 6 short months they were able to get back to me to schedule a meeting. I guess maybe they hope that people will forget what they wanted to talk about or change their mind about meeting on some hot button issue, but I said I still wanted to meet, and tomorrow is the big day. I flying solo for this one, but I have confidence in what I'm talking about so I'm not to worried about it. While some of the issues have changed, I'm still just asking for their continued support of the FDA and the NIH as cuts to these departments of government would be detrimental to the health of so many people, both with CF and otherwise. I also can't wait to tell them about the new drug coming out in April (pending approval by the FDA of course) that will be a game changer for so many people with CF and a medical breakthrough for so many genetic diseases. At first I did think it was a little silly to meet with them right now since I'm not asking for them to vote one way or another on any specific issue, but then I thought about how important it is to let any and all decision makers know how the very people they are representing feel about issues that are important to them. If I don't tell them about CF, who will? They need know who they are affecting with the decisions they make. It's their job to listen to people like me.

Its almost fundraising season again so get ready for me to come knocking on your door asking for help and support. If there are any other CF families who are reading this who are interested in participating in a huge CF Tupperware fundraiser where you will earn money for your team ( that's right, your team, not mine), shoot me an email. I was able to connect with an amazing Tupperware consultant who is hosting a huge fundraiser for the CFF in February where up to 40% of the proceeds will go to our cause. 40% is no small amount so let me know if you want to participate and I'll hook you up!

In other news, the twins are quickly approaching their second birthday. I am going to have a party for them this year, but in February, as their real birthday (March 14) is just 4 days shy of Quatro's due date. I suspect I will have no interest in hosting a birthday party 40 weeks pregnant. Last year I got freaked out about germs that other kids might bring and just had family, but at this point our friends and family know well enough that they just need to steer clear if they aren't feeling well or have something Drew could easily catch, and frankly I've calmed down quite a bit on the germaphobia. We still use a lot of hand sanitizer, or hanitizer as the kids call it and try to avoid situations where picking up some unwanted germs would be likely, but I'm trying my best to just live our lives as normal as possible. We still wear masks at the doctors office and Clorox wipe down high chairs and tables at restaurants and shopping carts, but at least we are going out!

So that's whats been happening here lately. I'll update on my meeting with Senator Portman after my meeting tomorrow. I'm bummed that I won't be making it to the CF Foundations Advocacy Campaign "March on the Hill" in DC this March, but we have something a little more important happening. I'll continue my advocacy efforts as strong as I can, and if I can ever help anyone in any way, please don't hesitate to ask!

Its 8:45 now, so off to bed for this lady!

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