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Update Time, getting close to clinic (pics too)

Update Time!

I have CF Clinic on November 17th and I'm very much excited about it! First of all, we always shop and eat out at one of my favorite places in Glenveiw! We (my uncles and I, or Ryan and I, or Mom and I- that is who I always go with) pretty much make it a whole day affair!

This Clinic will be extra exciting, since I will have stories to share. Snce my last Clinic I ran my FIRST 5k (and finished it- read about it here to read my blog about the 5K I did!)! So I'm taking Dr. B this picture in, along with a story about my journey (getting to point where I could run a 5K) to put in the newsletter!

AND I did the CF Walk with a TEAM this year (where we raised $1,200 -so proud of everyone!)! The coolest part about the walk, was seeing all my family and friends coming together, even lots of them hadn't met (friends from high school, youth group friend, theatre friends, family, and college friends)!


Also, I'm pretty proud that my weight has plateaued at 104 lbs. I'm trying to get it to 109 lbs. before clinic, and even though I haven't been able to put a single pound on in a couple weeks (since I started waitressing), AT LEAST it hasn't gone done a pound either.  I've had days I was so busy, I'd forget to eat all my meals &  about 2x  a week I skip my feeding at night (as a lil break from it) and I still don't lose weight. So that means my main weight is at 104 lbs and will most likely stay there now, until I can get past it and gain more.

Considering since 2003 I have struggled to keep it above 92 lbs. I'm very pleased! AND hopefully my upward trend in Lung Function will increase from 61% to 63%!

SOOOOO Excited! A lil nervous, but very excited! This Clinic has the potential to be amazing! :-) I almost don't want to wait the 2 weeks!

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