Sunday, February 27, 2011

Guys and Dolls



So last night Emily was truly amazing! She spoke at the Guys and Dolls annual fundraiser for the Cystic Fibrosis Foundation-Charlotte Chapter. The event has some "guys" and "dolls" who create packages (mostly mini-vacation/long weekend type) to auction off! There was a silent auction as well. In the midst of the live auction they had Emily tell her story. And let's just say there were grown men shedding a few tears! She told her story with such poise and truthfulness that I don't think she even realizes what an impact she has on others when she does this--but she does it because she knows the money towards research is her future! Right after she spoke they did "Bid for a Cure" and raised $20,000 in about 10 minutes--all from the words Emily shared from her heart. My mom was able to attend with us this time which was wonderful to have her there to see first hand how inspirational Emily can be when it comes to telling her story.

Speaking of mom--she and dad have been staying with us through this round of IVs. It means so much to have them here with us when the IV schedule can be draining on all of us, Emily especially. Having Grandma and Papa around make these long days a little easier and happier for her. As I sit here this warm and sunny afternoon, updating my blog, our sweet Emily is sound asleep on the couch. These treatments sure take a lot out of her but no matter how bad she feels or how sick she gets with her stomach from the antibiotics....she has a strength that is beyond words!

I have included a few clips and pics from last night's event! Thanks to the girls in the Charlotte office for their work on this event and thanks to all of those who attended last night--you made a difference in the lives of others!










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Thursday, February 3, 2011

Ready for 6 Weeks of Treatment!


So, we got back home on Wednesday and what a relief it was to sleep in our own beds! So Emily is doing tigecycline and imipenem by IV and oral clarithromycin to treat the m. abscessus. Last night was the first time she was on all three antibiotics and let's just say they have been rough on her stomach! Feel bad for the girl when she's like that! Started using the zofran before IVs this morning and that seemed to do the trick as she has felt quite better today.
So treating the m. abscessus is hard on a 10 year old. She is hooked up to IVs for 5 hours a day total and we are doing chest PT 4 times a day for 6 weeks. Not to mention all the regular meds and some extra vitamins here and there. Not much time in the day for fun when all of that is said and done. But, Em has a remarkable spirit and always seems to find the positive in things. If we all had her attitude and sense of faith and hope...well, let's just say the world would be a better place! Hopefully, this is the last time we will have to treat the m. abscessus!