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Emily’s Story

Emily was diagnosed with Cystic Fibrosis (CF) when she was three years old. The doctors told her parents that 10-18 years was a likely lifespan for her condition. But science don't know. Emily is turning 28 this year and is a wonderful mother to our 4 year old son, Jake. CF is a progressive disease and she recently took a significant turn in her condition. She was recently put on oxygen while sleeping, but that quickly gave way to full-time oxygen dependency. While this is not a welcomed change, it is certainly not the end of the line. We have just recently met with the transplant team at Emory Hospital and are beginning to prepare for Emily's eventual double-lung transplant.

Latest Journal Update

Mooovin' on Uppppp! To b585

Hey everyone its been a pretty impressive day for Emily! She is now able to get out of bed (with significant help) and sit in a chair comfortably. She is off of all the cumbersome machines that monitor everything from her blood pressure to her c02 levels and everything else in between. She still has some wires sticking to her and off of her, and coming out of her, but compared to what she was yesterday I'm really amazed. She also go the main line removed from her neck. (Have you seen Old School? Remember when Will Ferrell shot himself in the neck with a tranquilizer gun? Yeah. It looked like that. Creepy.)

She is able to consume solidified fluids. They take some magic powder packet mix it to Hogwart's exact standards, and voila, you've turned crisp, refreshing Coke into sludgy, thick but still refreshing, Coke(ish).

She is also able to eat. She had chicken for dinner with some sweet potatoes and green beans and some pound cake.

In fact, she has done so well that they have moved her OUT of the ICU and have moved her up one floor to the "long-stay" recovery unit for transplant patients. "So what does this mean to me?" I'm sure you're asking yourself. It means that you now have many more opportunities to come visit Emily!

If you've been to see her already, just use the same elevators and go up to the fifth floor, take a right, and look for room B585. Knock on the door, when you hear someone say "come in" (or something to that effect) gown up, scrub down with the uber-fun foamy hand soap and then you are free to visit for as long as Emily can handle!

She still has the tubes draining fluid from each side of her chest, and is experiencing some pretty intense pain (she's a 5 on a scale of 10) But she is on the minimal pain medicine, which is a good thing, and has a button she can push when she feels she needs some pain relief.

She's much more comfortable in her new room, and I'm REALLY hoping it will make her easier to deal with. (But i'm not counting on it)

That's all I've got for the night. Thank you all for all of your support, donations and prayers. They have been answered. Please continue to spread the word about Emily, as her medicines will be expense for the rest of her life.

Thank you and God bless,

Matt