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Gracelyn’s Story

Gracelyn is 11 years old and has Cystic Fibrosis. She was diagnosed when she was 2 years old. Gracelyn is a strong willed fighter.. As of October 4th 2013, Gracelyn has had her lung transplant!

Latest Journal Update

October 30th

All the test results are back. Gracelyn only has rhino virus. Which they said, if you could choose a virus that is the one you want. Meaning, there is a lot worse things she could have had. She has no bacterial infection or fungal infection.

We then figured out that she developed a fever the same time every time, right as her rabbit infusion was ending. A fever is a side effect but it usually spikes when they start the infusion.

So, that being said, she is doing good. They are keeping her on the vanco IV just to prevent anything bad since her immune system is down right now. Her last dose of the rabbit infusion is Sunday. She is scheduled for PFT's Monday and then we will get the run down on all her 16 medications she takes. Some may stay the same, some will change. She is on a completely different dose for her insulin since she had all those doses of steroids.

They told us we can be discharged Monday evening and leave Tuesday early morning.

Thank you for all who sent the greeting cards. She received 37 of the today. She smiled ear to ear reading every one of them. She even had one of Vince's friends offer to come visit her in Houston ( if his mom let's him :-)

She was down again today about Halloween because she didn't have a costume. I waked to Target and found one for her, along with a few decorations for the room. I told her I had a surprise every hour for her this evening... A bracelet, nail polish, a beanie boo, earrings, a Halloween owl......I am waiting on the last surprise to get here. Our surprise to her is, Sonny is on a plane right now coming to see her. She has no idea (I hope)

I am going to video record the moment she sees him. She will be so excited. Her infusion in done around the same time he should be here. We have been walking the halls after the long infusion because she has become very restless being stuck in bed for hours on end. I am hoping we will run into him on our nightly walk.

I'll post a picture of her in her costume tomorrow.