Just a little update to wrap up this month... Team Lily's grand donation to the CF Foundation ended up being $11,168.41! You all rock! :)
Also, tomorrow marks 4 months on Kalydeco, the miracle drug.. On February 1st, Lily was skin & bones, she weighed only 28 lbs at 5 1/2 years old. Today, Lily weighs 35 lbs. Her ribs no longer poke out of her skin, her thighs have meat on them, her face is getting chubby, her cheeks are rosy pink, and she can breathe. :) That is all we can ask for. She feels GREAT! She wakes up in the morning with no coughing fits, after sleeping through the night with none either. She has energy, and can run around & do cartwheels without getting out of breath & coughing. Her appetite is better, although we still use her feeding tube a lot to pack on those calories. She graduated Kindergarten after missing 41 days & having to resort to homeschool. We have dropped one med, but still do all of her treatments & medications, even though the Kalydeco is proving its miracle. Maybe one day we can drop a few more, but that's a victory for another day.
Even though I can't say that I ever "forget" she has cystic fibrosis, I can say that there are many hours of the day that I don't think about it & it's amazing. People take breathing for granted... I know I did before Lily came into this world. Now I can see the beauty in everything. I've realized that most of my "bad days" weren't so bad & good days are any days that you can laugh with the people you love.