Tuesday, April 20, 2010

Periactin is back.....

So the pharmacy thing finally got sorted out, so Periactin is back on the menu. I have to start giving it to her again....I was having second thoughts about it because initially there was little to no change in her appetite, but after a while of going without it, I can definitely tell a difference, so here goes. Tonight the only real difference is that it knocked her out, I hate that part...luckily it wears off after a day or two....her weight falls off so quickly, plus with her being sick so much lately, I have to do everything in my power to make sure she is eating enough, and if this helps, then I'll take all of the help I can get.

A big shout out to all of the CF Mommies out there! Thanks for joining, Thanks for accepting/adding me. I have the sincere belief that there is power and knowledge in numbers. Working together I believe we can extend the lives of our children through networking our ideas, what works, what doesn't, and increase fundraising through awareness. Thanks to Breck for pulling us all together!

Natalie and I went to the park today while Caitlin was at dance class. I chased her around with the camera, as usual. The child loves to have her picture taken, and i am happy to oblige. She loves to swing, she says its like flying. I watched for a while, then took the camera and took pictures from every angle. I wanted to remember, I wanted to save the moment, her blonde hair blowing in her face, laughing as she was trying to swing high enough to kick me, her smile as she looked up at me. People can say what they want to about making sure that their child feels normal, but to me she will never be normal. I'm afraid, desperately afraid that I wont remember every moment, that her life will be short and I wont have every second to rewind and play over and over when she is gone. I want to remember. And if the time comes between now and then that (God willing) a cure is found, I still want to remember, that way I can show others what it was like before.....what a thought that is, to possibly have the ability to show someone what life was like BEFORE a cure for CF was found....*sigh* that's a lovely thought, I think I'll stop there and soak in the idea, no further thoughts needed for the night....

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