I feel like I NEED answers. I need to know if these drugs are going to help Ginger. Are they going to be released. Are they going to work forever. I’m driving myself mad. It all started the beginning of this week when I was suddenly over come by complete and total anxiety. It was the kind of anxiety were you feel like you should maybe start calling everyone you know and make sure they’re ok. It was late and I wasn’t about to start waking people to make it go away. I knew what it really was and she was just in the other room sleeping like an angel. Breathing in and out lightly in the moon light. I went and checked on her twice. Sat on the couch, got up & fed the cat, sat down, got up and cleaned the kitchen, sat down and decided I would FIND hope. I would look under every rock for what I needed. I emailed all my knowledgeable CF moms I posted questions on CF boards and websites. I got no relief that night… The next day at nap time I started again I emailed a Dr in Israel that works with this study I’m obsessed with. I wait and wait. I get a reply! Nothing. He too hopes for the best. It looks promising… I hate the word promising. This is all they all say! I want more. I want to know what it is doing for those on it. I want to know every side effect. I want to know the truth. The drug I’m talking about is Ataluren or PTC124. Today the feeling still would not cease so I emailed the foundation and the pharmaceutical Co that is working on the drug. Now I sit and wait. What am I waiting for? I know they can’t and wont tell me anything I don’t already know. I have read everything I can and that is all they will tell me. I did find a girl that is doing the study and she writes a blog. She is wonderful and told me that she thinks she got the placebo and was taken off the study for now because she was having problems with nausea. http://littletadpole.blogspot.com/2010/04/ptc124-screening.html I know I’m not going to get what I need to get rid of this feeling. I’m going to have to climb out of this rut on my own. No one is going to pull me out. I hate anxiety but I do have to say that at least I have something to put my hope into. Hope is so important in this. Hope is fragile and so easily smothered. I wish people would watch what they said to me. I need the hope I’ve worked so hard to call my own.

In other news Ginger has learned to use a fork and she rocks at it! She is so cute and proud of herself. She repeats everything I say and can pronounce words you would never believe! Today she pointed at a picture of a baby boy in a book and said, “Whats dat boy?” I’m so proud of her. She is everything. My sunshine.

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