The number 80

I haven't blogged for a while. Life takes you to unexpected places, and these 2 girls keep me more than busy! I blog when I want to share a great deal of information, or need to get stuff off my chest and can't have the same conversation 20 times. Today we had the highest highs, and some really low lows. Maybe it happens that way so you find peace in a tough situation. We got a repeat, repeat, repeat, sweat test done for Zoie on Friday. She had two As a newborn, one 3 months ago, and one on Friday. Only 2 of the 4 have come back with results. Her newborn one read 36, Friday's read 80. What this means..... 36 was very low. If that's all we had to base her CF off of, we would say she doesn't have CF, but genetically she did, therefor she was on the cusp of having it. We wanted to do a repeat now to see if levels had changed, or if her CF had changed and what we needed to do as she gets older. Friday's was an 80. A ton higher than 4 years ago. This is bad, and good. 80 confirms she has full blown CF, and we have to start, well I already do at home, but doctors have to start treating her like she has CF and it's progressing. I'm still not sure what to think of this, except that I will continue to everything in my power to keep Zoie's lungs healthy and clear so they don't keep getting worse. I feel like I do my best, so that will continue. Because Zoie has 2 different mutations for her CF, her pancreas is still not affected, but her lungs are. We knew this, but I will no longer say it's mild. Maybe this was Gods way of once again slowly giving us info so we could slowly digest it. We will add a normal CF med to her routine called pulmazime, when she turns 5 that will help her lung function and keep up with her vest treatments. The good news about her 80, is that she is a candidate for Kalideco, the new CF drug that is out to help make mucus less thick, and clear away some of that salt so her lungs can function better. Zoie is so complicated, but that's what makes her Zoie. My sweet girl. I wish we could just say, yes, start the med. unfortuNtly we have to do tons of research and see if it will react with any of her seizure meds or what not. If it will, it's a no go, and we continue to raise funds and money for another drug. If it won't interact, we will most likely start her on it and see how it goes, keeping an eye on things with regular blood draws. I have mixed feelings about all of this. I'm sad, but I'm happy. I hate CF, and it's complicated, but we will always do what's best for her. Right now, we aren't sure what that is, but we will know soon. In the meantime, since I'll have my CNA and be employed to care for her, I can finally get nominated for Colorados Finest to raise thousands for the Cystic Fibrosis Foundation. I found this out today, and you better believe that between that and our Great Strides walk, I plan to raise tons to help with so many families who are dealing with this on a daily basis. I pray there are no interactions they can find with the Kalidiko and seizure meds because I want my girls lungs to stay as healthy as possible! Thanks to everyone for sharing this journey with us, and standing by us!