Well I have been just laying low and just praying and watching. So I wanted to share with everyone what's been going on with Abby since I haven't posted results in a while. We have changed how we give her the Kalydeco as suggested by someone either on here or facebook, I can't remember. We now give it when she is about 3/4 of the way through with her meal. So still NO cough and NO sniffles!!! Can I get an AMEN for that one!! Very excited about that!! But she has been blowing about the same with an occasional 1.65, 1.63 but I always blow them off thinking that the machine must be messing up or she must be tricking it somehow. So last night she blew a 1.62 twice!! So I am now allowing myself to get a little excited about that, but still just a little. I want to see it on TX Children's machine, then I can really get excited!! Remember she started at 1.41. So now starts another real test....SCHOOL. We usually always have a hospital stay between Sept and Dec every year. Praying we don't have to have one now!! Time will tell. Just wanted to give everyone a little update. We have a clinic visit on Sept 22 with Dr O, and will ask him to order another sweat test at a different facility so that we can get real #'s and not just greater than 100. I think that this will be a battle, but one that I am willing to fight. I also hope to sit down and talk with him about why he is being so negative about her results, and hopefully we will both come out smiling and understanding each others position. We will also ask him to do a blood draw to test her liver function, and of course see if he will still prescribe her Kalydeco or if he is going to cut her off. I will let everyone know!!
we are so sad and confused! He also gave us her 2nd mutation, it is a class I stop mutation called 2585 delT or R785X. Our dr said that all of our wonderful results are just a coincident and says that Kalydeco is not working for her. I'm so confused! Her PFTs and no cough and no sniffles are amazing! Really confused!