Oh it is all it's cracked up to be!! We just have nothing new to report
Abby has been on off-label Kalydeco since June 28, 2012. We live in TX and the cold fronts this year have been brutal and not with the cold but with bringing allergens in!! So she has been sick along with everyone else every time a cold front blows in....the difference.....she gets over it!! March 1st will be 1 year since she has been in the hospital!!! I still can't believe it...Abby is one that goes in twice a year ever since diagnosed at 2!! She has had 15 surgeries mainly sinus...she had a constant sniffle and cough due to the sinus drainage. Now she only coughs and sniffles when she is sick!! We went to a family renunion last weekend and everyone kept coming up and saying I haven't heard Abby cough at all....that's amazing!! This mom was smiling ear to ear!! Her before stats were this: FEV1 - 1.41, BMI - 49%, she cultured MRSA for 2 to 3 years and sweat chloride of above 100 (we tested twice but their machine would not read over 100 so we are not sure of her exact #'s, we do know that when she was 2 it was 109).....ok so now the new and improved Abby: FEV1 at clinic was 1.47(but she has been sick with allergies and RSV and Rhino virus every time we went in
), at home the highest I saw on her Piko 1 was 1.62, her BMI - 59%, she no longer cultures MRSA, and her sweat chloride is 88 and 91. Now the RSV dropped her PFT to 99% and had her coughing a lot but.....she fought it and the Rhino virus off on her own at the same time!!! That would have for sure landed us in the hospital before!!! She is so much healthier!! The bad thing for us is that her Dr doesn't believe us and doesn't care to hear her improvements...it is so disheartening...but he is one of the best in TX. He is letting her stay on it and is taking care of her it just breaks our hearts because we thought he really cared about her and he has just totally shut off the personal side where before it was great
He basically comes in does the vital check up part and listens to problems but doesn't care to hear the good. Well we have an appt with him on March 1st which is our 1 year anniversary for hospital stay....and you better bet I am going to bring it up....and I pray these cold fronts are gone by then and he can see the PFT's that I saw at home!! I am not sure what the future holds but we are going to keep going to him until he does something to jeopardize her health just because I do think they are the best in TX. Of course we as her parents see the difference and are beside ourselves...but when someone else notices it still brings chills up my spine! Now having said all of that I know that it is not doing for her what it is doing for all of those lucky ones who have the right mutation....but God has blessed us...because I can't imagine going back to the way things were. She is so much healthier than before!!! It is real folks!!! And they will get our "cure". God is so good!!! He has all of these wonderful people fighting for us!!!
