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Hi guys, I just watched 65 Red Roses and was wondering what you all thought of it or took away from it. My husband did not want to watch it which I totally understand, I however crave knowledge!! Yes, I cried the whole way through it but I feel like I came out understanding so much more about...

OK... so you all are going to get tired of my updates but I am just so excited!! When I got home yesterday afternoon I had her do some PFTs for me and this is what she did: 1.52.......1.51........1.49 up from a starting PFT of 1.41!!!!!! She blew a 1.52 before but I didn't believe it because...

Go Kalydeco!!! Marci, that is amazing about your sweat chlorides!!! I do hope you see better PFT's!! I was pleasantly surprised last night....I got home from work and had Abby do a few PFT's for me and this is what she did.........1.52.......1.51........1.49!!!!! SO EXCITED!!!!

cabadie1 Abby was and is pretty healthy, her dr only put her on it because he knew that I would not rest until he let her try it. And yes she is still doing all of her treatments as this is just a trial and we are not certain that it will or is working. I am trying to be skeptical but it's so...

I second what Marci said!! Abby has been on it for 19 days now and I am trying to be very skeptical but her PFT's are looking great, and she has not had a cough or sinus drainage which is huge for her!! We go in for sweat test next week. Good luck to you!! And I hope you are able to get on...

Marci that is amazing!!! While I don't think Abby's will look that good...I am hopeful that it will have dropped!!

Abby has had 10 sinus surgeries and I am thankful we did each one. I've never heard of them being dangerous like your dr has said. I was always told it can b dangerous to leave them too long which is what happened with her. Her polyps ate through the bone in her sinus cavities is what we were...

Best of luck!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

No I haven't thought to try that, but I will be trying it when I get home!! Course I have no idea what she did before. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I would love for Abby's story to help others!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Ok so yesterday she blew a 1.46!! And more good news is she is due for refill on the 15th so I called insurance to see if I needed to get a prior authorization and they said no ma'am she is good for refills until June 2014!!!! I am one excited momma right now!!!! Watch out CF cause we are...

Good!! I am so glad that you finally have a plan!! At least you can have a little piece of mind knowing that something is in the works. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Thank you so much!!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh my goodness!!! Julie that is just unbelievable that the Boston dr has not gotten back with you yet!! I would be beyond angry!! You went all the way there for help and he agreed to help, but now has put you and your son on the back burner!! I am so sorry that you are having to go through...

I am wondering if any of you out there taking Kalydeco that do not have G551D had before and after sweat chloride checked. And if so would you mind sharing your experience with me? Abby will be getting her post Kalydeco sweat test done the latter part of July and was just kind of wondering what...

That's kind of what I thought, but was second guessing myself because they used the word "significant decrease" and 6 points is not significant to me either. Thanks for giving me your input on the subject. At least I can use this with her dr, I think I will have a fight on my hands if she...

Well Abby is on day 13 of Kalydeco. I am still not sure if it is working or not but these are some of the things that I have noticed. Her PFT's are up again!! She blew a 1.45, which is the highest she has ever done....that being said the next day she may only blow a 1.33...so not really sure...

Lisa, thanks so much for the web address! I just purchased a Piko 1 meter a couple of months ago and it seems to be fine but isn't near the machine that the one your talking about is. I'm pretty sure I will be getting a new one. <img src="i/expressions/face-icon-small-smile.gif" border="0">...

Prayers going up to a wonderful family. God Bless you all! I can not begin to imagine what you all are going through!

If her baseline is "no cough" I would call back and talk to the dr to see what you can do to get her back to baseline, especially if it is bothering her and has gone on for so long <img src="i/expressions/face-icon-small-sad.gif" border="0"> Maybe a round of abx to treat the "just staph" is...

Love, love, love to hear all of these wonderful things!!! I wish I could tell if it is helping my little one. I haven't noticed any change what so ever. But she is not a cougher, and she just got over a little bug that we were on Clinda for. But I am so happy for you. Keep us posted!!!