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I did not know that Bill! Good explaination....Thanks :)

I agree with all the above posts and don't really have anything to add other than the two that commented to your post are both amazing people and I would trust their advise 100%. I just wanted to say that I think that is amazing what you are doing and I am so happy your family and your soon to...

It happened to Abby about half a year ago and we didn't expect it at all, she had no symptoms. The dr put her in for a "tune-up" on IV meds and what ever bug dropped her PFT must have been zapped by the IV meds because Abby bounced right back to her normal PFT's. Hope she gets better soon!!

We have a trampoline that my kids practically live on when they are outside and talk about getting them breathing hard and all the jumping and knocking their bodies around when they bounce on their backs and tummies, I feel like really helps clear out gunk. I try to jump with them occasionally...

Abby really hasn't had any side effects other than she had a rough (not sore) throat two mornings out of the almost 2 months that she's been taking it. Sorry he is having so much trouble :(

I'm not sure if this will help or not but we have good insurance and are with a large company. My husband is a Sheriff's Deputy that works for a large county so the insurance is great, but we were still having trouble keeping up with all of the surgeries (15) and all of the hospital stays, and...

Wow Allansarmy that is awful!!! It's terrible that people and teachers would be so cruel to such an already awful situation!!! Makes you wonder what on earth these people are thinking? I am glad to hear that our clinic docs stuck up for you though, that makes me feel a little better. Here...

Abby has major issues with sinus polyps and since being on sinus rinses, nasal steroids, and a good air filter she has not had many more issues with it. I think the sinus rinses are a great idea, it gets the gunk out that causes the irritation, that causes the polyps :)

Well, if you don't meet with the school ahead of time, who is going to monitor his meds? You can't just drop him off without knowing, and the first day of school is not a good time to try to have a serious conversation with his teacher due to the mass chaos that the teacher will already be...

Hi!! We have a meeting before school starts every year with her principal, nurse, PE teacher, and teacher. I give them an update on what has happened over the summer and bring a letter from her dr and a list of my concerns. We go over her 504 plan and see if we need to amend it in any way...

Welcome to the group!! Hope you are doing well!! :)

Abby has been doing them for a couple of years now and each time varies. Usually it is clear unless she is congested sounding and then look out cause it is going to be full of nasty yellow and green drainage. I have found that it helps to switch sides numerous times and let her blow in...

My daughter is a pro pill popper. She takes 7 pills at one time. She has been doing this since she was 2. And I'm the one that has a hard time swallowing pills...co-figure. LOL But I'm glad she is, and she tries to take them without water but I don't let her just cause it scares me. :)

I don't care for it. I liked the other one better.

As always your kindness just warms my heart so much!!! God bless you and I can't thank you enough for all the much needed support!! You always make me cry HAPPY tears!! God has blessed us with such amazing people in this world, including our little CF champs!!

I think that it is obvious that the original poster is no longer with us anymore. I think everyone would show a lot of class to let this thread die.

Yes pjammer65, thank you so much for sharing!! And GenH you are so very informative as well!! Love your posts!! <img src="i/expressions/face-icon-small-smile.gif" border="0">

Yes she started Kalydeco on June 28th and we started with an FEV1 of 1.41 and as of right now she is blowing anywhere from 1.48 to 1.53 depending on what kind of effort she feels like giving me at the time. :) Also Abby has really bad sinus' and Texas weather has been really crazy this last...

I was told this is a very rare mutation and just wondering if anyone else on this forum has this mutation. :)

Kalydeco gets EMA approval (Europe) & Vertex has applied to the TGA (Australia) and the TPD (Canada) That is fantastic news!!