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Hi Jen, I think we've spoken before but I'm not 100% sure. I'm really sorry to hear about all the trouble you're having with your local CF docs. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Sounds like a mess, and there's nothing worse than being made to feel like you're not...

Hi Jen, I think we've spoken before but I'm not 100% sure. I'm really sorry to hear about all the trouble you're having with your local CF docs. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Sounds like a mess, and there's nothing worse than being made to feel like you're not...

Yup, count me in! I love Cayston, but man do those tops stink. I'm on about my 5th round of Cayston and the darn thing still got me! You'd think I would have learned by now. Sliced the end of my thumb just right and it hurt for days! And yes, I've used my teeth, a fork, and a corn cob...

Yup, count me in! I love Cayston, but man do those tops stink. I'm on about my 5th round of Cayston and the darn thing still got me! You'd think I would have learned by now. Sliced the end of my thumb just right and it hurt for days! And yes, I've used my teeth, a fork, and a corn cob...

<div class="FTQUOTE">Originally posted by: Beccamom There are many types of hearing tests and I would recommend familiarizing yourself with them. I would ask for an ABR test with reverse polarity very quickly becaues in a very young baby this can be done by the better hospitals while the child...

Thanks Melissa your words helped a lot! I really appreciate it. Lauren, yes I always worry about Tobra. I don't neb Tobi due to bronchospasms but still use IV Tobra for exacerbations. Luckily I didn't need IVs while pregnant so we didn't have to make any tough decisions regarding whether or not...

I saw this too Carly, thanks for posting. The title of her documentary is "Love on the Transplant List". It aired in the BBC but not in the states. For some reason I never even thought of looking for it on youtube! I'm glad TLC is airing her story, however, I'm not sure if it is the same...

I saw this too Carly, thanks for posting. The title of her documentary is "Love on the Transplant List". It aired in the BBC but not in the states. For some reason I never even thought of looking for it on youtube! I'm glad TLC is airing her story, however, I'm not sure if it is the same...

done! Good luck!

done! Good luck!

Lauren, thanks a bunch! I am very hopeful too. I will most definitely keep speaking to her! I completely agree about not being sure what she actually hears and the accuracy of the test. I'm glad they will be repeating the test before officially moving forward with hearing aids etc. In fact...

Thank you so much for your kind words everybody! :) I really really appreciate it. I will definitely keep you posted as to what happens next. Caroline, thanks, that is what I keep telling myself! She will still lead a fulfilling life whether it turns out to be moderate to severe loss, or even...

Leapling, I was also told that it was rare. I suppose we could be distantly related! <img src="i/expressions/face-icon-small-smile.gif" border="0"> I got the mutation from my mom who is of German and Dutch descent. The good news for us that I do happen to know is that it is currently on...

Hello again everyone, Our daughter failed the newborn hearing screening and we have been seen twice for more extensive testing. Yesterday they finally sedated her in order to be able to complete the test. Even with sedation she still woke up after only an hour, just as they were finishing the...

I have the exact same problem. I have to enter it twice. Then what I'm searching for doesn't come up, although I am 100% certain it is on the forum somewhere! Strange. Since Frank isn't having any problems maybe we are doing something wrong?

I have the exact same problem. I have to enter it twice. Then what I'm searching for doesn't come up, although I am 100% certain it is on the forum somewhere! Strange. Since Frank isn't having any problems maybe we are doing something wrong?

Thanks again everyone. I haven't tried the generic yet but will post when I do. I still have some brand name, I was refilling early since my insurance changed and wanted to make sure it was covered and I didn't need to make a bunch of phone calls! Leapling- we share a mutation, S945L...

<div class="FTQUOTE"><begin quote><em>Originally posted by: <strong>Havoc</strong></em> kinda hard to screw up salt water... ETA: You mighjt be able to get it much cheaper if you go to a compounding pharmacy and have them mix it up for you.</end quote> Ya, I figured it's pretty hard to screw...

Hey everyone, I just got home from Walgreens and I'm bit perplexed. Instead of Hyper-Sal (brand name hypertonic saline), I was given Sodium Chloride Solution 7%. I had heard that CF Services Pharmacy had a generic for Hyper-Sal but didn't know it would be showing up in retail pharmacies...

Hi Jeana, I have been following your posts and about your recent tribulations health-wise and I'm soo sorry that you now have to deal with this on top of everything else! Insurance and financial issues are so stressful! Ugh. I know that Julie on this site is now helping people with...