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Hi imported momto2, We do manual cpt once a day and vest once a day. Mostly just for the variety. My daughter isn't certain if one is more effective than the other so we just split the difference and do one of each :) Hey Jet, Sorry to hear you lost your brother as a child. This is not an...

What a beautiful video! Thanks for sharing your story, Jan.

Thanks everybody! I thought the video really portrayed the isolation aspect of this disease. Best to all, Shay

You guys are all awesome! Thank you.

Hi Believingjesus, This forum is for the discussion of ideas. Please don't think that just because someone has a differing opinion that they are trying to "control you". You are taking things personally that shouldn't be. No one is judging. But people CAN disagree. Let's PLEASE leave out the...

Hey all, The Cystic Fibrosis Foundation has a new video series to raise awareness called "Living Today, Adding Tomorrows". My daughter was featured in the most recent release, so being the proud mama that I am:o, I thought I would share it with the group. Here you go...

Thanks Wcherri for posting the CFF guidelines for everyone. I am well aware of these and feel that the guidelines for the disposable nebs hurts our cause. Even reusing a neb for 24 hours is not ideal. I wish the CFF would have come out stronger and stated to throw disposables out after a...

Thanks for everybody's responses. Keep them coming! Dot, I think that the problem you stated is the reason my hospital reuses nebs--to save waste on the expensive meds. But to a parent or patient, I think we would rather waste a little medication rather than risk a dangerous and possibly life...

Hi All, I am working to improve infection control procedures at my daughters hospital and I would love your input. At home, after every treatment, we clean the respiratory equipment with dish soap and hot water, rinse, then use the AVENT sterilizer to sterilize the nebs, and air dry them on a...

My daughter is 18 and her port is placed on her side under her arm. Her pediatric hospital does this for the girls so that they don't show on the chest which is really nice. You can absolutely see it in things like string bikini top and the like, but it is not on her chest. The disadvantage...

Hi Randomgirl. My daughter is 18 years old and is on her second port. Her port is placed on her side, under her arm. Her pediatric surgeon does this specifically for the aesthetic reasons you mentioned. The only time it really shows is when she wears a bikini or halter or something, but it...

How does the Incourage compare with the SmartVest as far as noise level goes? My daughter has a SmartVest now and was thinking of upgrading to the smaller quieter new SmartVest, but wanted to know more about the Incourage. Thanks!

Hi Melissa, Me again... My daughter wanted you to know that her vest DOES cover her inset but that she is still able to use her it with no problem. Shay

Hi Melissa, My daughter also has the Medtronic pump which she loves. She has the SmartVest and is able to use it without difficulty. Her inset is usually at belly button height or a little lower and her vest does not interfere. She uses her vest once or twice a day with no problems. Feel...

Does the shower shield and the aqua guard really work well? My daughter has a port and has been taking baths for years when accessed and waiting to shower when she is de-accessed for a dressing change. This would REALLY help when accessed!!! Do they really keep everything dry?

Hi Jenny, Can you email me too? shaycray@comcast.net Thanks!

This is great news!!! None of this research would be funded if not for the CFF. It's the only show in town. I understand the frustrations mentioned by others, but if we want a cure, this money will really help.

Just a tip, we use distilled water in our sterilizer to avoid mineral deposits from our tap water.

We have been using the NUK baby bottle sterilizer for a couple of years now ever since CF Services Pharmacy sent it to us with a Cayston delivery. We absolutely love it! It is very convenient and portable.

Me too! Thanks for taking care of this.