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This sucks! No other way to put it. I've been praying for a miracle and hoping against hope. My thoughts and prayers continue for the family, Jenny and you Jenn.

Here's what we were told... Always try to do your Pulmozyme at the same time. It doesn't matter if it's am or pm just try and do it at the same general time everyday. Sean does his albuterol and pulmozyme while he's doing his vest which is what we were told to do when we got the vest. The...

Sean's Dr. wants him to start on hypertonic saline. She wrote us an Rx but our local pharmacy (CVS) can't get it. She recommended going through the CF pharmacy but our ins. won't cover Rx's from them because it's mail order and they use their own mail order pharmacy. Where are you all getting...

Nice job on the web page; not tacky at all.

I'm disappointed to see that the anonymous posting is back. I hope it's only temporary because things have been rather peaceful around here with out it.

Hi Julie, Well, yes, I think it is a little tacky and as a few have mentioned you did know what you were getting yourself into. Of course, anyone that's ever engaged in sex has known the risks so why should you be treated any differently. You have three little miracles on the way and now is...

Today Sean is 10! This is big for me because when Sean was first diagnosed @ 12 weeks old we were told he had PA. The Docs were very tight lipped about what that meant as far as Sean's long term prognosis except for one of the residents. He's the one who very callously told me about PA and...

Learning your triggers is the best thing you can do. My oldest son's triggers are dehydration and lack of sleep. Other common triggers are red wine, NutraSweet and hormones. Many women suffer from monthly migraines due to fluctuations in hormones. To lessen the effects of hormones, my Dr...

OMG!!! Yes, Sean prunes up like you wouldn't believe. I'm not sure about the time it takes but he is so much more "pruney" than anyone I have ever seen.

I miss SeanD but I can't say I miss GaryHairy Cheese or Love4Jesus (I think that was it). Curious that they're all gone at the same time isn't it? Sean did bring a lot of good info to the board especially his posts about OO. Unfortunately, I think he also brought some negativity to the board...

Yeah, that kid on the harmonica is fabulous and he's quite the entertainer. I love their energy. What was up with the dog guy last night? He seriously flopped. I also liked the yodelling little girl and All That (the clogging guys).

They typically only treat when you have flare up.

I'd kind of forgotten about this... Like Sheri said, it's Early On in Michigan but whatever it's called in your state, you should take advantage. We were worried about Sean's speech development and were afraid he'd suffered hearing loss due to the antibiotics he was on when he was first...

I just have to wonder... "Would all these people be equally as pissed off if a CF related issue was posted in the off topic section?"

Very well put, Beck. I couldn't agree more!

Julie, You know I support your friend and have offered my thoughts/wishes/prayers. As far as posting in the Adult and Family section, who gives a crap? I try to read as many of the postings as I can but, admittedly, only occasionally make it to the off topic section. I am trying harder to...

Very well put, Julie. I will certainly keep Melson and his family in my prayers.

One of the mistakes we made early on with Sean was misunderstanding why he was on a particular med. Sometimes in the case of CF drugs aren't being used for the traditional indications. For example, we had decided that Singulair wasn't for Sean. He had no asthmatic symptoms so why give him...

no more "anons This has been discussed many times before. I truly believe now more than ever, we need to abolish the anon post. I know some people don't want to register but let's face it, we've got a lot of registered users posting as anon to stir the pot. Not to mention, there are very few...

Escape from "Care Bear Land Fred, I like you have been disappointed with the name calling/flaming/bashing/poor taste of many threads/discussions on this forum. I'm ashamed to say that I've even joined in a few of these threads. Instead of leaving, which I have considered, I've decided to...