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Emily had clinic today and everything was great...except our pulmo saw what she thinks MIGHT be nasal polyps.  What she saw, combined with two statements from Emily ("nothing smells like it's supposed to smell" and "I feel like I have to blow my nose but nothing comes out") are leading our Dr...

OK. I am up listenting for a cough or a cry. Emily has strep throat, but now a cough has started, and I suspect I will get little sleep. So, I'm going to attempt to post our montage here. It usually doesn't work for me, so we'll see. Emily and Isabelle picked the songs this year. Not what...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.jsonline.com/sports/packers/106419973.html ">http://www.jsonline.com/sports/packers/106419973.html </a> Here's a link to a story from my local newspaper about Green Bay Packer Clay Matthews' involvement with a boy who has CF...

Emily has decided that it is just not "exciting" or "fair" to have to take vitamins that don't come in fun shapes like her sister's vitamins. She asked me to help her write a letter to the "doctors who make the vitamins" and ask them to remedy this. So, we will sending a letter to Vitamax (CF...

I read (on facebook, I think) about a CFF sponsored Parents Night Out. I'd love to get something like that going in my area. Would any of you who have them in your areas please share general info with me? Location (restaurant, meeting room?) Pay for your own/sponsored? How are invites...

This is for any adult (or older kid with a g-tube)... After running around with the neighbor kids tonight, Emily commented, "Uuugggh, my tube is doing it again!" I asked her what it was doing and she said it was feeling "pumpy." She said, no, it didn't really hurt, and it wasn't like a tummy...

This is posted in the Adults section, too. <a target=_blank class=ftalternatingbarlinklarge href="http://notsobrightandshiny.blogspot.com/">http://notsobrightandshiny.blogspot.com/</a> This blog belongs to Sarah, Conner's mom. Conner has been posted about on here a few times recently. We have...

<a target=_blank class=ftalternatingbarlinklarge href="http://notsobrightandshiny.blogspot.com/ ">http://notsobrightandshiny.blogspot.com/ </a> This blog belongs to Sarah, Conner's mom. Conner has been posted about on here a few times recently. We have asked for prayers for this family as...

I posted (I thought) a question about getting a bronch/endo on the day before flying...did anyone see it? I can't find it. Am I losing my mind already? I won't be 40 for another 13 months!!! Help!

We're leaving for Florida on Dec. 17, and today I get word from ENT/pulmo that they'd like to join forces to do an endo/bronch for Emily on the 16th. I iinformed them of our trip, and asked them to all touch base to make sure they are comfortable with this, but I'm honestly not sure I"M...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.caringbridge.org/visit/nickicyrak ">http://www.caringbridge.org/visit/nickicyrak </a> Nicki hasn't been a very frequent poster, here, but, she has chimed in on a topic now and then. I hopw she doesn't mind sharing her Caring...

Up to this point Emily has always done a half ampule of Hypertonic Saline (2mL) in the morning and half at night. She has also been doing a full ampule of Pulmozyme once a day. This seems to have been working. SHe's had sinus issues, but no real lung issues. She has never coughed stuff up, or...

I'm posting this in Off Topic because it's not strictly CF related. But, We all know that our Cf kiddos are a stubborn lot, so I'm hoping that someone will have a suggestion or idea, or at least can empathize. I'm going crazy! For about the last week, Emily has been having "accidents." Only...

I am on the Great Strides committee for one of the walks we participate in. It is this weekend, May 2. In the past, the walk has been very impersonal. YOu register, you sit around until the walk starts, you walk with your team, you eat and leave. No interaction, no "feel good" stuff...

So, I know many of us are deep into fundraisers this time of year. Liza's post about her successful rummage sale fundraiser made me wonder what everyone else is doing. I thought I'd let you guys know about our event that is coming up on Saturday, and see if anyone else wanted to brag a little...

This was also posted in Families.... I know that there are at least a few Wisconsin-ites on here, and one in Fond du Lac...so I thought I'd share. On Tuesday, April 28th Oscar's Food and Spirits will be donating 10% of the evening's sales to the CFF! Join us from 4pm - 9pm for dinner and help...

I know that there are at least a few Wisconsin-ites on here, and one in Fond du Lac...so I thought I'd share. On Tuesday, April 28th Oscar's Food and Spirits will be donating 10% of the evening's sales to the CFF! Join us from 4pm - 9pm for dinner and help out your favorite cause! Oscar's...

We recently switched to Viokase for Emily's overnight tube feedings after Ku-zyme was discontinued. With Ku-zyme, we put the enzyme in at the start of the feeding and it was good to go. Now that we've switched to Viokase we are still putting the powder (1/8 teaspoon for each can of...

Viokase just arrived via UPS. It is replacing the Ku-zyme we had been using for tube feedings. There is NO package insert and the bottle doesn't say anything about how to store it - refrigerator or not. It arrived in a cooler with ice packs, but that might just be because it's August...

Anyone who reads Nate's blog regularly will know this already, but for those who don't... Here is a link to a website of a jewelry designer. The pieces she creates are unique and beautiful. <a target=_blank class=ftalternatingbarlinklarge href="http://lisaleonardonline.com/...