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My daughter has had a rash on her genital area on and off for awhile. At one point it was strep but the last couple of cultures have been clean. It looks like it is being caused by urine, doesn't look like yeast. At clinic last week I mentioned it to her Dr and she thought 1 cause may be...

We're going to Mexico in June and the houses I'm looking at are solar powered and may not support the plug in nebulizer. Has anyone used the pari trek with pulmozyme and hts? Also, this would mean taking a vacation from the vest and having Lili do the accapela for the week we are there and...

I just got an evite to a memorial service for Allison Thrasher who worked for the Seattle chapter of the CFF. Does anyone know what happened? She was very nice and very dedicated to fundraising for CF.

I've spent hours on the phone with Medco in the past couple of weeks. I was told I now need to order Enzymes from them. So I had Lili's clinic call over the prescription. A couple of weeks later I got a prerecorded message saying that they did not have Ultrase and I would need to have the Dr...

Anyone from the Seattle area planning on doing the walk tomorrow? I'll be there early to help set up. Our team - Team Lili will have bright blue shirts with a lung tree on them so please say hi if you see us. I'm so happy the weather is going to be nice this year!!

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nytimes.com/2008/03/16/fashion/16love.html?ref=fashion">http://www.nytimes.com/2008/03...6love.html?ref=fashion</a>

I got a notice in the mail yesterday about the onetime payment that will go out in May. Extra money is always a good thing and I realize some people really need this help from the government right now. We are doing ok and feel we don't need this help. This morning we decided to donate...

My friend Lisa Greene and her co author Foster Cline MD have their first blogtalk scheduled for tonight from 6-6:30 PST. They will be talking and answering questions about childhood rebellion and how to avoid it. To sign up go to: www.parentingchildrenwithhealthissues.com I'm really looking...

Hi, A couple of weeks ago I read the fine print on the bottle of enzymes and it says they should be stored at a temp between 59-77. Does anyone know if they are less effective if not stored at the correct temp? We order meds from cf services and the enzymes come with the pulmozyme which is...

It looks like my husband is going to get a full time job at Microsoft. He's been contracting for 2 years and we have our own insurance which is getting too expensive. Microsoft's health insurance plans cover 100% with no monthly premiums. A lot of people stay at Microsoft just because of the...

thought some of you may like this: <a target=_blank class=ftalternatingbarlinklarge href="http://www.nytimes.com/2007/10/10/dining/10pick.html?em&ex=1192248000&en=d02dc2adbc4712a2&ei=5087%0A">http://www.nytimes.com/2007/10...2adbc4712a2&ei=5087%0A</a>

I just saw tis morning that there is a great strides walk coming up on the 29th in Snoqualamie. Any of you Seattle folks interested? I probably won't go if it is raining - one gs walk in the rain this year was enough but if it's not I want to do it!

I'm so excited about Lili's vest coming today. Our clinic seems to wait a lot longer to prescribe them and I went to clinic last month ready to argue my case only to be met with - ok she's now big enough what kind do you want? So my question is can I do it at the same time as the pulmozyme she...

Lili has been having a lot of accidents lately. Yesterday I put them in the car to go to swimming and thought it smelled a little poopy, I asked and she told me she didn't have an accident. Well we get to the pool and Mia's class was first, I checked Lili's bathing suit and sure enough a...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.nytimes.com/2007/07/27/us/27infect.html?_r=1&oref=slogin ">http://www.nytimes.com/2007/07...html?_r=1&oref=slogin </a> I thought some of yo may be interested in this article

I ordered the Stanford videos and was so excited about the trial with NAC that I would like to add it to Lili's supplements. Problem is they only tested on older kids, and I can't seem to find any info on recommended dosage by weight. She weighs about 42 lbs. I brought up NAC with her Dr at...

I ordered the Stanford videos and was so excited about the trial with NAC that I would like to add it to Lili's supplements. Problem is they only tested on older kids, and I can't seem to find any info on recommended dosage by weight. She weighs about 42 lbs. I brought up NAC with her Dr at...

I started my daughter Lili on an anti inflammatory diet the second week of May. A little history first... Before diagnosis with CF last year we found out she may have a wheat allergy so tried a glutten free diet and much of her malabsorption issues went away. After a month of that her...

I noticed this on the cff.org site today. There is a link to the voting area on the news area on the front page of the site

I noticed this on the cff.org site today. There is a link to the voting area on the news area on the front page of the site