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I know I kind of disappeared for a few months and I want to update everyone on how things have been going here. I have missed everyone and hope to be back here again. Emily got very sick the week of that awful end of October snowstorm. We weren't able to take care of her as we should and I know...

This new reply window has all kinds of interesting features, and I can't access a bunch of them using firefox! I get a pop-up telling me cut/copy/paste is not available for Mozilla/FF, and the link button is grayed out. Just trying to figure it out, so ignore me, unless you too are trying to...

This is SO overwhelming. Emily is home on IV's for the first time and trying to manage her care, plus 2 other children, plus anything else (hah! everything else is a disaster) just feels impossible. She's on 2 meds that take almost 2hrs to run (total); the first of the day starts at 6 and...

After a never-ending exacerbation that a month of oral abx (Bactrim and Levaquin) just didn't do anything to help her get over, they had us bring her in on Monday. Her pft's were down a lot... fev1 down 18% vs. before she got sick, etc. She was admitted for IV's and put on tobra and...

Has anyone ever had an adverse reaction to Symbicort after doing very well with nebbed Pulmicort? Emily has had a very sharp increase in cough the last couple days and it coincides with changing to Symbicort. Her cough last night was so severe she was nearly vomiting, gasping for air, etc. It...

Oh my goodness, Emily is eating like there is no tomorrow. <img src="i/expressions/face-icon-small-happy.gif" border="0"> The other day, she had for breakfast 3 sliced tomatoes from the garden and a glass of milk, then a bowl of cereal. Then for lunch- 3 slices of leftover pizza. Then for...

Emily had a breathing tx the other night using a neb and mask that she's never had before. She liked the mask, I think because she did not have to hold it. It looked kind of like the bubbles mask but attached to the neb on the bottom and the duoneb was done in 5min. Anyway, my question is...

This is driving me nuts. Fortunately, we don't take much flak from the school... Emily has an IEP with a good health plan and her absences are excused for health reasons and she doesn't get inundated with more makeup work than she can manage either. However, the amount of school she has to...

I have a question that I am hoping others here can help me with... My daughter usually uses a Ventolin inhaler for her albuteral; 2 puffs twice a day. When she is sick she increases to up to 4 puffs every time she does her vest- so up to 16 puffs/day when ill. She is coughing so hard that I...

The CFF site has updated it's <a target=_blank class=ftalternatingbarlinklarge href="http://www.cff.org/LivingWithCF/CareCenterNetwork/">Care Center Network</a> data to now include 2008 statistics. I know I find this data valuable & I'm sure many of you do too in researching clinics and knowing...

I've posted so many times about my daughter's weight gain issues (well, more like lack thereof) and now, of late she has had incessant stomachaches that have really been taking away a lot of her QOL and left us constantly wondering what is going on and have us worrying about the Poop Situation...

A frequent issue here is dealing with Emily's health issues frequently resulting in broken plans (or at the least, having to often readjust plans or not being able to commit in advance to certain things.) This understandably results in resentment on their part when they have to miss something...

My 3rd grader had been doing very well in cooperating w/ doing her treatments (a big program at her center aimed in this direction where the kids are rewarded for taking progressive steps towards independence), was initiating doing them on her own, etc- VERY very good stuff! Until one night out...

Emily has been eating very little since Monday, most days probably the combined total of about one meal for the entire day. She usually eats like a horse so this is VERY unusual for her. Monday I wasn't worried because she was at grandma's all weekend and I figured she probably didn't get...

If you or your child needed a G-tube, what was a bigger factor: BMI or the growth chart? Emily is really tiny for her age; growth failure is what led to her dx. She was just over the 5% on the growth charts for her height and weight at the time of dx. Anyway, here is the story: once she...

Something that really made me proud of my son today... Shawn- who is in 7th grade, is doing a semester in science right now focusing on cellular biology. Being the nature/science boy that he is, he loves this and comes home every day determined to show me up for any possible lack of knowledge...

Emily is 8 so I have limited involvement in her potty functions nowadays, other than keeping tabs on what her poop looks like in the toilet on a regular basis. But last weekend we were in a public bathroom where I had to help keep her from dropping her fancy dress into the toilet (hahaha... you...

Emily got sick rather suddenly the last few days. She was fine on Saturday, went to dance, full of energy. Sunday morning woke up and made a run for the sink and coughed up blood-streaked mucus and a some pink/brown tinted liquid and for the rest of the day had a lot of productive coughing...

<a target=_blank class=ftalternatingbarlinklarge href="http://www.wtnh.com/dpp/news/health_ap_cysticfibrosis_newborntests_200904301545">Cystic fibrosis added to newborn tests: local ABC affiliate</a> The bill was unanimously approved and is just awaiting signature by our Governor. <img...

Emily has been sick for about 10 days now. It started with the same run of the mill virus that her brothers had; they were better within a couple days but she just kept getting worse despite the extra vest & albuteral treatments. Her dr. put her on Bactrim at about day 5, which has worked well...