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Hi Jen,yellow or green mucus means infection. Call the primary care doc and ask about an ENT doc if this has been going on for a while. I could be a nasty sinus infection. Lots of kids with CF have sinus problems and polyps. It would be worth checking into.Andrea

Jen,The first time we were rejected they said that my husband made too much and that my daughter wasn't sick enough. How is having CF "not sick enough"? Apply anyway and let them deny you, then you can continue to fight it. They can not stop you from putting in an application. Appeal, appeal...

I forgot to give you our site. http://groups.msn.com/teamRachelJane I have some basic CF stuff up there. Also some basic genetics. It is basicly our site for info on our daughter and CF and our CFF GreatStrides team. Check it out if you feel like it.Andrea

Hi,My daughter gets a little bit of $ each month (this helps with her dietary suppliments and the huge amount of milk and cream we go through for her) and because she is gets SSI, she automaticly gets medical assistance (this varies state to state).Andrea

Hi,when my daughter was an infant I used one of those breastfeeding "boppy" pillows for PT. We just laid her over it It was great for a while. Ask at CF clinic if you could speak to a therapist about CPT. They will have great tips for babies........The respiratory and physical therapists...

JenYou have to fight to get the SSI benefits. The rejection notice should give you info about appealing- do it! they will send you paperwork to fill out Keep fighting. I finally had to request that a judge review the case and the letter i recieved from them said that he wanted to know on...

I suppose that it depends on where you are having the test done. MAKE SURE THAT IT IS AT A CF CENTER NOT JUST THE LOCAL HOSPITAL. The CF centers have much better rate of correct results. You wouldn't want a false positive or false negative. The CF center where we had our daughter tested had...

Hi Congrats on the new baby!!!my daughter was 9 &1/2 months when she was diagnosed. She was already on neb treatments because she was having a lot of respiratory trouble, she was immediately put on enzymes because it was apparant that she was pancreatic insufficient and vitamin K as well as...

Go to http://groups.yahoo.com/group/cfparents Post your question there and I am sure you will get propmt responses. I don't know anything about 504 plans but they talk about them a lot on this site, some real "experts" there!Andrea

From the sound of it, your nephew doesn't exhibit the "classic" CF symptoms, but not everyone does. If your nephew tests positive for CF and if the cousins are around eachother a lot already, they probably already have the same bugs. If he tests positive, make sure he isn't culturing something...

Thanks for the reply. Now that you said it I do remember reading this somewhere along the line.......Andrea

Oops!I wanted to ask if anyone knows how long tobi can be left out of the refrigerator before it has to be thrown out? I stupidly left out a dose of it and hate to throw it out unless it is bad. I left it out for just about 10 hours. Should I just throw it out?Andrea

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Hi,Where did you walk? Our team- Team Rachel Jane- walked at Ridley Creek State Park in PA. yesterday. The weather was nasty but the turn out was better than I have ever seen it there! I forgot to ask for our final amount for the day but I also know of a few checks that are on their way in...

We did get this vest approved finally and Rachel likes it! The insurance lost stuff and waited until the last min. but they did finally approve it. The company had a rep come to our house and show us how to use it. As it turns out he also works at the hospital where Rahcel is seen (CHOP) So...

http://groups.yahoo.com/groups/cfparents Is the addy. for the group. They are very nice and welcoming. Also http://groups.msn.com/cysticfibrosis2chat is another good place (I don't think anyone there is older than you there but they are nice.)Andrea

HI,If it is the drugstore and grocery store that bothers you can you try not to take her with you then? I know sometimes this is next to impossible and you have to take them with you but you are still in contol of her in the market and at the drugstore too. Keep an eye (or an ear) out for...

Hi,Right now when you take the baby with you , you have a lot of control over who touches or holds her/him. Just be aware of who you let handle the baby. After my daughter was diagnosed at 9 and 1/2 months, I was very worried too, but I realized that she can't live in a bubble and as she gets...

Obviously, I do not believe that death is reserved for those who choose it. The people who do not comply do throw off the "average lifespan" thing though, for those who do comply. I am well aware that CFers die even though they comply with every aspect of their treatment. As I said in my...

Well, we obviously disagree here. The average lifespan cannot take into consideration all the advances that have been made in the last few years or the ones that will be made in the future. It is, therefore misleading. It is an average by definition. It can only use specific data and it...