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Congrats!!! I am so happy for you!!! If you for sure can't get your money back like suggested have you thought of trying an air purifier to help combat the mold? They really are terrific!! God luck :)

I totally agree with Aboveallislove!!! Find out that mutation. It could be the answer to your prayers. It could be the thing that turns everything around for him! Kalydeco is nothing short of AMAZING!!! I kind of hesitate to say this out loud (don't want to jinx us)but my daughter is on...

She finally got them to schedule a sweat test.....yeah!!

I am dying to chime in here!! They wanted to remove part of Abby's lungs too, I think it was the right upper due to a lymph node was closing it off and causing it to pretty much "fester" as the infection could only seep out. We decided to wait to see if she would out grow the lymph node and so...

Wow bless your heart Anthea!!! Thank you for sharing with me!!!:D

Thank you nmw!!! How did you end up getting diagnosed if you don't mind my asking. :)

Thanks!! My friend has a 20 month that has had 3 sinus surgeries all ready and currently has a PICC line from more sinus drama. His diapers she said will stink you out of the house and are loose and look like they have mucus in them. She said he drinks like a gallon of tea a day and eats...

I am asking for a friend...has anyone had a negative newborn screening but then had a CF diagnosis? Thanks!!

http://www.kens5.com/news/Angelina-187188281.html Let's show this beautiful girl that we care! Who better to left her up than us? At just 10 years old you know how much just a little encouragement can lift your spirits and give you the strength to push through. Thank you!!

I'm sorry have to echo Aboveallislove...have you and your team considered Kalydeco?

Fly...have yall ever tried Hyper-sal? It increases lung function and my daughter does so well on it! Since being on Hyper-sal I would say that was at least a 5% or maybe even 10% increase. Maybe you could ask your doctor if this would be right for your kiddo.

That's what Abby's dr's always told me, is that the goal is to always get her back to her base line...no matter what that number is. Good luck, I pray that they can find out what is causing the decline.

All sound like good suggestions to me...I do want to add no humidifiers. And we also got rid of the carpet in the bathroom (which I was gonna do anyway regardless but definitely a moisture holder). It sounds like to me you are just trying to get the facts and that is smart! You can figure out...

There just are no words :( prayers for his dear family. Breathe easy sweet little one

So glad to hear that your CF team is taking care of things!! That always feels so good!! And glad to hear that she is turning the corner!! Sorry to hear that your whole household is practically sick :( Hope things keep getting better and better!!! I think the hepa filter will make you feel...

If we forget Abby's enzymes we feed her things that we call "free food", like fruit, and salads until we can get home to her enzymes.

I've never heard of a CF supplemental insurance policy but would love to learn more about it. I'll try googling it. :)

Hi! I live in Texas too! We got supplemental insurance last year and it is my Hail Mary! Abby is in the hospital at least twice a year and has had 15 surgeries and she has never been in ICU but she's also not that sick as far as her CF goes, so others hopefully can chime in and help you with...

We were told not to use a humidifier due to it has the right conditions to grow psuedomonus and spread it in the air and whatever the vapors land on. You might double check to make sure I was told correctly.

Yikes, sounds like you are not having a good experience with your dr. I would see about switching dr's if they are not helping you with all of this being new to you. So when she was diagnosed did they send you to a CF specialty clinic? If so they should sit down with you for a very lengthy...