Recent content by threebabies

I would make her leave ASAP!!!!

Hi my daughter is 11 years old and she had been having a really hard time over the past several months. She was hospitalized 2 times in 2 months. She is staying home from school throughout cold and flu season in order to to keep her as healthy as possible. She has friends that she speaks to...

Hi my twin boys (both cfers) are supposed to be going on a class trip to Howe Cavern in Upstate New York. The caves are about 100 feet underground. I called today inquiring about the air quality, mold etc... I was told that it is damp and humid but that the openings in the caves allows the...

Hi all I made a short video of my kids. I am sure all you can relate. We are participating in freezing for cystic fibrosis on April 11. Check out the video https://m.youtube.com/watch?v=lKmZiFEVIsk

Sasha my kids are in the same boat as well. They have one copy df508 and a nonsense mutation which no one else has py849x. We are hopeful.

Get a boon spoon. It is a squeezable/squirt spoon. You can put any purée food in it. It was great for giving enzymes. Especially while traveling.

I wonder how the new card work as well. We are going to disney in November. The last time we went to Disney, the cf clinic wrote us letters. One was for the park pass and one for the airlines. The letters explained about cf and why it was important to have a pass.

I definitely heard about it. I am so worried for my 3 cfers . Has anyone contacted their cf centers ?

Just wondering if people with one copy df508 would benefit as well

Hi I feel for you. I have twin boys who have cf they are now 4 1/2 and a 6 year old daughter with cf. I am going to be honest it is a tough road. My boys had a lot of issues when they were first diagnosed. However, with all the challenges our family faces it becomes the "norm." My children are...

No asthma, but the twins are getting admitted for a tune up on Wednesday

I was wondering if exposure to extreme cold temperatures is bad for cf'ers. We are have a bit of a cold blast here in New York. My kids want to go out and play. Dh says it isn't a good idea. Any opinions?

I am also interested to see how everyone did with trial. Please let us know. Gina Mom to Sophia 4 w/cf, Peter & Gavin 3 w/cf (DF508 & PY849X)

We are in the same boat my daughter is 4 is starting full day kindergarten in September. I am going to meet with school nurse in a few weeks. My husband and I are nervous. My husband wants me to home school because he is afraid of her catching little bugs throughout the year. I want her to go to...

We are in the same boat my daughter is 4 is starting full day kindergarten in September. I am going to meet with school nurse in a few weeks. My husband and I are nervous. My husband wants me to home school because he is afraid of her catching little bugs throughout the year. I want her to go to...