Search results

We have one for my two teens with CF. They share the base but each have their own mouthpieces. They love it. They use this WITH the vest (they use Smartvest) and when they travel (my daughter just returned from Hawaii for a week for spring break with another family), its SO easy. She soaked it...

Are you in the Richmond VA area? Saturday, March 28 at 4 pm, Children's Hospital of Richmond is hosting a great CF Family Education event with Michael Boyle speaking (he did the NACFC keynote last fall, fabulous) and me AND my teenage son talking about parenting kids with CF. I hope to see you...

Are you in the Richmond VA area? Saturday, March 28 at 4 pm, Children's Hospital of Richmond is hosting a great CF Family Education event with Michael Boyle speaking (he did the NACFC keynote last fall, fabulous) and me AND my teenage son talking about parenting kids with CF. I hope to see you...

Hi! Like many others, I am not against simple supplements- both of my teenagers with CF take vitamin D, calcium, magnesium, probiotics, and garlic. They also eat healthy foods, not just the "high fat, high cal" CF diet (they eat healthy fats and get calories in healthy ways, not just by eating...

REGISTER NOW FOR NEW TELECLASS: Winning with CF: Tools, Tips, and Tacticsfor Raising Healthier Kids™ Dear Parents and Guardians ofKids with CF, Wouldn't it be nice to knowabout the parenting potholes in the road of life with cystic fibrosis so youcan avoid them? A new parentingteleclass (by...

REGISTER NOW FOR NEW TELECLASS: Winning with CF: Tools, Tips, and Tactics for Raising Healthier Kids™ Dear Parents and Guardians of Kids with CF, Wouldn't it be nice to know about the parenting potholes in the road of life with cystic fibrosis so you can avoid them? A new parenting teleclass...

REGISTER NOW FOR NEW TELECLASS: Winning with CF: Tools, Tips, and Tactics for Raising Healthier Kids™ Dear Parents and Guardians ofKids with CF, Wouldn't it be nice to knowabout the parenting potholes in the road of life with cystic fibrosis so youcan avoid them? A new parentingteleclass (by...

How did you get a new version of the SV? My daughter has one and she would love a new one. Thanks!

Hi All! I am starting to spread the word about my upcoming parenting teleclass (by phone on Sunday evenings) for CFparents. Registration is open and the start date is Feb 23. Some of you herehave attended so you know how much it helps with ourkiddos! Here's a link with info...

Hi All! I am starting to spread the wordabout my upcoming parenting teleclass (by phone on Sunday evenings) for CF parents. Some of you here have attended so you know how much it helps with our kiddos! Here's a link with info: www.WinningWithCF.com. I'll post moreinfo below. REGISTER NOW FOR...

Ashland, so sorry you are facing this. You are doing the right things as far as getting therapy. And Allansarmy, what a great reply. It sounds like you went through a lot. There are no easy answers to this issue obviously. I can say that (as a professional parenting educator and coach) that...

I would definitely have the child life specialist explain this. They have dolls and samples of the medical equipment to show your child what will happen plus the skills and language to explain at their level. Here are some things to remember about this age. Good luck and feel free to PM with...

Thanks All for taking the time to do the survey! "Above All", I'd love to chat. :-) I am very open to feedback. I'll post my results here, the highlights anyways since the actual paper(s) will be long. Already, it's interesting... More to come.

It is hard finding out about things like this but the "silver lining" is that you will be carefully watched and taken care of. My son (with CF) had the same thing when I was pregnant 14 years ago now. He was born via C-section. Today, he is a healthy, well-adjusted, spunky teenager who is good...

Please help with research for creating a "Newly Diagnosed" class. Thanks. :-) Hi All, I am the mom of two with CF (ages 14 and 12). I have been pretty active here in the past but have been terribly busy lately with kids, college, and work. I am working on my master's degree in family...

Please help with research for creating a "Newly Diagnosed" class. Thanks. :-) Hi All, I am the mom of two with CF (ages 14 and 12). I have been pretty active here in the past but have been terribly busy lately with kids, college, and work. I am working on my master's degree in family...

Working on a paper about CF and transition for my Master's degree, I stumbled on this quote (from Hewer and Tyrell) that I thought interesting about infants born recently with CF having a mean survival of greater than 50 years. That sounds so much better than "median survival of 37". And that...

Dear Bloggymom, I am so sorry you are having to go through all of this. It's a double edged sword, being strong and independent. Then everyone leans on YOU. It's human nature. You are clearly a supportive person who cares so well for everyone else that they take you for granted. That's human...

Welcome and so glad you found this group. There's alot to learn... Ignore the scary stuff you might read out there, there is so much hope for our kiddos and especially for babies. There are some very promising treatments coming that will continue to make a big difference. Our children are now 14...

Hi All! I am starting to spread the word about my upcoming teleclass (by phone) for CF parents starting on February 3. Some of you here have attended (and can audit for free) so you know how much it helps with our kiddos! There are a limited number of scholarships available so register early for...