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Sandboxes, Scissors, and Snot: A Beginner’s Guide to Preschool with CF

This week, my daughter started 4-year-old preschool, or as we say here in Indiana, “pre-K.” On the first day of school, she literally flew out of her classroom and declared that she had just had the “best day ever." And you know what? So did I. 

Not because I had spent the morning nursing a mug of coffee or pondering the meaning of life. 

"Free Spirit With A Wild Heart"

I had known Vicki for a few years before finally meeting her face to face in 2014 at Champ's Challenge, one of our fundraising events in Vermont. I was struck immediately by two things, one, how could she fit all that light and energy into such a small frame, and two, how could I be more like her? We met one other time in Boston for a CFLF board retreat and again I found myself in awe of her. I’m pretty sure I remember her showing up to the restaurant where the retreat was being held via skateboard. (Am I remembering that correctly, Bridget?) Okay, maybe it was a long board… 

Reclaiming My CF

For the first time in my life, I’m alright with Cystic Fibrosis defining me. You’re probably thinking, what?! Luisa, are you claiming a defeat, are you succumbing to this disease? No, I’m pulling a Maxine Waters and reclaiming my Cystic Fibrosis, all of it. The good, the bad, the scary, and the uncertainty. All of it is part of my experience as Luisa-- just like I am hispanic and I am a woman, I am also Cystic Fibrosis.

For most of my young adult life, I adopted an approach that despite CF, I was still living my life to the fullest. 

BreatheCON is Back!

We're excited to share that our friends at the Cystic Fibrosis Foundation will be hosting another year of BreathCON. If you missed it last year you can read about it below from Aimee Lecointre (our nutrition blogger) and find out how to sign up to particpate:

It’s back! BreatheCON is back for its second year and it’s going to be another good one!

Back to School

Healthy Body Healthy Mind

It may seem like the last school year just ended, but it is already that time for the next school year to begin! Being educated and prepared for you (or your little one) can significantly reduce the anxiety of not only getting back to school, but also the next step in teaching independance and empowerment with CF. One key logistic pertains to taking enzymes or albuterol in school. Most states and districts have a medication administration form that needs to be completed. Please contact your CF center and get the forms completed before the first day of school.

The Art of Working Hard

This summer has not felt like much of a summer. There have been a few hot days but they’re usually followed by a week of rain and 60 degree weather. Most nights I still have to pull up the extra blanket that I leave folded at the end of the bed just to stay warm. Last year it was hot and sunny for such long stretches it became uncomfortable. 

Salads For Summer

It’s summer and boy is it a hot one! When it’s hot out one of the last things I want to do is heat the house up to cook a meal. Plus, I just don’t feel like eating a hot meal when it’s hot out. Ya feel me?

Salads give me life in the summer!

I often find that salads get a bad wrap in our community, the CF community. 

Cruisin' Together

I recently invested in something so utterly cool that I’m still in shock that it’s mine. A new car, you ask? Nope. Maybe something uber-techy? Try again. Stumped?  Well, I’ll tell you. I bought myself a brand-spankin’-new Huffy cruiser bike. And it is indeed awesome.

My two kids, one of whom is four and has cystic fibrosis, have been badgering me to get a bike all summer. And on a recent trip to the sporting goods mecca Dick’s, this peach and turquoise beauty caught my eye and held it until I signed on the dotted line. 

Summer Solstice in Alaska

It has been a healthy year for me and I was fortunate to head north to Alaska for Summer Solstice. The trip was a reunion with my college roommates and spouses. Yes, we are all still hanging in here and met up in Anchorage then headed to Homer on the Kenai Peninsula where the solstice brought over 18 hours of daylight.

Advice for parents of young kids with CF- From someone who has CF

Every now and then I get emails or phone calls from parents (usually who’s kids have gotten Recreation Grants from us) who have questions about various things having to do with Cystic Fibrosis (CF). Because I have CF and I’m an adult they must feel I have some insight into the situation. I'm definitely not an expert, but I decided to compile a list of some non-medical advice for parents of kids who have CF.

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