Jingled all the way to the tune of $1520!

Our Run for Reason Season with the Rosebuds was a wonderful hit!  We are so excited to announce that Elena's team of CF Superheroes raised $1520 in gift cards!  Way to go team!

We are so happy to be surrounded by so many supportive and caring people.  We met many lovely families today that are affected by Cystic Fibrosis. Many just learned about us today!

Our team photo will be up later.  Here are some other fun photos to share now!

What a great day:)

 Elena, Nana, and Dr. McKean (Elena's excellent CF dr, and when we say excellent, we MEAN it) running the Rosebuds table.

 Family gathers around as we wait for the start of the race.

 Elena's ever supportive buddy, Cassidy!

 Even Santa and Mrs. Claus supported the cause!

 Go Everett and cousin Audrey!

 Elena helped Emily run the Elf run:)

 Logan says he's number one and we must agree!

Elena helped her friend Cassidy finish up her 1 mile.

Another wonderful Rosebud event.  We are so proud of Elena and all of her accomplishments, especially her tireless efforts to help find a cure for her friends and herself living with Cystic Fibrosis.

Oh man...here it comes...

Yup, here it comes...that time of year when everyone gets.....sick!  This year we are hoping for a low key, germ free holiday.  It's possible, right?

So far we have had some runny noses that were easily mended.  Thank you Jesus (both hands in the air and using our TV Church voice...you know the one).

Elena has been different with sickness.  She seems to handle sickness so much better with each year. As she gets older she knows not to stick her fingers in her eyeballs after she grabs the shopping cart at the grocery store (her siblings are slowly...very slowly mastering this one).  She knows to wash her hands often (I think our household has this one DOWN!!). She recognizes when someone doesn't look well and she keeps a safe distance or politely removes herself from the area (something many adults don't ever master).  She KNOWS how to protect herself when other people are unaware of what their "little sniffle" could do to her.

Our family and friends GET IT!  We had grandparents steer clear of a popular family time gathering because they were worried about what their "little sniffle" might do to the kids, but specifically Elena. This is not the first time we have missed time with friends or family because we have had to make a tough call to avoid the chance that Elena might get some germ that hospitalizes her. It seems so extreme to many, but a daily and very real concern for us.  We are so thankful for each time someone gives us the run down on their family's health before we arrange to get together.

So, in the spirit of thankfulness...THANK YOU to our friends and family that work as hard as us at trying to keep Elena as healthy as she can be!  In turn, we are all keeping each other healthier...it's a win-win:)

Test Results

The test results for Elena's recent culture came back negative!

Her lung function is down, but all else is well.  That is a victory in our book and we will take it!

Meanwhile, she is continuing to do her twice a day breathing treatments (30-45 minutes per session) plus taking her wide assortment of pills.  Thank goodness for maintenance medicines that keep her growing and strong.  Praise God for a wise doctor (with amazing staff) that looks at his patients as people whom he really cares about.

First.

Elena has been struggling with keeping her lung function up. We got rid of whatever germ was hassling her ear a couple weeks ago.  We thought the function would go up, but it didn't. Dr. McKean is running some more tests.  Meanwhile, she is doing great!  You would not know that the function is down.  Just another little bump in the road.  We also wonder if the testing was just off because she is not having any other problems and her lungs sound clear.  We will know more next week.

Why is this titled "first"?  Elena had her FIRST real audition on Friday for a student film.  She was trying for the lead.  She had so much fun and stated afterwards that she loved the crew.  Regardless of the outcome, she learned some new things. So exciting!

Rosebuds photo shoot

Thank you to the founder of the Reaching Out Foundation, Susan Burroughs, for taking the time to do a photo shoot with our little Rosebuds this morning. This is just a little taste of the fun stuff she caught on film this morning.

A Fun Twist on a Not So Fun Disease

Our Friend and CF Cybro, Andy Lipman, has been a great voice of CF for many years.  He now has produced a music video to send a message about life with Cystic Fibrosis.

"I Need a Nebulizer" features photos of people with CF, but especially two of our favorite CFers, David and Elena!

Enjoy!!

Here is the video “I Need a Nebulizer.” It’s a parody of Billy Joel’s “We Didn’t Start the Fire.”

http://www.youtube.com/watch?v=VyrqrjcPDq4

Rosebuds Superhero!

Elena was a CF superhero today as she recruited runners and team members for her upcoming Rosebuds jingle jog race on December 7th. She braved the rain at the big peach sizzler. She was adorable in her cape and mask!

She was visited by many friends including her awesome CF doc!

I'm a proud MaMa.

Want to join us on our mission?

Check out our super flyer:

Enter team "rosebuds" and use discount code "ROSES"! 

www.jinglejog.com

Registration will be open soon!

See you there superhero!