Raining...I mean Running..we HOPE!

The Rosebuds CF Superheroes will be raining...I mean running this weekend! (Please don't rain). 

 11 years ago at this time we held our little gray baby that we thought was slowly slipping away from us because of Cystic Fibrosis. She had already undergone 3 surgeries and was having severe complications. Her kidneys were shutting down, a lung collapsed, her breathing was labored, her intestines were still blocked, and we were numb because if we were not, we would have been unable to stop tears.

Here we are 11 years later and her lung function is up higher than it has been in over 2 years!!!!! Donated dollars get us closer to cure for CF. Please consider donating towards our family goal; helping us be a kryptonite to CF! We are $415 away from our $1000 goal! Thank you friends and family for being there in your words, hugs, thoughts, and donations. I'm continuously humbled by the support that comes in ALL sorts of ways.

You can donate here: https://www.makeyeshappen.com/Athlete/Profile/7433

One week!

One week until Rosebuds race day!  We are getting closer to changing lives of those with Cystic Fibrosis and their families "one mile at a time". 

Elena enjoyed being totally in charge of her Rosebuds table. She sold 9 pairs of her homemade earrings of which profits go towards her CF fundraising efforts at a local race yesterday.

Elena is so brave, strong, inspiring, and energizing!

I am a proud parent as I see how Elena lives her life selflessly. She is being an excellent example for her 3 younger siblings of how to give of themselves to help others using their talents. As if Elena does not do enough for others, she is now taking on a new project to help others. She is working on her plan so I will wait until she finishes it to share with all of you. Let's just say, she is a Superhero for many reasons.

My greatest reward as a mom is seeing my kids show so much love and understanding to others. They are doing good in this world and changing lives not because they feel they have to or because Mom made them, but because they WANT to. 

We will be a part of finding a cure for CF so this big girl can continue to be the awesome big sister that she is.

Join our cause:

www.milesforcf.org

Our next race is April 25th in Lawrenceville at the Gwinnett Braves Stadium for ages 14 and younger. Distance is 1.2 miles and the cost is only $5!

Join us in "beating CF one mile at a time."

A Sea of CF Superstars!

Tonight was a wonderful date night with my oldest boy, Ethan. It began with his selection of my dress, jewelry, jacket, shoes, and even an additional spray of hot pink color on a section of my hair! Then I had specific directions on how to stand and what my face should be doing for our pre-date picture. My little handsome date was wearing his new tux. The kid looked sharp in his tux and Mickey Mouse Converse kicks. Lesson I learned from this; I am no longer in charge of my clothing choices. Ever.

It was a special night. We went to celebrate all the volunteers that do so much to help the Atlanta chapter of the Cystic Fibrosis Foundation be the amazing success that it is.  We were in a room filled with a sea of CF super stars!  It was like walking amongst celebrities. I knew all their names as well as the wonderful things they have done to provide funds that are pushing superfantastic new drugs down the pipeline that will help our Elena and many others like her!  Now I had finally bumped shoulders and shaken the hands of these amazing folks plus hugged many long time friends in my fabulous CF family!

My parents were among the rewarded.  Since Elena's birth and diagnosis, my parents have gone above and beyond to make things happen in the CF community.  To listen to the presentation for each volunteer and see my parents among the greatest of the great was an honor. Did I cry? You betcha! Ask my dear friends and they will tell you I can't make it through a CF event without many a tear shed.

Ethan is the next generation of CF support for people like his big sister Elena.  He knows it, too. 

While on the car ride home, Ethan was planning his first invention. The conversation went like this:

"It is going to be a broom like Harry Potter that flies for real. However, I should be the one to test it. Em and EV are too small, You are too heavy (thanks for that kiddo), and Elena already has CF and I don't want her to also have to deal with a broken bone or something. But until I can do that, I think I'll do a parody to a Bruno Mars song in my new tux. I'll sing about Cystic Fibrosis for my sister. It will be funny because I look like Bruno Mars and I dance good."

Yes, Ethan, if will be funny. Yes, you dance very well. Yes, you will make a difference in this world because you want to help other people.

Wow, I've got my own little sea of CF Super Stars in my home, with my parents, and among my friends.

Want to join the sea with me?

You can donate here: https://makeyeshappen.com/Athlete/Profile/7433

Register your child 14yrs and younger to run a FREE race on April 25th here: http://milesforcf.org/rosebuds/

Register yourself for a 10k on Labor Day here: http://milesforcf.org/sizzler/

Join us in the sea of CF super stars. It feels good; really good.

Nugget of Wisdom

Found these nuggets of wisdom as notes on Elena's school desk:

My favorite was her own:

There is so much meaning to these simple words.

We are so proud of the young women Elena has become. She is mature beyond her years. 

This morning she spoke at Viasat’s breakfast for their Great Strides Kick Off campaign.

So big, so mature, so strong, so brave...

She is our own personal nugget of wisdom!

Shhh...you hear that? Nope, me neither.

To say we are excited about Elena's new vest is an understatement! 

Today, we got the call that Elena was approved for the new AFFLO Vest and they were delivering it TODAY. 

1. We were unsure about how effective this vest would be considering it is battery operated. 

2. There was much apprehension about a new vest when we already had one that seems to work great. 

3. PLUS, the cost is like buying a car.

We were won over once Michael from Carmichael's in Monroe arrived. 

1. This vest does not compare to the Hill-Rom vest.  AFFLO is a whole new category of it's own.  It has programed settings that vary the compression intensity and location.  Think like a massage chair.

2.  The vest we have is 6 years old and technology changes.  WOW did it change.  You can not even hear the AFFLO Vest.  Her old vest is so loud that no one can hear anything when Elena does her treatment.  All the kids were around listening to the new vest and Ethan said, "So you are doing it right now?  Whoaaaaaaa."  Keep in mind that all 3 of her siblings have sat in her lap and jiggled themselves to sleep as babies while she did her treatments.  They only know the loud familiar noise of the Hill-Rom vest.  Also the SIZE!  Old vest = giant dinosaur   New vest = sleek sports car

3.  Michael heard from the CF community (thanks Eyana:):)) about the many things Elena does for the CF community.  They also heard that Elena was saving up her own money to buy an AFFLO vest.  The AFFLO manufacturing company and Michael's company worked together to help with the cost.  I HAD to hug Michael after this news.  Those who know me, know I'm a hugger!

Elena is SO in love with her new vest.  She has already done 4 treatments today and she has only had the vest for 4 hours....she only has to do 2 treatments a day. :)  She said that when Michael showed her the remote and explained that she could walk around and do her treatments...she cried a little.  We ALL cried a little today!

Here are a couple of videos to show you how her vest works AND to see how very very quiet it is!

We thought that Michael would enjoy watching Elena's new CF fundraising video since it involves beating her old vest with a plastic bat.  We all had a good laugh as we watched the video again. 

In case you missed it in the last post, here you go:

This new vest is life changing for Elena.  She can now do her treatments on the go.  She is no longer tethered to the couch. Since she spends up to 1 and sometimes 2 hours doing treatments, this is extremely exciting! However, the most exciting thing is that she is receiving the latest in chest therapy.

Hill Rom makes an excellent vest and we are happy we had it, but WOW...we are sold on AFFLO.

Just Send Your Name

Our Cystic Fibrosis fundraising could not begin without an awesome video by our CF Superhero.  Join our team 65ROSES (walk, run, volunteer) for our March 22nd Marathon/Half Marathon or our team Rosebuds for the 5K that same morning. 

Sign up at:   www.milesforcf.org

Make donations for at:

https://www.makeyeshappen.com/Athlete/Profile/7433

 

Watch the best parody video of Blank Space EVER below:

 

Elena had the best time ever filming this.  She said that this is our best fundraising video ever!

CF Superheroes Super Success!

Thank you to ALL who support our family and our fundraisers in SO many ways!  The Rosebuds were all smiles yesterday despite the icky weather.  Thank you thank you THANK YOU for the donations that will be helping make Christmas a little less stressful for several of our local families struggling with complications from Cystic Fibrosis. 

 

May you find joy in helping others this holiday season. Random acts of kindness can go a LONG way.
Merry Christmas and Happy Holidays to ALL!!