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!!

New York NEW YORK!!!

Elena had the great joy of traveling to NEW YORK CITY with her Nana and PaPa.  (Thank you again and again and then a whole lot more for taking her on this amazing trip Mom and Dad.)
Elena was able to enjoy all the things that New York brings including trying her first latte and riding in a plane for the second time...but first that she can remember. 

 She rode in a carriage around the city with her favorite tour guide, my cousin Brandon.

 Who took her on her first subway ride...and...

 of course took her to Grand Central Station and showed her a fun trick of whispering to each other on opposite sides of the station.

 View from hotel room...wow!

 Outside the building of Jimmy Fallon! She ALMOST saw Jimmy, but he was out of town for the week.  She was bummed BUT she DID get on the set of...

 The Colbert Report! On the set and sitting at the desk of Stephen Colbert!

 Times Square

 Top of the Empire State Building.

 The Statue of Liberty.

 The Bull on Wall Street.

 The Twin Towers Memorial.

 Wicked on Broadway!

 The Museum of Natural History...me want gum gum.

Radio City Music Hall and a tour WITH a Rockette!

Amazing trip for an amazing young lady.

Rosebuds calling all potential Superhero Sponsors!

Dear Potential Sponsor and CF Superhero,

 

Our Rosebuds team is a group of kids helping kids with Cystic Fibrosis (CF).  Elena is a bright, talented, and motivated young lady who was born with CF.  Elena's mom runs and fundraises with Team 65ROSES on behalf of Miles for Cystic Fibrosis, a local nonprofit that raises awareness and money for CF research and to help CF families struggling with the high cost of caring for this disease.  In 2009, when Elena was only 5 years old she declared that she wanted to run on her own "kids team" to raise awareness and money; just like her Mommy!  To bring this vision to life, Elena ran in a kids fun run at her Mom's 65ROSES race beside her parents, siblings, friends and CF supporters.  Her theme and inspiration was "Kids helping kids with CF" and thus the Rosebuds were born!

 

Since 2009, this charity of young runners has worked to raise awareness and money to support local CF families and for CF research.   The Rosebuds have raised over $45,000 for CF charities!

 

The Rosebuds would LOVE to list you and your company's name as a corporate sponsor on our website, social media, and our shirts!  Your sponsorship will help to pay for costs associated with the Rosebuds team including our runners rewards of CF Superhero tees, Superhero capes with masks, and small prize/toys to give to all our runners who raise $65, $165, or more.  Join us as we raise awareness and money for Cystic Fibrosis.  Being a corporate sponsor for the Rosebuds goes beyond your monetary contribution, it means you are supporting a tremendous group of young runners who are to be Superheroes for CF!

 

Please be sure to check out our website at www.milesforcf.org/rosebuds.

 

Balentine's Littlest Supporter!

Elena returned to Balentine's office with all siblings in tow to thank the CF "Wish for Wendy" supporters for all they are doing to raise awareness and funds for the cause. 

She enjoys speaking about the disease and mostly making new friends. 

After her talk, we enjoyed walking around the office and found this sculpture by Michael Stipe of REM called "Foxes"! Very cool.

Thank you Team Balentine and to all the friends and family that have supported us in various ways over the years. We are extremely grateful.

CF Fundraising: Yard Sale Style

Kids hosting a Rosebuds CF fundraiser table at our neighborhood yard sale for their December race. Necklaces, earrings, scarfs, by Elena and Artwork by Em...it's awfully sweet.