Party for a Purpose

What is a party for a purpose?  It is a party that is hosted by someone that is working towards raising money and awareness for a cause.  We host them, we attend them, and we support them every year.  They are usually for Cystic Fibrosis but the type of party varies.  It seems that it is different every year, actually!

There will be a Party at my house that my sweet friend Becky and I are hosting on February 23, 2014 from 2-4.  You can shop on-line to join our cause!  We are asking people to shop with Stella and Dot at this link: http://www.stelladot.com/ts/sgov5 We will use the hostess credits to get items for the silent auction at the Wine and Roses Gala that are guaranteed to bring in some dollars to go towards research that is providing medicine that has benefited Elena already!.  Won't you join us?  The stuff is pretty and it is for a great cause:):)  Thank you to Aimee McDonald, a fellow UGA grad, for being our Stella and Dot consultant!

This past weekend Elena, Emily, and myself helped my parents with their "Party for a Purpose".  Their party was a wine party 

and their purpose was to collect wine and wine related items for the silent auction at the "Wine and Roses Gala" event for Cystic Fibrosis on April 26th, 2014 in Atlanta.  If I can divert for a second and say a HUGE thank you to our friend and fellow UGA grad, Jennifer Vetter, for volunteering her time and talent to create this beautiful logo for the event.

Back to the party; there were 40 people that attended and brought several wonderful items.  However, it was the atmosphere that I love.

Everyone there is happy to be there,

excited to help,

loving talking with Elena,

smiling at being entertained by Emily,

and showing endless support of helping with our cause.


We made some new friends.

Elena with Randy Waters from 11Alive.  

We reconnected with some long time friends.

Joyce Pulver, our realtor and friend since I (Julie) was 2 years old...she is like family!

It was a fabulous evening that I am so thankful my parents asked us to be a part of.  I continue to be amazed at my parent's endless energy that they put forth every year with fundraising, volunteering, and co-chairing for the Cystic Fibrosis Foundation's Wine and Roses Gala.  

Thank you so much Nana and PaPa!

Annie Jr.

This was the big weekend!  Elena played "Duffy" in the musical Annie Jr. 

She has been rehearsing, practicing, singing, prepping, and smiling for 2 months and the time is here!

This last week was tech week where they practiced in full costume and went through the whole show.  I had the fun honor of being the photographer for the tech week run through.  I had SO much fun watching everyone's hard work come together.
Elena had her first Preview show on Thursday night.  Ethan came to watch the second half and brought her flowers after he met Crash who played Sandy. 

Saturday she had two shows.  Grama and Grampa came for her first show and then Nana, Papa, and Dr. McKean came for her night show.

Grama and Grampa

Nana and PaPa

Elena's awesome CF doctor, Dr. McKean, came out to support her show.  She ran to give him a hug.  Having him there was a highlight for her!  I was reminded that the last time he was at St. Oliver Plunkett was for the funeral of our friend and fellow CFer, Kathy Marder.  Elena and I attended the funeral along with family, friends, and their excellent doctor, Dr. McKean.  Elena was just a little thing then and when she saw Dr. McKean, she went sprinting down the aisle toward him and jumped into his arms.  It was hard for everyone there not to cry at this sweet moment.  The relationship you share with your CF doctor is a special one.

Sunday she had a huge crowd!  Me, Daddy, Ethan, Emily, Everett, Nana, PaPa, Aunt Jenn, Will, Aunt Cindy, Uncle Thad, Allison, Brandon, Lindsey, Becky, Jason, Bobby, and Leslie.  So much love and support for every show! More wanted to join us but sickness kept several families at home.

 Elena became fast friends with Isabella who played Annie.

The kids took the opportunity to be in a picture with Crash who played Sandy.

Elena did an excellent job.  It was the most fun to watch her giant smile and see how much she truly enjoys performing.  She is a shining star and we can not wait to see where she goes!  Cystic Fibrosis will NOT hold back this firecracker!

Here are a few pictures from the show.

 Elena with her orphan friend.

 Elena on stage performing "Maybe" scene.

 "It's a hard knock life" Elena's, Everett's, Emily's, and Ethan's favorite song.

"Easy Street" one of my favorite scenes and songs...but picking a true favorite is very hard!

 The full cast shot.  A great group!  Below is the director, Miss Hannigan: Beth Mappes with her son playing Rooster and a fellow Rosebud supporter and CF Superhero playing Lily St. Regis!

This was so much fun!  I cried when it was over just like when I was a little kid watching it in the theater for the first time! Elena is ready for another show!  

I must admit, I would love to be on stage with her next time!!!

Yup, I can't forget... And shouldn't!

Cystic Fibrosis

Every once in awhile during the day I forget Elena has Cystic fibrosis. She is doing so so SO well! 

She is running, 

acting, 

taking karate, 

crafting, 

creating, 

and loving.

Any sickness she has is thrown off so much quicker than in the past. 

When she is well, it is very easy to forget how dangerous it can be to expose her to germs. Cystic Fibrosis....there is never a time to be lazy about it.

I could get lazy with cleaning her neb supplies accurately. I could say, "You are doing so well, just skip that treatment tonight." I could tell friends and family "Don't worry about the (fill in diagnosed germ here). Let's get together anyway."  

And I have. I've done ALL those things at some time or another.  Then I remember. Then I'm reminded. 

Cystic fibrosis.

Elena has cystic fibrosis. 

I can not be lazy about her treatment or her protection from germs.  I must always do my best so she grows up and learns to always do HER best to care for herself.

Why? Here's why.

We lost some more Amazing CFers this week. 

An 8 year old girl ... 8.  

Our Elena is 9.  

We also lost Richard at 52 who coined the term 65roses. Learn more about him at this link:http://www.wptv.com//dpp/news/region_c_palm_beach_county/west_palm_beach/richard-weiss-who-coined-phrase-65-roses-loses-battle-with-cystic-fibrosis-at-age-51

These families did everything they could. I would want to know that we have done EVERYTHING instead of wondering if that skipped treatment is what caused the downward spiral. 

Yes, we allow some down time and we are lenient sometimes. However, I will not forget that Elena's life truly depends on the regularity of her Meds and the protection of germ exposure. 

We will fight for her. All 6 of us in our home work as a team everyday to make sure Elena is taken care of.  Her team expands well beyond our four walls and we are thankful for so much love and support.

Please consider joining our cause www.milesforcf.org  

Adults: 65roses

Kids: rosebuds 

There are events for everyone at all ages.

Or you can donate towards our cause here:http://www.razoo.com/story/Super-E-S/mobile?referral_code=share

Thank you to everyone for following Elena's health updates and for sending your thoughts and prayers our way. Even when Elena is doing great, we still have our bad days when CF wears us down. Your words and support make us want to jump in the air with a smile!

Thank you to our support team beyond our four walls!! (Hey, that's you!) 

Next Event: Atlanta Kids Marathon!!!

This sound impossible or intimidating?  Or does it sounds like a fun activity to work together as a family one mile at time?  I hope it sounds like fun because it WILL be!

Here is a chance to have your child run up to 25 miles (in ANY increment they can handle) between now and April 25th.  Then they will complete their final 1.2 miles on race day April 26th 2014 at the Gwinnett Braves Stadium.  They can then officially call themselves a marathoner as they show off their marathon finishers medal.

This race is for children in Kindergarten through 8th grade.  If you are too young or too old to run with the Rosebuds on this race then we welcome you as volunteers or cheerleaders on race day!

Learn all the details at our website www.milesforcysticfibrosis.com/rosebuds
AND you can register HERE
Be sure to put "Rosebuds" as your school name when you register.

BEST PART...DID I MENTION IT IS FREEEEEEEE! Yup, registration is free!

Bonus: your child also helps raise money for the Cystic Fibrosis Foundation which is working towards finding a cure for CF as you read this! 

This is a great way to get your child fulfilled with giving to others as well as developing a healthy habit of daily exercise.  Extra bonus: It can be done as a family!

Here is Elena's webpage for fundraising.  Elena's fundraising site!

However, THIS is the real reason for this post...her latest fundraising video effort!  Enjoy!

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:)