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.

Reading too much?

For those who know Elena well will know that she loves to read. She loves to read any book she can get her hands on. If there is not a book to read, she has recently taken to writing her own book. 

After she recently blew through almost all the books in our house including attempts at books like Jane Eyre, she finally resorted to reading health books. Last night, she asked if she could start reading an educational book for young teens about cystic fibrosis. My knee-jerk reaction was to say "heck no!" With 6 lives lost this week due to CF (4 in one day and 2 under 10 yrs old), I'm not wanting my little girl to learn any of the harsh reality of what is ahead. However, she's going to have to learn and understand more about what she is up against. For a 10-year-old she is extremely mature.

Elena is 5 inches shorter than me. She is already borrowing my clothes and can just about fit into my shoes. Needless to say, she is growing up so fast right before my very eyes. 

I will let her educate herself on this disease.  She is smart, she knows what she has and that it can be bad, very bad.

Thank goodness for all the wonderful CF role models we have. They give us hope. The Reaching Out Foundation, the Cystic Fibrosis Foundation, the Miles for Cystic Fibrosis organization, and Rosebuds all give us hope. The many CF families whom I have met over these last 10 years give us hope.The CF doctors and their amazing staff give us hope. The genetic researchers and the pharmaceutical companies give us hope. 

So yes, Read On Elena. Educate yourself and arm yourself for this battle that you will have in your life. You will fight it and you will win it because you are surrounded by a lot of love, a community filled with hope, and a lot of amazing people fighting with you and for you.

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Update on Elena's reading... She read the book in 2 nights and her response when I asked her if she had any questions or concerns, "No. I pretty much understand what I'm dealing with. This just filled in the gap."  Truly way way grown up.

Clark Howard

Thanks to Nana and Papa's winning bid, Elena met, followed, sat in the car of, and listened in/partcipated in the show of Clark Howard!

This young lady is making connections everywhere!

 Clark's car is now Elena's favorite.

Thank you Clark Howard for being an excellent host to our sweet 10 year old and her excellent grand parents.

Always educating about CF!

Our little "Wish for Wendy" Cystic Fibrosis fundraiser ambassador speaking to her softball team at their office in Buckhead. Go team Balentine!

 She was armed with her Bulletproof Coffee and a  note card with questions to ask herself so she would stay on cue.

 She really loves to speak to a crowd.

 She prefers a few hundred, but 25 will do, too.  Especially when they are friends to the CF community!  She met the CEO Mr. Balentine and gave him her business card!!  She made the room cry and laugh; sometimes at the same time!

She made a call on her "retro" phone to tell family about her new connections made.  Her goal is to meet Jimmy Fallon when she is in New York.  She met TWO people that have a connection.  :):)  One that wants her 10 year old son to be Elena's boyfriend. AND the entire office which was so friendly and supportive.  It was wonderful to look around the table and see our CF family grow.

 We enjoyed a post speech breakfast at our favorite place, Waffle House!

Thank you Team Balentine for welcoming us into your work place and treating us like family.  We are SO excited to help your team succeed in many ways!  Let's "Catch a Cure for CF" together!

Early morning Treatments are more fun with a friend!

Elena has friends that are old enough now to ask questions about CF. Elena is old enough to answer them herself. Mommy just gets to sit back and try and hold herself together as she listens to children comprehend what Cystic Fibrosis is.

 

Friend: "Does having CF hurt?"

Elena: "No, the treatments are a pain, my tummy sometimes hurts, but I'm not in pain all the time."

Brother: "Elena, you will die with CF won't you?"

Elena: " Yes, I'll have it when I die because even a 'cure' won't get rid of it."

Emily: "We all will die sometime."

Friend:  "I don't know why, but watching your cf YouTube videos makes me sad."

Mommy's silent thoughts: " Me too."

So thankful for good friends that celebrate and embrace who Elena is and feel comfortable enough to ask her questions about life with CF. She's a very fortunate young lady.

My aunt said that she thinks I use busy, fun, and silly stuff to distract us all from the stress and sadness that CF can bring. I hadn't thought of that but she may be right! So what sillyness should we take on now 

Melts our hearts and our ice cream.

Super fun day for our Rosebud CF Superheroes!  We were able to deliver some super-sized checks to the Reaching Out Foundation and the Cystic Fibrosis Foundation!!!

First we met Susan Burroughs, the founder of the Reaching Out Foundation.  She helps local CF families that are struggling financially.  Some months there are CF families that have to decide if they will spend their money this month on groceries for their family or CF meds.  Susan is there to help so they don't HAVE to make that choice but can instead afford both.  The ROF is such an important part of our Georgia CF community.

Next we met with the Cystic Fibrosis Foundation that helps fund research on a national level.  Their funding of research has resulted in several of Elena's current meds that keep the difficulties of life with Cystic Fibrosis at bay.

We were treated to ice cream on this hot July day!  The kids really liked this day.  Lunch out...ice cream...and zip lock baggies of gummy bears to take home.  Made for a wild afternoon!

The Rosebuds are so thrilled to be a part of making the world a better place through their involvement with Miles for CF.  Our teams 65ROSES (Super Adults) and Rosebuds (Kiddo CF Superheroes) are quite a dynamic duo!  Thank you to the people behind these organizations that are truly making a difference in the lives of those with Cystic Fibrosis.  We are thankful for EACH of you and your dedication to adding tomorrows to those living with CF!  You simply melt our hearts!

Oh NUTS!

Elena had her follow up with Dr. McKean today and this is what we learned:

-She has edema in her lower left lung.

-Her lung function is still down and Dr. McKean has decided to call it.  She has a new normal which is unfortunately low.  That is not news a CFer wants to hear.  That was the only bad news we got today!

-Fungal and bacteria free according to the bronchoscopy results!!! NO Pseudomonas!!

-We have one outstanding test we are awaiting results for that we should have before the end of July.  It is a TB like test.

-She is NOT allergic to peanuts, Brazil nuts, coconuts, or pecans. However she IS allergic to almonds, cashews, sesame seeds, pistachios, and hazelnuts.  We have added that to the list with soy and dust mites allergies.

OUCH!

-The upside...she can eat all the boiled peanuts and candied pecans she desires!

We will continue 3 a day treatments in hopes that we can get an improved lung function at her appointment in 6 weeks back at this office and prove this low "new normal" WRONG!

To celebrate, we went to IKEA...wait, what?  Yes, I took 4 kids into IKEA. It sounds like punishment but it was fun because it was a giant building full of rooms to play house in!  We were on a mission to find a cart for Elena's vest and nebulizer.  We found it!  We brought it home and Elena put it together herself.  Now she can move from room to room with ease to do her treatment where ever she pleases.  This is a very big deal!  This machine is HEAVY!  Two thumbs up for making CF living a little more fun and all with a little rolling cart.

We will be back to our awesome CF dr office in 6 weeks to show CF who's boss.