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Violet is alot like a Starfish...

Last year, the Associate Executive Director of our local Cystic Fibrosis Foundation shared a letter with me from a young girl, named Grace who has Cystic Fibrosis. In her letter she told this story that her mother shared with her... and I'd like to share it with you...

Once upon a time, there was a wise man that used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work. One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

He came closer still and called out “Good morning! May I ask what it is that you are doing?”

The young man paused, looked up, and replied “throwing starfish into the ocean.”

“I must ask, then, why are you throwing starfish into the ocean?” asked the somewhat startled wise man.

To this, the young man replied, “The sun is up and the tide is going out. If I don’t throw them in, they’ll die.”

Upon hearing this, the wise man commented, “But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can’t possibly make a difference!”

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said. “It made a difference for that one.”

The young girl, Grace, who shared this letter said that she, herself, is a lot like a starfish.. And Violet is too. Please click on this link and donate to help make a difference: Violet's Great Strides for Cystic Fibrosis Page

  Violet with her personal sea shell collection.

Violet Tells Us About Her Medications

Violet made a new video to tell us about the medicines that she has to do EVERY SINGLE day. IT TAKES HER 6 MINUTES just to tell us about them. How many minutes would it take you to tell us about the medicines you take every day? These medicines improve Violet's daily life, but she is still at high risk for serious, life-threatening lung infections. Visit this link: Donate HERE to the CFF in honor of Violet to find out how you can help.

Just A Mom

I know, and understand, the value of living "one day at a time." I know that any one of us can be taken from this life at any moment. I do get it. But it's not as easy to accept when the doctor tells you that your tiny baby daughter has a life-threatening disease that will take her from this world too soon.

I'm often told that I'm "a good mom," or that I'm "so brave" and "so strong." But the reality is that I am the furthest thing from extraordinary -- I am just a mom who faces extraordinary circumstances. I'm just a mom who loves her children so much that I feel sometimes like I can breathe. I'm just a mom who feels like it's not fair that I allow myself to look at Jake and Owen (Violet's brothers) and picture them as men at their wedding, or with their own children some day. But Violet's diagnosis stole that indulgence from me where she is concerned. I can't bear to think of a future of which she may not be a part. I can't bear to think of her health decreasing as the years go by.  ... So the understanding of those words, "one day at a time," have become my greatest gift, keeping me safe from those painful thoughts, and simultaneously, my greatest annoyance, because I don't want to live "one day at a time" every single day. I want to think about the future. I want to picture Violet as a bride. I want to know her as a mother. I want imagine myself dying before her.

I made this video a few weeks ago when Violet was sick ... and we thought for sure that she would be admitted again. It's not the video I intended to make. It's hard for me to show it. I've kept it hidden on my hard drive..afraid to expose my true self. This video was supposed to be that picture of me being so brave. So Strong..... I am a faithful person. I believe in God. I believe in the power of prayer.  I also  believe in positive energy. I  believe in good people and that all good comes from the same place in everyone's heart, no matter what our faith. And I am only human. And this is me...just a mom:



PLEASE UNDERSTAND!!! The Cystic Fibrosis Foundation is SO CLOSE to finding a cure. There IS a drug out there RIGHT NOW that has the potential to help Violet LIVE a healthy life. .... My greatest priority in this world is to make sure that she has the opportunity to benefit from this drug. The way I do this is by raising money for the CFF - because they can give my daughter a future - so I will do what it takes to give them what they need.  You can help me get this cure for Violet ... and for ALL of those who have CF.  There are two ways.. Please donate to our personal fundraising page, or please join us... join us and help us raise money to help us get that cure to Violet sooner.
CLICK HERE to help:
www.cff.org/Great_Strides/RebeccaDixon5175

You've been asking.. I'm telling....And then I'm asking...

Violet's Day. Every Day.

Violet starts every single day with a fight. She rises before the sun to do 45 minutes worth of treatments each morning before school. Treatments include three separate inhaled medicines through a nebulizer coupled with a type of physical therapy called CPT  - an airway clearance technique in which she wears a mechanical vest that shakes her violently to help loosen the mucus plugging in her lungs. This is her battle... a series of very necessary events just to help her breathe - something that most of us take for granted.

As soon as she is finished with her morning nebulizer regimen, she has to take care of other very yucky, unpleasant things that most of us don't even have to think about, like brushing the medicine off of her teeth wiping the thick mucus lining from her lips and the inside of her mouth, and flushing her nose with a saline wash and suctioning the extra mucus from her nasal passages.

Then it's off to school (she doesn't usually eat breakfast because she is still full from the overnight formula feeding through her g-button*) where she will visit the school nurse at least two times every day to take about 5-6 pills: with her lunch and with an afternoon snack. The pills are enzymes to help her digest and retain the fat and nutrients from her food. With CF, Violet's body can not do this on its on. The enzymes are essential, or she would, in a sense starve her body, and suffer from malnourishment, weight loss, vitamin deficiency.  Violet also has special privileges to visit the nurse any time she feels tired and needs to lie down - which is quite common with CF.

Violet then comes home from school to another snack and more pills and school work, then she finally has time to relax or play until dinner - and then she again has to consume more enzymes, her specially formulated CF multi-vitamins, her Singular tab, her extra Vitamin D (because even with her special vitamins, she is still deficient),  and then get ready for bed, because she still has to squeeze in another 45-minute nighttime nebulizer/vest regimen.

When treatments are complete, Violet again has to brush the medicine off of her teeth and the thin mucus lining from her lips and inside of her mouth, flush her nasal passages with saline, use her sinus steroid nasal spray, swallow 4 more enzymes and take a Prevacid before *hooking up to a pump which will feed her 1000 calories and 30 grams of fat of formula overnight through a tube into a g-button which is surgically implanted into her stomach. -- Even her nutrition is key. If Violet doesn't keep her weight up, she runs the risk of threatening her pulmonary functions even further. If Violet's weight is down, so is her first line of defense against infection and virus. 

Violet doesn't get to skip her treatments. She doesn't just do all of these things when she's sick. This is Violet's life EVERY single day ... she does all of this for the basic needs of air and nourishment.    

CF is a very complicated disease. It is very mean disease. And while we are so grateful for all of the medicines and therapies that help keep her well, we also know that they are very rigorous and very demanding. We ask lot of Violet. We ask her to do all of these things and expect her to accept them as acts as simple as brushing your teeth. But it's not that simple, and it's not fair.

CF is cruel ... but we CAN do something to help. YOU can do something to help.

Please DONATE NOW OR JOIN OUR TEAM BY CLICKING ON THE YELLOW TABS AT THE TOP www.cff.org/Great_Strides/RebeccaDixon5175  This website is safe and secure and 100% of the money raised goes directly to the CF Foundation in honor of Violet ...Please help us raise awareness and money to find a cure for CF. If you've been keeping up with this page - then you know... A CURE IS NO LONGER AN IMPOSSIBLE DREAM!!!!!! There is hope! Here's what you do!!! GO TO www.cff.org/Great_Strides/RebeccaDixon5175  and click the yellow button at the top that says "Join My Team" .... This is NO FEE and NO OBLIGATION to meet your goal or to even show up to walk ... there is NO REASON TO NOT JOIN!!! .... The CFF makes is super easy to tailor your own page the way you want it. If you have pictures of yourself with Violet, feel free to use them, or if you want to just have a picture of yourself... or your company logo ... or whatever! And you can use any picture of Violet from our UltraViolet Facebook page... Help us raise $75,000 to help find a cure for Violet !!!!!!

Email me if you have any questions! rebexd72@gmail.com LET'S GET STARTED!

BIG THANKS TO THE FOLLOWING TEAM MEMBERS WHO HAVE ALREADY SIGNED UP:

Ms. Taylor Hatfield -- our team's number one fundraiser for 4 years in a row!!!!

AND, welcome new team member:

Brad Dodson ... His story is one YOU WILL WANT TO FOLLOW! -- just take a look at his website .. and prepare to have your heart strings tugged  - tissues ready.  Click here on this link: Welcome to Iron Violet

WITH much love and appreciation,
Rebecca
Violet's Mom

School's out for summer!

It's so awesome to have a break from school! ... Violet has been feeling well and really enjoying swimming and playing with her friends and brothers. But I think the best break for our entire family has been NOT having to wake up at the crack of dawn every morning to get treatments in before school! We have all enjoyed Violet sleeping in and doing morning treatments at leisure.

Today Violet has her BFF over for a playdate, so I took a little snappy of their very happy faces!

Last week we were able to take a little family road trip down to Austin and San Antonio. And just as soon as I find our camera, I'll post some pics and tell you about the trip :) It was very short and sweet and nice to have a change in scenery.

Violet started the summer with a doctor visit that had been on the books for a while. We wanted to wait until school was out if possible since she had already been absent so much. We met with a pediatric ENT specialist to determine whether or not Violet should have surgery to clear her sinuses.  --- During Violet's February hospitalization, she underwent a CT scan of her sinues that determined that Violet is 100% impacted on one side and 80% on the other. So in addition to getting litttle air through her lungs, she is getting almost NO air through her nasal passages. Also, all of that blockage is a breeding ground for bacteria that can cause (and most likely DID cause her) serious illnesses.

The hope is that with surgery (which we have scheduled for mid August) she'll be able to get some relief from some of her symptoms by clearing the blockage AND to hopefully eliminate some of the cause for those nasty little sicknesses that have turned into big issues for her. She is so used to NOT being able to breathe through her nose that it has just become her norm. We just don't think it should have to be that way, and if this surgery can help, then it's worth doing. But trust me when I say that it is never an easy decision to put your child under anesthesia no matter what the possible outcome. This surgery will NOT help improve her lung function. We are aware of this and understand...We have put a lot of thought into this and are hopeful that it will result in her being a little stronger through the next cold and flu season by removing that area for bacteria growth.

For now, we are just letting her enjoy being a kid and letting her play and enjoy her summer. The surgery is minor, but for a CF patient, it is highly possible that she will endure a longer stay than a "healthy" child would. We are mentally prepared that she will most likely be admitted a few days prior to the procedure to optimize her lungs since she'll have to be put under. Then she'll probably stay a day or two after for observation.

As always, we are grateful for your love and support of Violet and her well-being and for the compassion you've shown in helping us reach for a cure for CF through our fundraising efforts and through prayer and positivity. ... Please continue to keep Violet in your thoughts and prayers, and remember that every single day of her life is a fight to stay healthy.

xo,
Violet's mom

Sincere Thanks...

We would love to have a chance to sit and thank everyone personally for your contributions to the CF Foundation in honor of Violet.We have had such a tremendous outpouring of support that our list of who we owe thanks to has become longer than we thought possible. With that in mind, please accept our gratitude and know that while writing this letter, each and everyone of you is personally in our hearts.We are greatly humbled by your show of support, and whether you contributed though online donations, face-to-face, or in attendance and participation of The UltraViolet Rock Show, we are moved beyond measure.

To all those who donated their time to help set up and run things, to Club Dada, to ALL OF THE ARTISTS, and ALL OF THE MUSICIANS, to the volunteers, and the SPONSORS, the companies and families who donated to our raffle and giveaways... TO EVERYONE! The Cystic Fibrosis Foundation is a tremendous organization that utilizes your dollars to their fullest capacities, and in turn, Violet truly does benefit.

The Cystic Fibrosis Foundation is responsible for the great care and attention that Violet gets outside of her home while at a routine clinic visit, or at the hospital, or through the medical supplies and medications that are sent to our home for her ongoing, daily care.

* Without your financial support of the CFF, Violet wouldn't be able to visit 6 doctors/health providers all in one location for her standing appointments.

* Without your donations, Violet wouldn't receive the most advanced treatments and medicine, all made possible by the Cystic Fibrosis Foundation.

* Without you, the CF Foundation couldn't provide programs like the one that helps us cover the costs of one of her very important CF medications.

And because of donations like yours, the CF Foundation has given special thought and care to the research that goes in to understanding just exactly HOW to take care of our CF babies so that they can live longer, healthier lives. On a monthly basis, Violet goes through 600 pancreatic enzyme pills, 60+ vials of Albuterol, 60 vials of hypertonic saline, 30 vials of Dornase Alpha Pulmozyme, 60 vials of Pulmicort, 30 specialized vitamins, 30 vitamin D3s, 60 doses of Nasonex, 60 cans of special high calorie/high fat overnight feeding formula, and 30 tabs of Prevacid…. JUST IN ONE MONTH!! And because of donations like yours, the CF Foundation is SO VERY CLOSE to finding a cure for Violet adn for all of those who fight CF everyday. So from Violet's family… from her PARENTS… thank you so much for supporting our fight. We are so blessed to have you on our team.

It wouldn't be right if we didn't single out some very special people who went way, way above and way, way beyond to make The 5th Annual UV Rock Show and Art Auction possible: Ange Fitzgerald, Travis Williams, Aaron Glissman, Taylor Hatfield, Josh,Phil, Dusty & Brent at Club Dada, Dave Hickmott, John Vineyard, Christy Carroll, Taylor Young, Mark Pirro, Chelsea Callahan, Jill Sones and Fossil Inc, Guitar Center, Republic Distribution, Beth Dotolo, Vince and Dawn Barnhill at Universal Rehearsal and Swag Dealer, PreKindle, Good Records, Natalie Walker and family, James Dunn and The Western Set, The Crazy Ivans, Lovie, El Gato, Trey Johnson and friends.... ALL OF THE AMAZING ARTSTS AND those that donated services, wearables, art, etc...to Lindsay Graham for the amp loan, to Sabrina McElligott and Renee Miller for the time the spent making magnets/pins and to Kristi, Audrey and Ethan Staples who handmade some very cool duct-tape bows and to our Voices 4 Violet crew, Shabby Talebi and Heather Robertson for help during setup and for just being awesome. Thank you Ghost of Blind Lemon at DeepEllumRadio.com, Reid Robinson at Sonic Power Hour 89.3 FM, and Rob McCollum at Good Morning Texas on WFAA Ch 8 for helping us share our event with your listeners/viewers.

Thank you. And congratulations to all of you who have joined us to help make Team UltraViolet the current NUMBER ONE fundraising team in Dallas to help find a cure for CF. (currently at almost $37,000 raised for the CFF!)

Bless you all,

Rebecca and Kirk