UltraViolet Blog

Just A Mom

2012-02-25T16:23:00.003-08:00

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...

2011-11-04T18:07:00.000-07:00

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!

2011-06-21T12:30:00.000-07:00

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...

2011-05-02T20:12:00.000-07:00

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

Dallas POV - UltraViolet and last minute stuff...

2011-04-14T13:30:00.000-07:00

A lot of you have been asking how Violet is doing ... be assured that no news is good news!

That being said, she actually gave us a little scare early this week. She was complaining of chest pains again and ran a lowgrade fever. Having been through this now ... we knew the chest pains could possibly be caused by mucus plugging, so rather than run her to the ER again, we began some manual CPT (an airway clearance technique) to see if we could mobilize some of her mucus secretions that could possibly be causing the problem. Since her symptoms were accompanied by the fever, we placed call to her doctor, who prescribed her an antibiotic. Seems like this time we were able to avoid a doctor or hospital visit. Her fever is down and she only missed one day of school. Although her past hospitalizations have been difficult times, we are grateful for them and what we have learned through those experiences. We had already been through this before, and her pains this time seemed less severe (but no less cause for worry); however, based on our past experience, it just seemed reasonable to not over-react in this case. We are in no hurry to see a hospital or ER any time soon!

Violet and her family will be making an appearance on Good Morning Texas next Thursday morning (April 21) on WFAA Ch 8... the show starts at 9am... if you can't be home to watch it, set your DVR! We'll be talking about the upcoming UltraViolet Rock Show and the CFF's Great Strides Walk -- The walk will be emceed by none other than the great and fabulous co-host of GMT, Rob McCollum.

And speaking of the big rock show, Dallas filmmaker, Joe Scott - writer and director of upcoming Indie film: The Debut , but together this wonderful video to help us talk about The UltraViolet Rock Show for CF. We are grateful to be a part of the amazing art and music communities in Dallas, and thankful to Joe for allowing us to talk about our part in that scene. Take a look:

Also if you would like to volunteer to work at the UltraViolet Rock Show and Art Auction for CF, you'll get into the show FREE! contact me at rebeccadixon30@yahoo.com ! -- we need help with set up from noon - 2ish on Saturday the 23rd AT the club ... and some volunteers for the event as well. thanks!

Very Exciting Announcement in CF Community today

2011-04-07T07:35:00.000-07:00

"Today the CF Foundation announced the expansion of its collaboration with Vertex Pharmaceuticals to accelerate the discovery & development of new drugs aimed at treating the underlying cause of cystic fibrosis in those who have the most common CF mutation, Delta F508."

Learn more: CF Foundation Announces Investment to Speed Development of Additional Drugs to Treat the Most Common CF Mutation

Violet has two different defective gene mutations and one is the Delta F508, the most common. This new Vertex drug has shown great promise in clinical trials!

Make plans to attend the The UltraViolet Rock Show and Art Auction for CF ... We'll bring the rock and raise the funds... we're full speed ahead for finding a cure....

Update on Violet. Post Clinic Visit. 3/29/11

2011-03-29T13:56:00.000-07:00

My last Debbie-Downer status update wasn't fair.

You're here to follow Violet. To keep up with her. To pray for her and send positive thoughts and to support her as she fights to stay healthy every single day. I misled you when I said, "She is coughing in her sleep tonight. Her Daddy and I want to cry."

Yes. Violet is coughing again. - It just started this week. Her cough isn't major. It isn't severe. It isn't accompanied by fever or low energy or feeling yucky or runny nose or anything. In fact, at clinic visit today, Doctor says she sounds clear. He was very please at how silly and playful she was with him today -- because smiles and giggles = feeling good :)

So I want to explain my comment. So why did I say I want to cry?

BECAUSE I DO! I DO WANT TO CRY!!!

And sometimes I do. I cry long and I cry hard, and then I'm good for another 6 months or so until the next good one is due. And to hear Violet coughing again so soon, felt like our own personal tsunami. A giant wave of defeat to come in and sweep away our contentment, our peace...the current ease of our daily lives. Violet had FINALLY kicked her cough. The cough she fought for an entire year following her G-tube surgery. The one that 3 hospitalizations later, was finally gone.

No cough = peace.

This has been a really rough year on Violet and our whole family. For Violet, 3 hospitalizations means about 10 days of high fever, close to 200 IVs, 3 PICC line procedures, about 25 needles sticks, 84 EXTRA treatments, close to 170 blood pressure checks, 40 nights in a hospital bed and about 35 school absenses.

For the rest of us in the family, it means six weeks of being away from each other and from her. Six weeks of mom missing bedtime kisses with the boys and not getting to send them off in the morning and say, "have a good day at school." Six weeks of sleeping alone at home or on a chair bed in a sleeping bag. Six weeks of no sunshine. ... Six weeks of being incomplete.

I did not intend for anyone to be under the impression that Violet wasn't well at the moment. We are grateful beyond measure for your continued love and support for all of us. We would never take that for granted.

Just that, sometimes I want to cry. Sometimes I'm jealous of all of you who have regular ol' kids. Sometimes I feel like maybe we were the wrong one chosen for this task. Sometimes I'm really scared about the "what ifs." Sometimes I google "CF" or watch youtube videos of hearbreaking CF stories and then I almost die a little. Sometimes I'm only human. Sometimes I let that show.

Here is the update on Violet's CF Clinic visit today: Her lungs sound clear. (YAY!) But because there is a cough present, she was sent for a chest x-ray just to take a look. Her last scan upon leaving the hospital showed big improvement over the one from the ER with the collapsed lung. (again, YAY!) and her weight was down .. we weren't surprised. The dietician suggested we add a daytime tube feeding. So we'll be figuring a way to work that into our day along with a 3rd daily breathing treatment that we are adding back in to try to kick the cough. ... So ... no bad news. just adjustments. This is good. Everything is good.

Here are some fun pics of Violet at Clinic today.. She was having a good time :)

LUNGS?! EWWWW!

Hello, I'm Doctor Violet

If you'd like to help us find a cure for CF, please click here to donate safely and securely, or to help us raise money for the CFF by joining our team.

Team UltraViolet

For more details on The 5th Annual UltraViolet Rock Show and Art Auction for CF click here:

http://ultravioletforcfblog.blogspot.com/2011/03/5th-annual-ultraviolet-rock-show-art.html

THE 5TH ANNUAL ULTRAVIOLET ROCK SHOW & ART AUCTION FOR CF

2011-03-28T09:18:00.000-07:00

can't even tell you how excited I am getting about this year's event! Let me just give you a quick snapshot:

WHEN: Saturday April 23, 2011
WHERE: Club Dada in Deep Ellum (2720 Elm Street)
TIME: Doors at 8:00
COST: $10 minimum donation

PERFORMING:
El Gato
LOVIE
James Dunn & The Western Set
Trey Johnson
Justin/Kristen/Keith from The Crazy Ivans
AND INTRODUCING:
High Seas Drifters
(featuring members of El Gato, Lovie, The O's, The Polyphonic Spree and Austin's Concrete Blocks )

The art auction will include art from your favorite Dallas artists, including handmade items from your beloved crafty friends and knitted items from the amazing Lavada Dixon, Violet's very special Gran ... and more!

More details will be posted as they develop! Make plans to attend!!!

Violet was admitted last night...

2011-02-28T10:09:00.000-08:00

Thank you to everyone for your prayers and concern. Your love and support, as always, add welcomed comfort to our entire family during these difficult times.

I took Violet to the ER last night because she was complaining of chest pains (combined with a fever and labored breathing). X-Ray initially appeared to have possibly been a partially collapsed lung, but now, after review from her doctors shows was excess plugging which, of course, is common in CF. She did test positive for RSV, and the pneumonia is being labeled as acute. It's very unfortunate that she is right back here in the hospital again, but on the flip side, it's very fortunate that we took her to the ER and caught this at the very beginning - within the first day of her symptoms.

A 14-day course of IV antibiotics just comes with the territory. But Violet's fever is down ...and has stayed down without Motrin... and she ate a good breakfast this morning. So if things continue down this path, they will hopefully let us finish her IV antibiotics at home after about 4 or 5 days here in the hospital. As this is V's third admission in 6 months, we are really pulling for this. We need to be at home just as much as her brothers and Daddy need us to be there.

We are waiting now for the PICC team to come and take her down to the O.R. for placement...hopefully in the next few hours. -- but she has already started receiving meds and fluids through her IV and she is acting like she feels much better than yesterday. No chest pains today. - Just again, we will tackle all of these symptoms very aggressively by upping her treatments to 4x a day and getting the good strong meds in her.

Thank you again for keeping her in your thoughts and prayers. Please continue to do so. I will post updates on the UltraViolet page on Facebook. ---

Sincerely,
Rebec

This is what CF is like....

2011-02-27T12:24:00.000-08:00

As her mom, every day I wake up with my first thoughts being about Violet. *will she feel ok? *will she cough today? *will she eat today? *will she be tired? *will she have energy? *will she be OK if I leave her at school?

And every night my last thoughts are about Violet: *will she sleep OK? *will she cough tonight? *will she wake up rested and happy? *will she be OK if I walk out of this room while she sleeps?

This year, CF has really pulled Violet thought the ringer. From her g-tube placement to her flu/pneumonia to her 3 hospitalizations ..... This kind of year makes it hard to focus on the positive things. It's not always easy to take it "one day at a time." .... We're facing issues and symptoms every day from a disease that has no predictors, it gives no warnings, it shows no mercy. And we watch it as it controls her day to day.

This is the scene this afternoon... 102 temp. Out of nowhere....

But it's this kind of day that also keeps us fighting. We have to stay hopeful and positive. Violet fights every day. She rarely complains....and we ask so much of her: *do your vest and treatments *swallow your pills *get your exercise *eat your food *drink lots of water *wash your hands *do your treatments again *swallow more pills *hook up this tube while you sleep.... day in. day out. all day. every day.

We fight for her because she fights so hard every day. We stay positive for her so she can see that she makes us all so, so happy. We fight for her because her life is worth fighting for.

There are 70,000 other Violets worldwide. Precious CF fighters that struggle just to take a deep breath, but who never give up. A cure for them is so close. Please help us get it to them as fast as possible:
Donate to the CF Foundation here. Safely and Securely

Post Hospital Update - Feb 5 2011

2011-02-05T17:59:00.000-08:00

After 13 days at Children's Medical in Dallas, Violet is finally home.

In the four short hours since she's walked through the door, she's already played house, school, legos, ponies, Wii, and PS3... eaten pizza, changed clothes twice and hugged her Mommy, Daddy and brothers and doggies at least a pillion times accompanied by the words, "I love you so much."

What was the culprit of Violet's hospitalization? A COMMON COLD.

A common cold can be a big bully to the overall health of a CFer. What takes you and I a couple of days to kick, turns into a lengthy hospital stay for these CF kids. Two weeks is a common duration for all CF patients... at a minimum. With a 14-day course of aerosol treatments with CPT (a type of physical therapy) and two-three different IV antibiotics and/or oral antibiotics, a CF "tune-up" is a very aggressive attempt to get these patients back at their baseline of health.

So Violet is home. And this is great news... But what we learned while she was admitted is not so great.

We learned a couple of things.

1. Violet has significantly impacted sinuses. In fact, there is 100% blockage on the right side, and 80% blockage on the left. Significant enough that we are considering sinus surgery in her near future to give her some relief of her ongoing symptoms. The surgery itself is a simple procedure for a non-CF patient; however, Violet does have CF, so the surgery will mean a lenghtier hospital stay than norm, and will require a pre-surgery mini-tune-up to optimize her lungs to prepare her for the procedure. After 2 hospitalizations within 6 months, this just isn't something we want to rush in to... yet again.

2. Violet's initial Xray upon admittance showed significant plugging in her lower left lung, and just a lot of "cloudiness" overall. After a week of treatments and antibiotics, there was good improvement, but a 3rd Xray just 3 days later showed worsening airways yet again.

To see this was very discouraging. To see this was the hard slap of reality ... most CF patients get worse as they grow. The disease just keeps after them so much that even after tuneups and medicines, their lungs never really recover, so they just keep fighting to keep up.

Violet's doctor told me. "Her lungs are getting worse." --- It makes me cry again even to read what I just wrote. I can say all day that "she is doing so well." "She's feeling really great... " but the truth is. HER LUNGS ARE GETTING WORSE. Violet has Cystic Fibrosis..... Violet has Cystic Fibrosis.

LET'S RAISE SOME MONEY AND HELP FIND A CURE!

2011-01-18T21:17:00.000-08:00

Please mark your calendars for Saturday, April 23rd! The UtlraViolet Rock Show will be at Club Dada in Deep Ellum. We'll continue to post details as they become available.

In the meantime, learn how you can help us raise money for the Cystic Fibrosis Foundation, who works hard every day to help find a cure for Violet, .... please visit our fundraising link:
Team UltraViolet Rock Show

Violet fights to stay well every day.

We thank you in advance for all of your love and support..

Do You Feel Better?

2010-09-22T11:49:00.000-07:00

I'm making the title to this post, "Do you feel better?" because that's what Violet's brother, Owen, asked her with a hug when he came home from school. It brought a smile to her face:

After her first Play Therapy session yesterday, Violet came home and crashed out on the sofa. She had missed rest time at kindergarten to leave school for the session, and I was sure she worked hard in therapy, so her sudden exhaustion seemed normal. When Violet woke up from her nap, she was feverish and complaining of a headache and tummy ache. And then.. the dreaded cough kicked in to full gear. She's been coughing all day today.

What's the big deal? It's just a cough. Right? Her brother Owen has been coughing for weeks and I remind him, "cover your cough!" And it's that simple. His cough is not a dreaded thing. It will pass. It's probably just allergies or a little bug. I wish I could have that type of passive acceptance of Violet's cough.

But I know her cough, and I know that this time of year we are on a path that will lead us to one of two results:

1.) TOBI: a month-long inhaled antibiotic treatment. It's a twice a day regimen that adds 30-45 minutes to each of Violet's normal treatment times. TOBI treatments will have to start very early now that she's in kindergarten. It will be an adjustment working them into her morning routine

...OR...

2.) Hospitalization: This result will be further down the road. We are lucky that Violet has really amazing doctors who will exhaust every option before hospitalization. I'm still learning to read her signs. When Violet becomes sick enough for the hospital, it is a very slow process. So slow, in fact, that it sometimes goes unnoticed until it's too late.

These 2 results are what keep me on edge at the first sign of the tiniest fever, the tiniest cough, the slightest runny nose. I've subconsciously trained myself to be more aware. To be more aggressive. I become obsessed and consumed with that "what if" kind of thinking. It's tricky, very tricky trying to apply what I know to how I act.

I have to remind myself, and you, that the bottom line, however, is that Violet is doing really really well if you look at the big picture. I know how ugly CF can be. I know how much these kids (and grownups) can suffer and ache and struggle. Sometimes I wish I didn't. (Ignorance is bliss). Then, the "what ifs" wouldn't apply....
I hate the "what ifs."

I'm grateful for the modern medicine and treatments that have helped Violet live a pretty normal life. And yes, when she gets sick, we DO have to look at it differently and treat her differently. But, Violet is a fighter. And if you know her, you have probably figured out that she doesn't know that she is "sick." She knows she has CF, but she thinks of it more as this unfair, annoying, invisible thing that forces her to do crappy treatments. In her mind, there's nothing in life that she can't do that everyone else does. (And we'll do our best to make sure she always thinks that way) The progression of CF is unpredictable. So we'll take it one day at a time, and try not to think about the paths. The results. The consequences. ....all those "what ifs."

Thank you all for watching over Violet. For loving her. Praying for her. Sending her positive thoughts and healing thoughts. It means so much. It really really does.

There is nothing I wouldn't do to make her life easier or better or more comfortable, and your encouragement and love help keep me sane. And strong. So thank you also for all the kind words you share with me.

I'm so glad you've joined me as we follow Violet's journey.

xo, Violet's mom

To learn more about Cystic Fibrosis, please visit: The Cystic Fibrosis Foundation

To learn more about how you can help, please donate or join our team: Team UltraViolet (the fund raising year starts up in October.. you'll be hearing from me!)

At the end of the 2nd week of school...

2010-09-02T08:25:00.000-07:00

Violet is at the end of her second week of school. And sadly, I don't even have a new picture to post!

She's doing really well, making lots of friends and has managed to stay well so far! Her morning routine has been the biggest and hardest adjustment. Violet is up by 6:15 am, so she can begin her treatments by 6:30.
Violet is her daddy's daughter and would honestly sleep until noon everyday if we let her, so this early morning thing is brand new and she is an angry/sleepy little girl until about 7:15 when she finally wakes up and gets excited about her day!

Violet continues to have problems with granulation tissue forming around her button site, which causes pain, which causes anxiety, which causes restless nights, which contributes to the difficulty in her waking.

We had considered the idea of finding a Play Therapist for Violet after she received her g-tube surgery, and then pushed the idea to the back burner when she started doing better with her anxiety. I think now that school has started and she has a whole new set of concerns, it's time to consider the idea again. So that is my mission today: research Play Therapists

I want to switch gears to a quick way that you can vote and help the CFF win money for research. Vote at this link below, but continue to read about Violet's personal experience with success from hypertonic saline:
Help Babies with CF Breathe Easier

We are big fans of hypertonic saline, and Violet uses it daily in nasal spray form.

On her first day of kindergarten, Violet came home with a junkie nose. And we immediately stepped up the number of times per day that we use the hypertonic saline spray. Years ago, even before her diagnosis, Violet's pediatrician recommend to us: ENTSOL which is available without a prescription from your pharmacists. Turns out, that it is a miracle in a bottle and equally miraculous is that hypertonic saline is also a commonly used substance for Cystic Fibrosis. We use it for Violet daily at our nighttime routine, but in times when it appears that a cold is coming on, if we catch it early enough, it always seems to get it under control. Violet currently does not use the inhaled form of hypertonic saline, but if it can work so well in tiny little sprays into her nose, I can only imagine how well it can help this babies when it is inhaled into their systems. Please vote at the link above so that the CFF can earn more money to continue to explore and be successful with hypertonic saline usage.

Side note/promotion: I don't work for ENTSOL, but a note to parents: anyone can use it. It works so well, that I use it on everyone in my house when they start to get a cold or are having allergies. My Dad even swears by it! It's safe to use every single day. Just ask your pharmacist. if they don't have it behind the counter, they can order it for you.

Update on Violet - visited GI Clinic this morn

2010-08-19T11:31:00.000-07:00

I took Violet into the G.I. Clinic today so her nurse could get a good look at what is going on with her button.

Every thing looks fine. All the leakage is normal. The balloon level is fine. There appears to be nothing wrong. so.....

I think Violet is experiencing some anxiety. Anxiety about the excessive leakage last Saturday. Anxiety about the start of Kindergarten next week. Anxiety about the combination of having CF and a button and being in Kindergarten next week.....this could possibly be the root of all of these problems she is experiencing.

The good news is, our GI nurse gave us some really cool PAIN FREE supplies to help with drainage around the stoma. We're going to treat and clean using these things and continue to stay positive.

Please keep us in your thoughts. I have 3 days to get Violet mentally and physically ready for school.

As always, thank you for your prayers and positive thoughts for Violet and our family.

We are so grateful to know so amazing people.

Stay tuned...

One Day At A Time.

2010-08-17T10:19:00.000-07:00

We take care of Violet in a way that is not a chore or a burden, but just a way of life. Just like we would feed all of our kids, or bathe them, or kiss their boo boos. We don't treat her like she's a poor sick kid. We just do the things we do because it keeps her healthy. This blog is not meant for you to feel sorry for me as her caregiver. This blog isn't about me at all. If you take anything from staying involved with this blog and from reading about Violet's journey, I hope it's that you want to help. That you'll get involved with the UltraViolet Rock Show or Team UltraViolet or CF Foundation or the Great Strides Walk, or donate your money, and help us find a cure for Cystic Fibrosis.

That's not to say that Violet doesn't need your special prayers or that she doesn't have her moments where she is just completely fed up with this whole thing: the treatments, the pills, the piece of plastic on her stomach, the coughing, the poop issues, the sinus issues, the dry lips, the gagging. Violet puts up with a lot, and I'm very proud of her tolerance for these things.

Some of the things that I will write about, may not be easy to read, but I have decided to keep the blog up and give you a peek at Violet's life. Good or bad. Happy or sad.

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These past couple of days, Violet has had some issues with her g-button. Granulation tissue continues to form and gooey drainage leaks around the stoma. (In medicine, a stoma is an opening, either natural or surgically created (artificial), which connects a portion of the body cavity to the outside environment. - granulation tissue is the body's way of developing tissue to heal a wound (so the stoma is trying to close, I guess).

When Violet was doing her respiratory treatment on Saturday night, she told me that she was leaking. So we checked the water level in her g-button (the button is held into place by a water-inflated balloon on the inside) and it was indeed low. It wasn't clear to us at the time if her balloon had burst, or if it was leaking inside, or if the pressure from her treatment caused the excess leakage. So we reflated the balloon and we are checking it every other day. It's low again, so we scheduled to see a G.I. nurse on Thursday.

(She has also developed a new cough, post virus and fever, and so we have also scheduled to see her CF doctor on Thursday. We have to get her well before she starts school next week.)

When I got Violet out of the bath last night, I noticed that the granulation tissue was a little bloody looking and swollen. We have a topical steroid ointment that we can apply, so we did that as we prepared her for her overnight tube feeding. She feel asleep quickly, but tossed and turned and moaned and kept yelling "No! Don't touch my button! Leave me alone!" and other things along this line. This went on from 9pm - 2am . Each time, we would run upstairs, stroke her hair, kiss her forehead and tell her "It's OK." - all the while, she was asleep. Then, just after 2am, she began to cry, and this time when I went up, she was awake. She said that her button was hurting. So I unhooked her feeding, and brought her to bed with me. In the dark, her stoma looked a little yucky. She wouldn't let me get a good look at it though, she kept pulling down her shirt and crying that her button was hurting. ... It's not supposed to hurt, yet this was a battle I didn't not want to have at 2 o'clock in the morning. I calmed her down, assessed that she wasn't in a concerning pain, so I comforted her and she went back to sleep. Now peacefully.

When she awoke, I was able to get a good look of the stoma. It didn't appear swollen, but definitely gunky and a little bloody. She resisted as I cleaned it. She didn't want me to look at it, fearful that I might find something wrong. Her instinct was to tell me that it hurt, hoping that I would stop if it hurt, not realizing that the more she said it hurt, the closer I was to taking her to the emergency room. We did a couple of little tests on her to determine if she was in real pain, and she appeared to be more scared that hurt, so I was able to convince her to let me get a good look at it and clean it really well.

I don't know what else to do. So I wait for our doctor visit on Thursday.

The button isn't going away. The CF isn't going away. We learn so much as we go. We have to take it literally one day at a time. That phrase "one day at a time," is an easy one to throw around and take for granted when you are well. But to patients and families with CF or other life-threatening or terminal illnesses, it's just how it is. We follow the rule without even trying. We live one day at a time.

Here is a picture of Violet's G-button. All cleaned up, it looks pretty good. You can see some of the leakage around. We struggle to keep it clean, but we are encouraged by others that some day it will not leak anymore.

Getting Back To Normal

2010-08-13T13:05:00.000-07:00

After 3 days of fever, Violet is feeling like herself.

We visited our Pediatrician yesterday and it was all good news: Lungs, Ears, Throat, all look/sound good. Her g-button site was good. Her strep test came back negative. - So it was up to us to keep her comfortable and help her ride out the symptoms. Some cruddy little virus got her.

Today, Violet is up and around. She tolerated her breakfast and her treatments without complaint (or persuasion). We're spending today cleaning up and sanitizing her bedroom and all of her neb cups and syringes.

Looks like she's be happy and healthy for the first day of Kindergarten. Now only a week and a half away!

"You Worried Over Nothing" (I Hope)

2010-08-10T20:18:00.000-07:00

Tonight, right after Violet finished her treatments, she became restless and started moaning and wanting to be held.

Without warning, she had spiked a fever. I noticed immediately how warm her skin was next to mine. Her temp was low at just over 100.5, but she was just not acting right.

I poured her a cup of ice water, made up a comfy spot for her on the sofa and fetched her favorite snugglies: Purple Bunny and Uni, her purple unicorn PillowPet. But all did little to comfort her.

She fell asleep in my arms and I carried her to bed. I can hear her moaning and tossing and turning as I type. (I still keep a baby monitor in her room, because I can't sleep unless I can hear her breathe, and also I like to be right on top of it if she suddenly starts an overnight cough.)

With Violet's brothers, a fever is usually nothing to worry about, especially on the first day. I just make them comfy and let them ride it out without much worry. But with Violet, a child with Cystic Fibrosis, my mind immediately starts to race. - what if it's pseudomonos? What if it's an infection from her MIC-KEY button? What if this is the start of something that's going to put her in the hospital? What if? What if? What if?

I know the rules. Especially the one about "Don't worry unless there is something to worry about." - And knowing is half the battle. Right? I wish it were that easy.

Tonight, I will continue to race upstairs with every restless moan, and I will most likely even bring her into my bed to keep her close. But most of all, I will say a special prayer for healing so that this tiny little fever is gone by morning. Then I can say to myself, "Self, I told ya so. You worried over nothing."

Long Overdue Update on Violet

2010-08-09T19:38:00.000-07:00

Summer has come and whisked us all away in its chaos and fun. Summer is long enough that it seems like I would have posted an entry by now, but alas, distractions come tenfold at home with 3 kids with no daily routine!

Today is very special because yesterday we celebrated Violet's 5th birthday. She opened her presents - among her favorites: Pinkalicious & Goldilicious, a Unicorn Pillow Pet and a Pink Nintendo DS!

I'm posting a link to our facebook note written in honor of her special day.

UltraViolet Rock Show for CF on Facebook

Violet has had a great summer! She continues to gain weight thanks to her nighttime feedings by feeding tube, and she has been getting tons of exercise by swimming and riding her bike and playing with friends.

In just a little under two weeks, Violet begins Kindergarten! Oh the fear I have of the public school system and all of its germs! It will be an adventure worth blogging about for sure.

Thank you again for your continued support of The UltraViolet Rock Show for CF, The Cystic Fibrosis Foundation, Team UltraViolet and Little Miss Violet herself!

All Things Violet....and lots of love and thanks to go around!

2010-05-23T10:25:00.000-07:00

I have a lot of good news to report on Violet!

I'll start with our biggest and most important news: VIOLET GAINED ANOTHER 1.5 POUNDS!

Her weight is vital to her overall health and for me (as Mommy) this is just more assurance that we did the right thing in having her feeding tube placed. It's been a very long 3 months, but we finally have a date scheduled for her to change from her feeding tube to a more convenient mickey button (see www.mic-key.com for more) ... The switch is scheduled for June 10th. This will be an outpatient procedure. No cutting, but she will have to be placed under anesthesia as the surgeon will have to go in endoscopically to view the inside of the stomach and confirm that placement is secure. Please keep Violet in your prayers and thoughts. She is nervous about going into the hospital again...

More good news is that Violet's lingering cough that she's had since her surgery in March is miraculously gone! A true answer to my prayers... because that dern cough really worries me! so YAY!

And last - and you won't believe this... because I don't! -- Violet is DONE WITH PRESCHOOL - and she is off to kindergarten next year! it's so crazy! i can't believe she is old enough to be in kindergarten already! And what a blessing! .. It's because of all of YOU! and your help in helping us find a cure for Cystic Fibrosis that Violet can go to kindergarten! Not too long ago, children with CF were lucky to live to school age... and now here we are in 2010 and not only is Violet going to school, but she's going to go as a strong, and healthy little 5 year old with many years ahead! and lots of time to live and learn and grow.

And on that note... I'd like to share my endless gratitude and thanks for all the love and support we get from you....Did you know, that Team UltraViolet (with your help!) raised more than $22,000 this year for the Cystic Fibrosis Foundation?!!! 90% of those funds we raised go directly BACK into research and development to help find a cure for Miss V and others who fight CF every day.

MANY THANKS once again to everyone who donated to Team UltraViolet and for those of you who supported our fund raising efforts!

Special thanks go out to:
• John Vineyard for flying in for the big rock show and for helping us with our ultraviolet design
• Beth Dotolo for our new blog, website, sponsors and wow... so much more..
• Kevin Dotolo cuz he's awesome and I know he did a lot too, but I always end up giving Beth credit for every bit of it!
• Chelsea, Khurk, and Kim at The DoubleWide for making our UltraViolet Rock Show and Art Auction the most successful to date and so super awesome!
• Taylor Hatfield: who donated our Photobooth and UltraV bags and Wish Jewelry and who is more than a sponsor for our team and event, but she is also Violet's (and my) special angel. We are so grateful for all you do for our family and our team.
• Ange Fitzgerald who heads up our Art Auction which wouldn't even be possible without her.
• Travis Williams who is 100% one of the best guys we know and he showed up and took charge of organizing and setting up our auction items
• Voices4Violet - from Plano Senior High who took Violet into their hearts and helped us raise awareness about CF and also helped us set up for our Rock Show ...
• Ziff and Ross - who raised a ton of money for our team and who for the past 2 years have flown out to Dallas from NJ to walk with us and support us ... xoxoxo!
• Wendy Hames - b/c she is a top-notch fundraiser! she joined our team 2 years ago without even knowing us personally, and has since then become a very special friend.
• The CFF - for all that you do to help Violet live !!! we LOVE her! and we want her here for a very very long time! We'll keep doing all we can to make sure that you do all you can!
• Kimberlee, Tony, David and Lucille Edwards who totally took charge at the auciton end!
And of course, please give lots of love to the sponsors, musicians and artists who volunteered their time and talents:
Musicians/Bands: Ryan Thomas Becker, Lovie, El Gato, Orange Peel Sunshine, Corey Howe and Madison King..
artists: Aaron Glissmann, Abbie Chesney, Adelle Read, Alicia Stepp-Woody, Amanda Norman, Amy Sheppard Scott, Andrea Garramone, Ange Fitzgerald, Angela Faz, Beethings, Ben Franklin, Brent Couchman, Cathey Miller, Chris Meuller, Carole Holding, Dana McGuire, David Marrett, Dru McCabe, Dzigns by D, Erica Fellicella,Good Records, Jennifer Gregory, Julie McCullough Kim, Justin Rollins, Kate Mackley, Kelsey Kincannon, Khurk Meader, Kim Clack, Laura McCracken, Lauren Upchurch, Lavada Dixon, Linda Glissmann, Mark Niemi, Matthew Orwig, Matthew Rader, Melanie Poehls, Milton Adams, Murray Street Coffee, Nest Interior Design, Nickie Feddersen, Pamela Michelle, Randall Mosman, Robb Conover, Sissy Benedetto, Stephen Zang, Susan Migdol, Tanya Meurer, Travis Williams, Trey Kazee, Trisha McCracken, Vanessa Neil, Dustin Wallace, Dowdy Studio, Jeremy Collins Christian, Austin Kleon, Carly Remer, Tony Bones
sponsors: The Doublewide, John Vineyard Graphic Designs, Prekindle.com, Nest Interior Design, BellINITO Letterpress Studio, Precision Delivery Services, Brynn Baggot Public Relations, DME Solutions, Kevin Dotolo Photography, Aspiring Kennedy, Ange. F. Does Photography

The Big Rock Show...

2010-05-11T16:59:00.000-07:00

Thank you so much to everyone who came out and supported the UltraViolet Rock Show and Art Auction for CF.

It wouldn't have been possible without the sponsors, the bands/musicians, the great folks at the Doublewide, the artists, Taylor's boothBooth, Ange Fitzgerald, Voices 4 Violet, and my family ... and EVERYONE who came and had fun and spent lots of money! ...

Together, we have raised $21,000 for the Cystic Fibrosis Foundation to help cure Violet and everyone living and fighting CF everyday.

Violet explains her medications.

2010-05-05T22:37:00.000-07:00

Here is a look at all of the medications and treatments that Violet endures multiple times a day to help keep her healthy...

Please help us find a cure and donate to the Cystic Fibrosis Foundation in honor of Violet:
www.cff.org/Great_Strides/RebeccaDixon5175

12 days left until the UltraViolet Rock Show and Art Auction for CF!

2010-04-26T21:29:00.000-07:00

Last week, I interviewed Violet about her treatments and medicines that she takes every day to help her maintain her health as a CFer. I'm currently editing and working on the video... but in the meantime here is some ultimate cuteness while you wait:

OFFICIAL CALL FOR ARTISTS/DONATIONS - 4th Annual UltraViolet Rock Show and Art Auction for CF

2010-03-31T14:52:00.000-07:00

Call for Artists! - Call for Donations!!

UltraViolet 2010 featuring live performances by LOVIE & EL GATO, more bands TBD.. Booking courtesy of the Double Wide

all proceeds benefit the CFF.org

May 8 @ The Double Wide
Art/Donation drop will be 5 pm, day of the event.. other arrangements can be made if absolutely necessary.
please submit via email of whatever you are willing to donate. if your are donating ART, please send a jpeg to Ange @ angelina.fitzgerald@gmail. com . if you are donating other handmade items, please email ange with a description of your donation.

put ULTRAVIOLET ART DONATION in the subject line
provide the following info per donation:
1. title
2. artist name
3. size/dimensions
4. media
5. suggested minimum bid is $20 on all donations

We will also accept other items for donation!!! Last year we had electronics and baked goods and jewelry in addition to original art work and photography.

100% OF THE MONEY WE RAISE AT ULTRAVIOLET, GOES DIRECTLY TO THE CYSTIC FIBROSIS FOUNDATION IN HONOR OF VIOLET! and that money is used for critical medical research and therapies that are so important to Violet's every day health and to the hope that WE CAN HELP MAKE CF STAND FOR "CURE FOUND!"

*for the love of Violet. let's make art for a cure and please save the date May 8th. Double Wide.

--
ange f | photographer | angefitzgerald.com | photopol.us | 214.733.2806

Violet had the best day. Here she is in bed with the new puppy that aunt kimberlee got her. She has started her feeding already. See the tube to her left on the bed.