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:
WITH much love and appreciation,
Rebecca
Violet's Mom
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