Zoe for Life

Zoe for Life.... Our journey with Cystic Fibrosis....

Thursday, January 5, 2012

No comments:

Post a Comment

Newer Post Older Post Home
Subscribe to: Post Comments (Atom)

Blog Archive

  • ►  2015 (1)
    • ►  April (1)
  • ►  2014 (1)
    • ►  April (1)
  • ►  2013 (4)
    • ►  August (1)
    • ►  July (2)
    • ►  May (1)
  • ▼  2012 (52)
    • ►  December (1)
    • ►  August (1)
    • ►  July (2)
    • ►  June (18)
    • ►  May (20)
    • ►  April (3)
    • ▼  January (7)
      • Hospital Discharge day
      • No title
      • Zoe will be NPO today, her Dr has her on iv fluids...
      • Hospital admission Day 1Zoe was admitted to Wolfso...
      • No title
      • No title
      • End of year 2011 post....
  • ►  2011 (20)
    • ►  December (1)
    • ►  November (3)
    • ►  October (3)
    • ►  July (3)
    • ►  May (1)
    • ►  March (3)
    • ►  February (1)
    • ►  January (5)
  • ►  2010 (20)
    • ►  December (2)
    • ►  November (2)
    • ►  October (1)
    • ►  September (1)
    • ►  August (2)
    • ►  July (2)
    • ►  May (1)
    • ►  April (2)
    • ►  March (2)
    • ►  February (1)
    • ►  January (4)
  • ►  2009 (49)
    • ►  December (3)
    • ►  November (3)
    • ►  October (4)
    • ►  September (8)
    • ►  August (3)
    • ►  July (2)
    • ►  June (3)
    • ►  May (5)
    • ►  April (2)
    • ►  March (5)
    • ►  February (5)
    • ►  January (6)
  • ►  2008 (27)
    • ►  December (3)
    • ►  November (4)
    • ►  October (3)
    • ►  September (3)
    • ►  August (3)
    • ►  July (2)
    • ►  June (1)
    • ►  May (1)
    • ►  April (2)
    • ►  March (3)
    • ►  February (2)

About Me

My photo
Zoe Isabella
Born April 7, 2004. Diagnosed with Cystic Fibrosis on the eve of her first birthday.... This blog will be a story of Zoe's journey with Cystic Fibrosis. We will try to keep up to date information on Zoe, our family and Cystic Fibrosis news. Thank you for your interest in our lives.....may God bless you....
View my complete profile

What is Cystic Fibrosis?

Cystic Fibrosis is a life shortening genetic disease. CF causes the body to produce an abnormally thick, sticky mucus, which clogs the airways and leads to life-threatening lung infections. The thick CF mucus also obstructs the pancreas, preventing enzymes from reaching the intestines to break down and digest food.

There is NO cure!

Zoe's Current Medications and Treatments

~ Zen-Pep ~ 3-4 capsules with all meals and snacks
digestive enzymes to break down and absorb fats
~AquAdeks ~ 1 daily
special fat soluble vitamins
~Prevacid ~ 15 mg. once daily
proton pump inhibitor that helps with the efficacy of her enzymes
~Azithromycin ~ 250 mg. Mon., Wed., Fri., used for chronic lung infection, Bronchiectasis
~DHA ~ 500 mg. once daily
omega-3 fatty acid to decrease inflammation
~D3~
~Calcium ~ due to CF patients being prone to Osteopenia and Osteoporosis at a very early age
~Mometasone ~ a steroid used in nasal rinses to reduce inflammation and polyps
~Albuterol ~ 3 ml. by nebulizer 2-3 times daily
inhaled bronchodilator to open the airways
~Hypertonic Saline 7% ~ 4 ml. by nebulizer BID
an extra salty sterile solution used to help clear mucus from the lungs & in Zoe's case we are using a face mask so the medicine will go through her nasal passages hopefully keeping her sinuses clearer
~Pulmozyme ~ 2.5 ml. by nebulizer once daily
thins the thick secretions so they are easier to cough out of the lungs
~Flovent ~ A steroid to help reduce inflammation
~Incourage Vest ~ 30 minutes in morning after all 3 nebulized meds
a chest physiotherapy vest that fits on her like a ski jacket, it inflates with air, then vibrates at different frequencies, to help loosen the mucus so she can cough it out
~Manual CPT or Percussor 5000 ~ in evening after nebulized meds
manual CPT is clapping on her lung areas front and back with your hand or a soft percussor cup, the Percussor 5000 is an electric handheld percussor, these are both done for 15 minutes
~Monthly Port a Catheter flushes ~ administered by her home health nurse. 5 ml of 100 unit Heparin
~Food ~ Zoe requires around 2500-3000 calories a day to maintain her weight at a healthy level
~Love ~ Zoe requires tons of kisses and hugs everyday!!!! XOXOXOXO

Zoe's Genetic Mutations

Delta F508 (class 2)
1717-1G to A (class 1)
classes of CF genes range from class 1-5, 1 being the most severe disease causing to 5 causing little to no symptoms

PLEASE DONATE!!! EVERY DOLLAR HELPS ADD TOMORROWS TO ZOE'S LIFE!!

http://fightcf.cff.org/goto/zoeforlife

Links for your information:

  • Toyota Magazine Article
  • Su Vino Winery...fighting CF
  • Article in About.com about Zoe
  • Great Strides Zoe for Life Homepage
  • Cystic Fibrosis Foundation
  • Fl. Times Union Article & Audio/Video "Zoe's Fight"

Wonderful People Who Read Zoe's Blog!

My Blog List

  • Run Sickboy Run
    My New Treatment: O to the 2
    8 years ago
  • A Cure 4 Lil' Chris
    2016 CF Walk May 15th at 11am
    9 years ago
  • My journey with Cystic Fibrosis
    Rest in Peace Aunt Marybeth
    9 years ago
  • Color Me Healthy
    Why I Can Never Let Myself Forget 9/11
    9 years ago
  • Mugga Bugga
    Liverversary
    9 years ago
  • Experiencing Each Moment
    Dead People's Bones (Matthew 23:27-28)
    10 years ago
  • Then Am I Strong
    Around the House Solutions
    11 years ago
  • The Jobes
    GREAT STRIDES 2013
    12 years ago
  • Oh, Mandy
    choo choo
    13 years ago
  • Breezy's Bravery A Fight Against Cystic Fibrosis
    2011 Palm Coast Great Strides Walk
    13 years ago
  • The Smithson Family
    Lainey's Cystic Fibrosis Journey
    14 years ago
  • Crazy Beautiful Life...
    Graduation
    15 years ago
  • My Life ~ as a Woman, Wife, Mom, Daughter, Sis, Aunt, Cousin & Friend and some CF thrown in!
    Happy Fathers Day~!
    15 years ago
  • My CF Son
  • the life of mommy
  • The Schellenberg's 3 A's... Alli, Ashley, & Adoption
  • Cure Cystic Fibrosis for Reilly
  • MomDadJenkins

Contact Us

scottjadaose@yahoo.com

OUR FAMILY

OUR FAMILY
Scott..aka..Daddy

Jada..aka..Mommy

.

.
Tara, 30, and her fiance, Cecil

.

.
Dalton, 27, and Donna our lovely daughter-in-law, 27, they have blessed us with our grand daughter, Ella Faith

.

.
Caleb, 23

.

.
Austin, 21, and our lovely daughter-in-law Morgan

.

.
Alex, 19

.

.
Madison Grace, 17

.

.
Sydney Kaye, 13

.

.
Zoe Isabella, 11
Picture Window theme. Powered by Blogger.