A few more miscellaneous pics my beautiful wife Jada just forwarded me from her iPhone .... As she sits right beside me :-) .... OMG .... I just looked back inside at Zoe after she coughed during vest... She's Sooo sleepy ...! Well a few more pics.. Enjoy!
Well... At the risk of repeating ourselves ... What else can we say?? We are so very, very grateful that words cannot adequately describe Zoe's incredible dream trip here to the beautiful island of Oahu... Today we snorkeled in Hanauma Bay and later enjoyed a fabulous late lunch at Dukes on Waikiki.... Fantastic...!!! Right now we are relaxing in our suite after a bite to eat on the 30th floor club... Zoe's doing her breathing treatments right now and will be doing her Chest Physiotherapy (CPT) shortly.... CAN'T ESCAPE CF!!! After this perhaps a game of cards or simply sitting on our balcony and enjoying the surf for awhile before bed.. We've taken a plethora of pics and I PROMISE we will post a number of them shortly after we arrive home (edited from our Cannon). For now all you may see are a few iPhone pics... Which we hope you enjoy!
Tomorrow Zoe will be attending the Mauli Ola Foundation surfing clinic for CFers .... I believe in Waikiki actually, and then... We will proceed to her Dream Come True... We will visit Sea Life Park where Zoe will actually get to swim with the dolphins...!!!!!!!!! Hurray Zoe !!
I do want to take a minute and extend a very warm thank you to Mr. David Myiamoto of David Myiamoto and Company Photography here in Oahu who performed a wonderful professional photo shoot of our family here at the Sheraton Waikiki .... We encourage anyone I interested in this to seek out his services at davemyiamoto.com.
In ending for tonight I would like to say a short thank you to the wonderful family I actually met in the elevator a few hours ago whom I was able to share just a little bit about Zoe and our family with..... Thank you for your values and for your love for this great country...
PS: I suppose we need to move our contact info up.... Anyone wishing to contact us please just scroll to the bottom of the web page .... And you will find firstname.lastname@example.org
God Bless.... Take care of you and yours... Scott........Zoe's daddy
Our resort... The Sheraton Waikiki, Sea Life Park... Where Zoe swims with the dolphins, Hanauma Bay for snorkeling, Pearl Harbor private tour, Honolulu Zoo, Paradise Cove for a luau, professional photo shoot, and Cystic Fibrosis surf clinic sponsored by the professional surfers of the Mauli Ola Foundation... To name a few things!! Once again, from the bottom of our hearts, thank you....
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....
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
~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!!