It has been an eventful fall for our house…wonderful…but busy! I think it has been so much fun because our “CF” life seems to be stabling out. Now, I’ve been told, WARNED, I should say, that this is the “honeymoon” stage of CF for us. I’m trying not to think of it that way. It has officially been a glorious 2 years since Zoe has been in the hospital! I’m not in denial….I KNOW first hand how CF can take over very quickly….I watched it with my best friend last year at this exact time. Then she died. December 10th. 4:28 a.m…..as I held her hand. So, I KNOW. But I’m going to take this time of good health and ENJOY every minute of it! I’m going to try to cap what we did to kind of follow the slideshow! Fall started off with warm, sunny breezes… I think I put the pics of Graves visiting out of order....but...he did visit us in early fall. Graves is a very dear friend of mine and now our family. He lost his best friend to CF also. He also was very good friends with Mel, my bestfriend. He was there via phone/text the whole time I was in the hospital with Mel. Then he spent the whole weekend with me and my son/daughter in law after Mel died. We drove through tons of ice and snow...all to get to Mel's funeral. Love ya Graves!
Our oldest daughter, Tara came to visit with us for a week! That was wonderful…GIRL time finally for me! Caleb (our 19 yr. old son) had his birthday while Tara was here, we ate and celebrated at our favorite Mexican restaurant. Caleb also got a job…we are very happy for him! Austin (our 17 yr. old son, the only one in public school) was inducted into the Beta National Honor Society! We are so proud of him! We have not been to either sets of parents houses since Zoe’s birth. My parents (grandma and grandpa) live in East Tn., the mountains. Scott’s parents (nana and pa) live in southwest Florida in the winter, Vermont in the summer. Zoe has always gotten so car sick, she throws up constantly. We discovered Dramamine! Oh my, what a miracle drug for Zoe. She can finally travel without throwing u,p. So we decided to hit the road this fall and visit both homes! We did my parents first…my sister, (Alana, Taylor and Brandon) and her 2 children joined us. We rented a 12 passenger van and hit the road! By some wonderful miracle, it snowed the first 2 days we were there! Zoe’s big wish was to see snow…she had never seen it before. It was beautiful. It was so good to see my mom and dad, brother Andrew, his lovely wife, Courtney and their 2 precious children, Trenton and Jax. It was a wonderful visit of great food, dominoes, horse riding, candy shopping, playing in the snow and plenty of talking & laughter! When we got home, it was time for Scott’s parents to come through on their drive from Vt. To Fl….it just happened to be the weekend of one of our favorite CFF events, Moonlight Martinis. My sis, Alana, joined us also. It was a wonderful event with plenty of donations given to the CFF! Then there was Halloween…the dressing up…going to a Starlight Foundation hayride, corn maize, candy, etc… By the way, if your child has CF, look up the Starlight Foundation, they have branches all over. They do super fun, nice things for your whole family once a month! Then the CFF Singles pumpkin painting. CFF Singles greatest night was next. CFF Singles is a group of single, professionals from the Jax. Area that commit to the CFF to raise at least $1500.00 each. Some raise a lot more. They get placed on one of 4 teams that has an Ambassador. Zoe has been an Ambassador for a few years now. Team Zoe! They are a great bunch of people. The greatest night celebrates all the money they raised. We are so fortunate to have so many wonderful people working towards a cure for CF!
Next was going to Scott’s parents in southwest Fl. It was beautiful weather…warm and sunny! They welcomed us with open arms…tons of great food, cocktails, card games (nana and I didn’t win…uughh! Maybe next time!). Then they had a few events planned for us. First a nice beach day, collecting shells and sharks teeth, then ice cream at a cute little shoppe. The next day was Thanksgiving meal….YUMMY! It was wonderful! Next was a ferry ride to a private island….the ferry driver was so nice, he let Zoe drive the ferry! She was all grins! Then a nice walk and pics on the beautiful beach, dinner in the island restaurant. It was all terrific and we felt spoiled! After all that….we came home to decorate for Christmas! My favorite time of year! Zoe did get sick after all the travels….but her docs had already called her in a huge bottle of Bactrim. She has been on it for a couple of weeks now. Her sinuses are still pretty yucky, so we will give her the full 3 week course and go from there. Well, if you read all this…congratulations! This is what happens when I don’t update often enough. So sorry! Take care of you and yours…. Jada
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
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