A very generous man offered his beach house for our family to use a couple of weekends ago! We haven’t been on a family vacation in years, it was much needed and appreciated greatly! The house was perfect , the view was perfect, the company was perfect, I never wanted to leave. I have always felt a calling for the beach, maybe I was meant to be a beach bum. Except for the bum part. I spent countless hours sitting on the deck, enjoying the sun and ocean breeze. We took all of our food for meals, we tried to make it extra special for the kids, so we had steak one night, mahi another night, Belgian waffles (with fruit, whipped cream, butter, syrup, sprinkles), icecream cones, eggs benedict. It was good. We literally stayed at the beach house the entire time. Scott did have to go into work a little on Sunday, so he brought pizza for lunch that day, other than that, we cooked. It was so relaxing. The kids got up at sunrise the last morning and went out on the beach collecting shells. They spent a lot of time collecting shells, they ended up with well over 200. The house had every thing I would have in my house. Stereo system that played in every room with controls in every room, even played out on the deck. Built in cutting board on the island, Kitchen Aide icemaker (made those perfect little ice cubes for drinks), wine cooler. Our shower had 4 shower heads and was the same size as my walk in closet! Oh yeah, the music played in there as well! A washer and dryer on both floors. The most amazing thing the kids loved, an elevator!! You drove your cars into the 3 car garage on the bottom level, then you could load you stuff into the elevator, go up to the 2nd or 3rd floors. It was a blast! I haven’t been that relaxed in forever. It was great for our entire family. So, if the generous man that blessed us with this time at the beach, reads this, THANK YOU from the bottom of our hearts!!!!!!
Did you know that approx. 98,000 people in the country die every year due to medical mistakes???????? It is right up there with the top killers, along with cancer, diabetes and heart disease. Wow. I didn't know it was that bad until I read an article yesterday in this months Good Housekeeping magazine. The article is written by a mom who lost her 18 month old due to medical errors. Mainly miscommunication. Sometimes, while in the hospital, I have caught myself saying to my very attentive husband, "They are medical professionals, honey, they know what they are doing." Well, yeah, probably. BUT mistakes happen. We never take our eyes off of what Zoe's nurses and docs do while she is in. Of course, we can't see what goes on in surgeries. We actually have a 'reputation' on the cf floor....as the parents who are "very meticulous about their daughter's care". Oh well. Anyways, for your info....her site is josieking.org
Well, little Ms. Zoe is sick. She is having to miss her ballet class tonight, poor thing. Please keep her in your thoughts and prayers that she can fight this on her own, she JUST finished a month of Bactrim last week. Thank you, Jada
Well, today was a melancholy kind of day.....missing my company..... After breakfast, treatments, school, the girls and I headed out to lay by the pool, swim a bit, just RELAX.:sun; It was a beautiful day. Around 91, sunny, blue skies. Perfect. BUT....I missed my girlies. Being an adult woman, hanging with kiddos all the time, really makes you appreciate the times when there is another adult woman around to talk to, drink coffee(and wine;)) with.
Anyways, updates around here are...... Caleb was home last weekend for his first pass from the Youth Challenge Academy. Oh, did I miss him. He has totally thrived in the Army environment though!:D He looks terrific! Hair all shaved, had gained 10 lbs. of muscle weight, and seems to have grown in maturity years!!! He will be back the 3rd weekend in October.
Austin is doing awesome in public high school, got his progress report today. He had a 97, 97, 95 and an 83. Not too bad.:) He also joined the wrestling team and seems to love it so far!
Alex has been sick for a few days, started out with a sore throat, stuffy nose, then headache, then cough, now the sore throat is better, just a cough and headache. He is quarantined to his bedroom. We take him food, water, cold meds, etc....he sleeps and watches movies.:( I think he is on the upside....hope so anyways.
We had an emergency room visit last weekend with Zoe. Not CF related at all. Well, not exactly anyways.;) Zoe has an extreme fear of taking bandages off. Mainly due to PICC bandage changes. Sooo, being the parents that we are, have chosen the taking a band-aid off as a battle NOT to pick. So, we have always literally let her band-aids FALL off. Well, it finally bit us in the....you know what.....her band-aid was bright RED all around it, I took it off to find a horrible, red, indented(literally the exact shape of the band-aid) yucky area. It looked horribly infected to me. So off to the small local ER to see. Nope, just a band-aid reaction from having it on so long. Uggghh. Guess we learned our lesson there. Other than that, she finished her Bactrim tonight, 4 weeks solid. Her nose finally seems to be clear. She has her ENT appt. next week.
We also did interviews yesterday for the Children's Miracle Network Telethon that a local radio station was doing. Zoe actually talked on the radio! I was totally shocked that she talked! It was sooo cute, she said, "Hi Madison, Sydney and Alex, I love you!!!"
Sunday is our CFF Jacksonville Jaguars Tailgate function. We have been every year since Zoe's diagnosis. This year, Scott HAS to work:( so, just Zoe, one of the older boys, and myself will go. It is a terrific event, we love it!
Anyways, to the pics....they are of Caleb at his YCA, and of my flowers. This is the first year that I have such a wild variety of colors with my hibiscus's. Never have they had such variations. I love them! Enjoy!
Hope ya'll have a terrific weekend.... Take care of you and yours.....
My blog on the last few weeks isn’t going to be super long. I think I will touch on the highlights, leave the other details to my terrific friends that visited. Zoe, Sydney and I picked up Terri around noon on Thursday at the Jax. Airport. We headed home, stopping at Taco Bell for lunch. We relaxed around the pool that evening, sipping wine. We cooked blackened Mahi, baby red mashed potatoes w/ rosemary & garlic, and a salad. Then we played games! My son, Dalton, and his lovely wife, Donna were here now also. We had a very fun night! Next day, Terri, Dalton, Donna, Zoe and myself went to the airport to pickup Mel and Jazz. Everything went very smoothly for them, thank God! After all were settled in their bedrooms, kind of unpacked, we all relaxed. We had grilled cheeseburgers with all the sides. After 9 at night around my house is considered “adult” time….the humor, jokes and language all change a bit. It became the running thing that we couldn’t say “that” yet….it wasn’t after 9. My oldest daughter, Tara, and her bo, Cecil arrived also. Soooo….we had everyone here! 14 people!! Except for my 17 year old son, Caleb, who is away at Army camp. This first night of everyone together was hilarious. The laughter, games, and drinks flowed until WAAAYYYY too late. Somehow, my son made a comment to his wife that started a laughing episode that lasted for I swear an hour. Our faces, guts, and throats all hurt the next morning because we all had laughed so hard. Ok, guess I’ll have to tell you the comment…..they have nicknamed their small poodle ‘the bush’, because she is so fluffy. Well, she was sitting in my son’s lap, under the table, he looked at his wife, Donna, and said, looking down at his lap, “How do you like my bush??” Tara heard this and about died…..she ???? him about it, then it became known to the whole group at the table about the “bush”. I swear, I have never laughed so much. I don’t think anyone else had either. Much coffee was needed the next morning. Thank goodness, everyone slept in. Saturday was a day by the pool, cooking alfredo for dinner, then playing another game at night again. Sunday was bowling for all! That was quite fun also! We had to have 3 lanes. Poor Terri, for some reason, her ball kept getting stuck in the back…she was always standing at the ball holder…waiting for her ball!!! It was a blast though! Then we headed to our little Mexican rest. For dinner….all 14 of us! It was awesome company, food and margarita’s! Home to get kiddo down……then one more night of board games! Whew! It was so much fun….but I do believe we all were getting tired! Monday we took Terri to the airport to say our goodbyes. We sure missed her after that….she brings a smile to my face constantly…love you Terri! Things settled down a bit after Terri, Dalton, Donna, Tara and Cecil all left on Tuesday. We got into a more relaxed, quieter routine. Mel and the kids had a Monopoly game set up for 3 days that they kept going back to. Mel and I sat outside every morning in the lounge chairs sipping French vanilla coffee, quietly chatting and enjoying the outdoors. Treatments were done in the mornings, Mel in her room, Zoe in hers. I gave Mel a book to read while she was here, considering we don’t have t.v…..it was called “The Smoke Jumper”…she loved it, finished it while here! The kids all got along wonderfully! Jazz, Madison and Alex bonded very easily. Jazz got to go out on the river in our canoe with Scott and Alex, she caught a shark! She had a terrific time! We went to the beach one day, just for a couple of hours. It was perfect. Mel stood in the water up to her shins, looked at me and said, “This is intoxicating.” Perfect. Just what I wanted, her to love it. We rented a golf cart in little ole downtown St. Marys, rode around in it for 4 hours. That was quite an experience. Strange, riding around in town with an open air vehicle, that makes no noise (it was battery operated). Fun!!! Friday night was date night….for Scott and his 2 ladies…Mel and myself! We introduced Mel to drinking Captain Morgan with ginger ale in gas station coffee cups…..while on our way into Jacksonville….then we introduced her to a true southern tradition….HOT NOW doughnuts at Krispy Kreme! Headed to one of my favorite, cheap things to do on a date……the card section at a large book store. We stood there for about an hour, reading, laughing, singing, you name it….I think Books A Million was very happy when we finally left! We then went to Bonefish Grill, the rest. That supports CFF all the time, everyone there loves Zoe, they treat us like royalty. There was a hour wait when we got there, but they seat us right away! And they almost never let us pay our bill….they are the sweetest, kindest people, we truly love them! I think the next few days, we relaxed, swam, laid in the sun, read books, cooked, talked a ton, what a vacation should be!!! The kids had built tents covering the game room , we dubbed it “tent city”. Alex, Madison, Sydney and Jazz slept in it for several nights! The last night before they left, Mel and I sat up, had a few glasses of wine, and finally had a good night of girl talk! The kids were playing truth or dare….coming out to us often with their ‘dare’….it was quite funny! This was a couple of weeks in my life that I will never forget. There was much laughter and tears. The day that Mel lost Ellie, was a hard day for us. I’m glad she was here and not alone. CF in all its reality. We cried for Ellie, for Mel, for Zoe, for all of you that have CF in your life....
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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