I can’t believe it has been almost a month since I have written. Time flies. I will try to recap things! My memory seems to be failing me a little more often than I’d like to admit. I think I will give you the recap by following the pictures in the slide show…. When Nana & Pa came through to visit in Oct., Pa captured this great picture of Nana with the girls! Also the tomato plants are the ones that Pa and Nana helped the kids buy and plant. Pa is the professional at tomato plants! Nana is doing well after her breast surgery to remove the cancerous lump. She will start radiation soon. Please continue to keep her in your prayers. Caleb has been home for several passes. He graduates from Youth Challenge Academy on Dec. 19th! He is enlisting in the National Guard this week. We are so proud of his accomplishments! We adopted 2 female kitties from a lady that does cat rescues. The girls LOVE them! Due to several members of our family being a little allergic, they are outdoor kitties. Our family took at one night get away to St. Augustine, Fl. We found an inexpensive hotel on the beach w/ a pool that had a huge waterslide! It was a much needed get away for just a single night. My sister lives in Palatka, which is about 45 minutes south of St. Augustine. We live about and hour north of St. Augustine. We hadn’t talked in a couple of months. Have you ever realized when God does something that was very much needed in your life? He did that day. While we were enjoying the waterslide at the pool, around the corner came my sister! They also were taking a one night getaway, out of the blue. What are the chances that we would be at the same hotel, the same night??? It was awesome! We got some much needed talking done….girl talk! Yay! The kids had a blast having their cousins to play with! We had several CFF events in the last few months…..Golf, Tango by Moonlight and Singles Greatest Night. There are pictures for all 3 events. We were volunteers at the golf event, attended the Tango event, and were the parents of an Ambassador for the Singles event. Our friends at the Singles event, Chris, Carrie and Keeley are all also parents of Ambassadors for Singles. There are only 4 Ambassadors that the teams of singles raise money for. I have talked about these singles before, they are amazing young single professionals that commit to raising at least $1500.00 each for CFF! There is always a competition to see which of the 4 teams will raise the most money. This year, Chris (team Cammie) decided that whomever won would get to flaunt HOT PINK HEELS. So, as you can see, my dear friend, Keeley won the honors, her daughter’s team, team Leila won!! It was a fantastic evening with friends! The Singles raised over $150,000.00!!!!!! We have a newly acquired used drum set in the middle of our house. It is LOUD! The kids love it though! Zoe is practicing to be like Emily from Rock CF!! We were blessed beyond our belief last week….. The school, First Coast Christian, has been doing our Great Strides Walk for team Zoe for a few years now. Which is a blessing in itself. But…this November they have what they call a month of love. For each week of Nov. they have a special person, family, organization, etc….they write letters to, raise money for, have a whole single day of prayer for that person, etc… Well, they picked our little Zoe for one of their weeks. To my total astonishment, as you can see in the picture, they wrote hundreds of letters to Zoe. We sat down one night and read them. We cried many tears during that reading session. The letters were from the youngest kids to the high schoolers. Straight from their hearts. The love and caring in their letters was unbelievable. One girl wrote how she was donating her paycheck, some gave icecream coupons, all gave their prayers and hope for Zoe’s future. I cry still when I think about these kids. The funds they collected could not have come at a more perfect time. You see, we were behind in our rent for almost the exact amount they gave us a check for. We have had a bunch of medical bills and medicine co-pays lately, so things were tight. I cried when I opened the envelope. Scott and I were just talking on the phone before I got to the school that day about how we were going to come up with the rent money. I am still in awe. We lost 2 more Cf’ers this month at cf.com . A young lady and an 18 month old little boy. We NEED a CURE. Our hearts break for the families……please keep them in your prayers. My dearest friend, Mel, has been in the hospital with a CF exasperation for 11 days now. She has had a rough time. She normally has to stay at least a month to get a good lung clean-up. I feel so helpless being so far away….. Please add her to your prayers….. As far as health goes around here…..Scott had a horrible cold that no one but him caught. But this week Caleb and Alex had a new cold. We are hoping and praying that Zoe doesn’t catch it. Zoe has been doing very well! We feel so happy that she has been so healthy for such a long stretch!! Well, if you held out this long, thank you! God bless you and yours……… Jada
Well, I have to say it has been a yucky week as far as things going on. We lost Lauren... My mother-in-law was diagnosed with breast cancer We lost Beth McCarthy....in her 30's...local here....waiting on transplant...son in 5th grade...... YUCK. First of all...my mother in law, has first stage breast cancer. The prognosis is very good. They will be doing a lumpectomy to remove the one spot of cancer. Then she will endure 5-6 weeks of 5 days a week radiation. I asked what the side affects of radiation are....tiredness and itchy skin. OK, NOT as bad as chemo, but still, yucky. I pray that all will go well and my mom-in-love will be fine..... Next... We went to an annual event for the CFF. We have gone to this event since Zoe's diagnosis in 2005. The speaker that night, in 10-05, was Beth McCarthy's husband. She was on oxygen, waiting on transplant. They had a small son at the time. This was our first experience hearing a speech. A CFF speech. It rocked our world. Not that our world wasn't already rocked by Zoe's diagnosis earlier that year, but to hear a man talk about CF....we had never heard a CF speech. We took many quotes from Mr. McCarthy's speech that night and have used them ever since..... He said" Cf has NO vacation....no break from treatments, no break from any of it, it never let's go., ever." Also...."CF is a MONSTER of a disease." He was awesome that night, talking about his wife, the mother to their young son. Saturday night at our event, the speaker, a man we respect, Mr.Roger, gave his speech. About his 40 year old daugher, Claire, with Cf. How she was doing ok. How he lost her brother some 20 years earlier to CF. Then he talked about local people that lost their battle.....Grant....Jessica....and then the ones that were fighting at this very moment for their life, Beth, waiting at Mayo for her lungs, her son and husband fighting along her side.... About a half hour after the speech, the ladies from CFF received a phone call saying that Beth had lost her battle with CF. The ladies from the CFF office were devastated. They were crying. We were crying. Hard to believe that Roger had just talked about her in his speech. I have met her, several times, my son, Dalton, has met her. She was an amazing, fighting little woman. So sad. We all raised our glasses, said,, "to Beth"...it was amazing....but surreal.....for all that to happen in one night at a CFF event. For a CF death to occur at an actual CFF fundraising event....wow....did God plan this?? Probably not. But....you could have heard a pin drop in the room while Claudia told everyone about Beth losing her battle with CF. Don't you know that everyone that left that event that night realized that CF is REAL, fing REAL, that we are losing people...... Soooo...it was a rough week news wise. We do have one more CFF event the 20th. Team Zoe for the Singles!!!! yeah!!!! Hopefully we will receive no bad news.... 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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