I knew the day would come, just really didn't think it was going to come so early. Yesterday, Zoe walked up to me, looked up at me with those big blue eyes and said "Mommy, do you have cf?" I stopped what I was doing. I looked down at her thinking, what do I say????? I said, "No, baby, mommy doesn't have cf." To which she replies, "Why not?" Wow. She isn't even 4 yet. This is harder than I thought it was going to be....the moment they notice they are different, the moment they realize they are the only one in the family with cf. I said, "I guess God wanted you to be extra special." She was good with that answer. She went about her normal 3 yr old play. I cried.
Today I found out about something wonderful. When I say wonderful, I mean WONDERFUL!! Everytime Zoe is in the hospital, Scott takes vacation or sick time, whatever he has available. When that time runs out, as it always does, it gets real rough. My very dear friend, Mel, who also happens to have cf, told me today about indemnities. I cried when she told me about this insurance. Essentially what it does is pay me money when Zoe is in the hospital, on home health care, for an out patient surgery procedure, for an emergency visit, and I.C.U. stays also. The pay is different for all of the above, but oh my gosh, what a blessing, what a relief. The best thing of all is, that since Zoe is so young, we can get a really great monthly rate, forever! The rate will never change, ever! I am going to let my cf social worker know about this, as well as every family I personally know that has cf in their lives. Thank you Melissa, I love you!
Zoe's cold seems to be better as far as her nose goes. She isn't sneezing constantly anymore. Today she had quite a few very mucousy coughing sessions. I really pray she can fight this on her own and not have to do antibiotics. It has only been 5 weeks since antibiotics and her tune-up. I really want at least that 3 months we had last tune-up, cough-free.
Today I have been thinking about my support system that I have with cf.com. I love my friends. I am grateful for them. Actually in all reality, I wouldn't know what to do without them. They relate, they love me, even in my quirky moments....
Last night Zoe started acting sick. Actually, to explain, Zoe hasn't caught many "colds". The last "cold" she had was probably about 2 years ago. Weird, I know. You see, when Zoe is sick, it is a lung bacterial infection. It takes us months and months of oral, inhaled and iv antibiotics to clear her up then. But, as far as the normal kid "colds" she just doesn't normally get them. Soooooo.....the big question now will be....will this "cold" turn into a lung issue???? I hope not. We are going to watch her for a few days and see what happens. Right now, it is an extremely stuffy nose, sneezing, watery eyes, occasional cough. MAYBE it will go away.... On another note, we met a wonderful gal tonight, talked to her about cf, the walk, etc....she told us that she and others will be on board to join our team, "Zoe for Life" for the Great Strides walk in April! It is always so wonderful to Scott and myself to meet people that seem to 'really' care. Thank you all for your love and support...without you we would be NO-Where. Have a great night! Scott and Jada....and of course, Zoe
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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