Penny was born April 2013 and seemed to be just as healthy as she could be. She lost 15ozs before we left the hospital, but no one was worried. She was really congested for a newborn and I had taken her to the pediatrican a few times in her short 3 weeks. I was told she just had small nasal passages and it wasn't anything to worry about. We got the newborn screening results during an appointment I had taken her to for congestion at 3 weeks old. Her NBS came back positive for Cystic Fibrosis.
My world was completely rocked. I sat in the doctor's office crying and trying to contain myself. How could my sweet newborn be sick?! All I knew of CF is that John had a cousin who passed away from it. I was terrified that my Penny Pie would soon meet the same fate. We were scheduled to take Penny in to Primary Children's Medical Center 2 days later for a sweat test to confirm diagnosis. We met with a genetic counselor to learn more about CF. Thankfully, John and my mom were there because I was pretty well in a daze and didn't retain much. I was nursing Penny when we got a call that night confirming her diagnosis. I held my sweet girl and cried and cried. We were seen at the PCMC CF Clinic the next morning and received all sorts of information and direction. Penny was started on pancreatic enzymes so she could start properly digesting her milk and began to thrive!
Penny was hospitalized once in July 2013 when she couldn't fight a cold and needed IV antibiotics. She is on 8 different medicines daily including nebulized medicines for her lungs. She also gets chest percussion therapy at least twice a day. She has been on antibiotics almost as much as she has been off of them and they've caused terrible problems, but they are necessary in the fight to keep her well. She has recently started sinus rinses and does them like a champ! There are people working everyday on new medicines to prolong her and other CF patients' lives. Any donation to help with our goal for a cure would be sincerely appreciated.
She is the sweetest most wonderful girl and we are so blessed to have her in our lives. She always has a smile and a high-five for everyone she meets and sometimes even a hug! She is an incredible big sister and is so loving. She has already been through so much and we pray daily for a cure. We hope you can help us get closer to that goal! We would love to have anyone who would like to, join us in our walk (you can virtually as well!) or donate if you are able. Thank you!!!
My dearest hope is that Penny will be able to live a long and healthy life. I am so grateful for the progress in research that has already been done and hope that CF will soon stand for " Cure Found".