The biggest change since our Great Strides celebration last year is that Audrey is now a big sister! In October 2021, she welcomed her little brother, Caleb, into the world. Audrey loves being a big sister and takes her role seriously. She is very in tune to his needs and frequently informs us that he "needs milk" when he cries for any reason. It's been so much fun watching her blossom into this role and see the love she has for Caleb.
Other than her upgrade to big sister, here's some highlights about Audrey and her Cystic Fibrosis:
• Audrey continues to see her CF team at Children's Hospital every three months. During these half day appointments, she meets with providers from research, respiratory therapy, nutrition, physical therapy, pulmonology and sometimes social work/psychology. Despite the fact that we only see these wonderful people face-to-face once a quarter, they are always just one phone call away! With an infant at home, it's helpful and convenient to be able to call our team, and tell them that Audrey is sick (which she was in early September, Halloween, Thanksgiving and mid-December).
• Audrey continues her twice daily chest physical therapy (also known as the vest) treatment. We also learned in the course of several bouts of illness in the last quarter of the year that adding a nebulizer treatment once a day proactively keeps her healthy. It has no doubt gotten harder this part year to wrangle her for treatments 15 minutes a day, twice a day. We strive to give her as much control as possible over the situation, including if Caleb sits next to her, what she watches on TV, and if she buckles the straps to the vest or we do. Our CF Psychologist also reminded us that doing her vest is considered a "job" and one outside that of a normal toddler. We've started a small incentive program when she is able to do her vest without protest. It's amazing what promises of cookies can do for this girl.
• Audrey has become more aware of her Cystic Fibrosis this past year, and it's not a topic we shelter her from. We discuss it openly, honestly, and remind her that it's just a part of her life. She also has started to express feelings of anxiety before clinic visits. She feels better with verbal reassurance and a reminder that healthy people see doctors all the time! It doesn't hurt that we always get Chick-Fil-A afterwards!
This will be our third year of celebrating Great Strides and the first year that the Cystic Fibrosis Foundation has thrown the event. But just because the CF Foundation did not host the event the prior two years due to COVID precautions, does not mean that they were absent in our lives or in the CF community as a whole. They continue to be a relentless force in search of cure and making the disease manageable in the interim. From allocating funds to research an inhaled antibiotic for resistant lung infections to connecting people living with CF for social support to providing support post-lung transplant; the CF Foundation is present through it all. We hope that you'll allow the CF Foundation to continue to be present for us, for Audrey, and for the CF community by donating today. There’s no doubt Audrey is Worthey of a cure!