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!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
Updated June 15, 2022. To reduce the risk of COVID-19 the Foundation is taking steps to host safe events for our community. Please be advised that events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
To minimize the risk of COVID-19 infection, we ask that attendees at CF Foundation events follow these steps:
Where mandated, practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household.
Face masks are encouraged and should be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should only attend outdoor CF Foundation events where they are able to distance and stay within their family group.) NOTE: For events hosted by the CF Foundation, masks will be made available on-site, when possible.
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, and by covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19.
For indoor events, it is CFF policy to invite only one person with CF to be in-person at the event at a time. For outdoor events, people with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and well-being of the CF community, we strongly encourage that participants be fully vaccinated and have received the CDC recommended booster shot when joining us in-person for the event.
Certain CF Foundation events may require vaccination to attend.
Participants are strongly encouraged to test within 24 hours prior of arrival at an event or meeting, or as close as possible to the time of departure (if traveling).
Please be advised certain events, localities, and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
For events where the CF Foundation requires full vaccination, meeting participants must be fully vaccinated against COVID-19 at least two weeks before the date on which you will first attend the meeting. Registration and attendance at such events may require agreement to health and safety protocols and/or COVID liability waivers.
We are counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID-19 and will not attend an event if you test positive, or have been recently exposed to COVID-19.
We cannot guarantee that all people present at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.