This year marks our fourth year of supporting the Cystic Fibrosis Foundation (CFF) and our fourth Great Strides event. 2022 has been a banner year for our almost four year old girl. She continues to love being a big sister to her little brother, Caleb (although we continue to work on gently hugging him and sharing her toys). She loves exploring the outdoors, playing in the park, and riding her scooter. When forced inside, she loves arts and crafts and putting stickers on inappropriate and surprising places in the house. Most of all, she is obsessed with Frozen and brings Queen Elsa energy with her wherever she goes. In addition:
• Audrey is officially a preschooler! She attends a wonderful preschool twice a week for a few hours. She loves her teachers, made new friends, and of course like any other kiddo starting in a new environment, has been exposed to quite a few new germs. The beginning of preschool was challenging because of her constant illness and there was a brief time there where hospitalization was on the table if she did not respond to antibiotics. Luckily she pulled through and was able to recover at home.
• Audrey had confirmed COVID for the first time this year. We suspect that she might have had COVID in early March 2020 and was hospitalized at that time. But because COVID was literally so new and emerging, the hospital didn’t test her for it. This time around, she was tired and had a fever for a few days, but not a cough. We just laid low and thankfully she rebounded very quickly!
• Audrey continues chest PT and quarterly CF clinic visits at Children’s Hospital. Her chest PT (vest and nebulizers) is surprisingly more difficult this past year. She cries and often resists and says “this is not my favorite”. We’ve been seeking balance between recognizing that this is a huge ask for a toddler and also getting her recommended treatments done to keep her healthy. Some days it’s easier said than done! Giving her as much control and choices surrounding the situation seems to help. And when that fails, candy also works as a great motivational tool!
• We’re still waiting on the miracle drug, Trikafta, to be approved by the FDA. You may remember that Trikafta was approved for adults the same day that Audrey was diagnosed with CF (October 21, 2019). However, it is not yet approved for children under the age of 6. The FDA has all the clinical information and data needed to make its decision. We are hopeful that Trikafta will be approved in spring 2023 and Audrey will be able to take it soon after approval. In the meantime, we’re preparing as much as we can. We’ve consulted with our insurance company to make sure the medication will be covered (it is extremely expensive, so we’re thankful we have good health insurance). We also have scheduled an eye exam for Audrey to ensure that she does not have any cataracts. In rare instances, Triakfta can cause cataracts so it will be helpful to have a baseline exam.
The Cystic Fibrosis Foundation (CFF) continues to be present in our lives both clinically and from many fun-raising opportunities. Just before open enrollment at the end of the year, we used CFF’s Compass to discuss Trikafta coverage and potential insurance changes. This resource is available to all people with CF and their families as navigate a myriad of challenges related to CF. Additionally, in June we helped the CF Foundation with their first Walgreens campaign where Audrey was the literal poster child! You can’t beat those gorgeous blue eyes and cute little face to get people to donate to CFF at the cash register. In November, we attended our first in-person CFF Gala at the Parker Vehicle Vault. We got to see some swanky cars, raise some good money for the Foundation, and meet some game changers for the local CF chapter. We know, without question, CFF will be present as Audrey grows and changes. We ask that you considering donating today so that CFF can continue its mission and make CF stand for Cure Found. Audrey is Worthey of a cure!
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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.
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