Our Princess, Reagan Elaine was born on January 9, 2016 weighing 7 lbs. 12 oz. She was a happy, healthy, beautiful baby girl. As the first week progressed Reagan wanted to eat constantly, yet continued to struggle to gain weight. We were going to the pediatrician on a daily basis for weight checks. On Thursday, January 21, 2016 we received a phone call from Dr. Austin (Reagan's pediatrician) with the results of her newborn screening. Reagan's screening had come back showing she was positive for Cystic Fibrosis.
The next step was to have a sweat test and chest x-ray performed at Brenner Children's Hospital to confirm the diagnosis. Due to an incoming snow storm we would have to wait until Monday, January 25 to have these tests. That Monday morning we braved the cold and ventured to Brenner's for these tests. The sweat chloride test and x-ray confirmed that Reagan has Cystic Fibrosis. After the results were presented to us by Dr. Hayes we sat and talked, cried, and listened to her and Nurse Kay give us a “crash course” in what Cystic Fibrosis is. It was a lot to take in that first day and we have learned so much more over the past two years through the team at Brenner’s, friends we made online, and the Cystic Fibrosis Foundation website (https://www.cff.org).
We meet with the CF Team for regular visits every 3 months. The appointments can last upwards of 3 hours. During the visits we meet with any or all of the following: nurse, pulmonologist, nutritionist, respiratory therapist, physical therapist, case/social worker.
Reagan is also pancreatic insufficient, which means she takes Creon (special enzymes which help her body break down and absorb her food) before every snack or meal. She takes 1-2 with snacks and 3-4 with every meal. If you do the math Reagan takes aprox. 18 enzymes each day which is 126 each week, 504 each month and around 6,048 each year. It’s crazy to think about how much medicine she takes each year, however we are grateful for this medicine because it sustains her life. In addition to the enzymes she takes Prilosec to help with reflux as well as two vitamins (MVW Complete multivitamin and Vitamin D) along with Claritin for allergies and a probitotic.
To help keep her lungs healthy she uses the HilRom Vest airway clearance system twice a day for 30 minutes at a time. That comes out to 365 hours a year or 15 days a year just to stay healthy. If Reagan gets sick she has to increase to 4 treatments a day, which is a total of 2 hours a day! Prior to her vest treatment she receives 2 puffs of albuterol from her inhaler. This combination treatment helps open her airways and breaks up any mucus sitting in her lungs.
We are truly blessed that Reagan is doing so well. At her CF Visit on FEbruary 11, 2020 Reagan weighed 41 pounds 14.2 ounces putting her in the 90th percentile for weight, putting her above the goal set by the CF team, which is to stay above the 75th percentile. She was 3’5.3", putting her in the 79th percentile for height.
There are approximately 30,000 Americans living with cystic fibrosis. Real progress has been made in the search for a cure, but the lives of people with CF are still cut far too short. There still is no cure for this devastating disease. By walking in April, I am helping add tomorrows to the lives of people living with cystic fibrosis. Without the research being done by the CF Foundation, Reagan would not be doing as well as she is and have such hope for the future. The CF Foundation remains the only source of funding for research for Cystic Fibrosis – there is no federal funding.
This year, our family is participating in the local Great Strides walk on Saturday, April 25 at 9:00 am at Shaffner Park on Yorkshire Road in Winston Salem. We need your help to meet our fundraising goal. Thanks to our generous donors in 2019 our team raised nearly $6,000 Our team goal in 2020 is $6,000. Will you join us? Support us by making a donation to our Great Strides fundraising campaign today! Your monetary gift to the CF Foundation is 100% tax deductible. We also welcome you to join us at the walk on April 25, 2020!
Thank you for any and all support you can provide, Ben, Ryanne and Reagan Wallace
Attention Business Owners: You can have your business advertised at the CF Walk in Winston Salem for as little as a $100 donation! Contact Ben or Ryanne for more info.
Foundation-Sponsored Indoor and Outdoor Events and Gatherings
The Foundation is closely following the evolving coronavirus outbreak. We will continue to monitor coronavirus guidance from the Centers for Disease Control and Prevention and assess whether we need to change any scheduled events.
To reduce the risk of getting and spreading germs at CF Foundation-sponsored events, we ask that everyone follow basic best practices by regularly cleaning your hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow, and maintaining a safe 6-foot distance from anyone with a cold or infection. Medical evidence shows that germs may spread among people with CF through direct and indirect contact, as well as through droplets that travel short distances when a person coughs or sneezes. These germs can lead to worsening symptoms and speed decline in lung function.
To further help reduce the risk of cross-infection, the Foundation's attendance policy recommends inviting only one person with CF to attend the indoor portion of a Foundation-sponsored event at a specific time. For the outdoor portion, the Foundation recommends that all people with CF maintain a safe 6-foot distance from each other at all times.