Andrew is our little fighter. Although he may not look “sick”, there is so much that goes into keeping Andrew healthy. We do all of this daily and would do it times a million if it meant keeping this sweet boy healthy. From that very first day sitting at Norton Childrens Hospital getting the diagnosis, until now, we have learned so much but still feel like we have so much more to learn. I can remember sitting with the doctor at that first appointment as she went over the enzymes he would need before every feed. She explained they would be given on applesauce and I sat there thinking newborns can’t eat applesauce. Having gone through the newborn days with Jack, I also remember wondering how we would give a hungry, crying baby a spoonful of applesauce with meds on top in the middle of the night. It all seemed so daunting but somehow we managed. Our nightstands were covered in applesauce pouches, pill capsules, and baby spoons for months. Now it has become second nature to give him his enzymes before he eats. The early days also included manual CPT, this meant using a special tool to tap on Andrew in different areas of his chest and back. Some days it was easy and he fell asleep in our arms as we did it. Other days, he cried through the entire thing and we had to just fight through knowing it was important. The goal of CPT is to break up mucus so it does not settle in his lungs and cause infection. When he was big enough, he was able to begin using a vest for CPT. Andrew uses his vest twice a day for 20 minutes each session. When he is sick, this is increased to 4 times a day. He even takes it to daycare where he has an amazing nurse in his classroom who is a big part of his care team. We can breathe a little easier knowing he is in great hands while at daycare. As of today, he has spent 128 hours hooked to his vest, and he’s only had it since June…As much as we wish that time could be spent doing other things, we know how important it is to his health. We are so thankful for this technology as well as our ability to access it. Without insurance these machines cost close to $20,000. They are also something that is not always available to those with CF in other countries. We feel blessed it is a part of Andrews care plan. Andrew has his CF clinic every other month. During these appointments we meet with a dietician, a respiratory therapist, a pharmacist, a social worker, and of course his Pulmonology team of doctors. These appointments are always big days. This is when we learn if he is growing at the rate he needs to, if his lungs are clear, and overall if all of these steps we take everyday are working to keep him healthy. Each visit he also has a throat swab. We don’t get those results for about a week but this tells us if there is any bacteria in his lungs. This is always a long, stressful wait. We are lucky in that Andrew has been relatively healthy thus far. He has cultured different things through out the year but we have always been able to manage these with the use of different antibiotics and no hospitalizations. None of these pieces that are part of Andrews care plan would be possible without the research and trials that have been done for CF. We feel passionate about doing our part to raise money not only for Andrew, but so those born with CF in the future will have an even better outlook. All of these things we do on a daily basis for Andrew, will someday shift into being his responsibility. The feelings we have of CF being exhausting, and inconvenient, and unfair will soon be his feelings, which as a parent, is hard to come to terms with…until there is a cure. Because we joined the CF community during a pandemic, we have not been able to do a lot of in-person connecting and fundraising. We are excited the walk is in person this year. If you are in Louisville, join us on May 19 to walk! Below is the link to Team Andrew to join. If you feel called to donate, no amount is too small. We also plan to make/sell shirts for Team Andrew so I will post when we have that ready! It all goes towards finding a cure for our sweet Andrew and all of the other CF fighters.
Will you join us?
Great Strides is a fun event that provides a fantastic opportunity for family, friends, students, and colleagues to come together to make a difference in the lives of people with CF.
To participate, just click on the "Join our Team" button. From there, you can make a donation and start fundraising.
By joining our Great Strides team and making a donation, you will be part of a tenacious and passionate group of people committed to ending this disease. Together, let’s make CF stand for Cure Found!
IMPORTANT NOTE ON ATTENDANCE AT FOUNDATION EVENTS:
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 help minimize the risk of COVID-19, 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.)
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.
Please be advised certain localities and venues may require you to be fully vaccinated and show proof of vaccination. We will communicate these requirements in event communications.
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 are feeling ill or have been recently exposed to COVID-19.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, vendors, or others, have been fully vaccinated.