Before he was born, Liam was diagnosed with Cystic Fibrosis. Cystic Fibrosis substantially impairs normal respiratory and digestive functions making the simple acts of eating and breathing a challenge. We spent the first three weeks as a family in a hospital while Liam recovered from bowel surgery he had within the first 12 hours of life. When we were able to come home, we not only had to navigate the world of being first time parents, but we had to understand what it meant to be parents of a baby with CF. Our days are filled with doctor visits, breathing treatments, chest physical therapy, and medications to help Liam. Due to the support of family, friends, and the local CF community, Liam continues to grow into a happy and healthy little boy!
A typical day for Liam involves many medications and treatments. Here are some of the things he has to do.
1. Liam needs to take six enzyme pills every time he eats. On average Liam eats 3 meals a day, plus 3 high calorie snacks. That is 36 pills a day!
2. Liam’s diet consists of high calorie, high fat, and high salt content in order to maintain an average body weight. He was on special formula for the first year of life and now needs 3-4, 8 oz. bottles of Pediasure everyday. He is now in the 75th percentile for weight! Go Liam!
3. Liam takes 1ml. of Pepcid twice a day, as well as, 2.5ml. of Nexium once a day. These medicines help to fight reflux and aid in the absorption of nutrients from food.
4. Liam takes 2ml. of special vitamins everyday to make sure he is able to absorb the needed vitamins correctly.
5. Liam has three different breathing (nebulizer) treatments. His morning routine consists of Xopenex, which opens up his airways, Pulmozyme which helps to loosen and thin the mucus in his lungs, and Tobramyacin which treats a bacteria infection in his lungs. At night he repeats the Xopenex and Tobramyacin. Xopenex and Pulmozyme each take 10-15 minutes, while the Tobramyacin takes 20 minutes!
6. Liam also does chest physical therapy with something called “The Vest”. It is a machine that hooks to a vest with hoses. The hoses fill with air, thereby filling the vest with air as well. The vest then pulsates and shakes Liam to loosen the mucus from his lungs. This treatment is done twice a day for 20 minutes each time.
In addition to Liam’s everyday routine, we also bring him to see a pulmonologist, gastroenterologist and respiratory therapist. These visits started out bi-weekly, moved to monthly and have very slowly worked their way to once every two months (these do not include his regular well checks at the local pediatrician). Our goal is to make the visits quarterly; however, it all depends on Liam’s progress. During these visits Liam is examined closely. Cultures are taken to test for bacteria that could be growing in his lungs and gut. Blood tests are done to measure his levels and chest x-rays are taken to monitor his lungs.
These reminders everyday are the reason that we take part in fundraising! We need to find a cure for this devastating disease so that our son can live a healthy life! Advances continue to be made in finding a cure, but your help is needed now, more than ever, to keep up the momentum of this life-saving research. And, although we have developed therapies that have made a significant difference in treating the symptoms of CF, it is not enough. For the first time in the CF Foundation's history, scientific opportunities are coming at a pace that is exceeding our ability to fund them.
Too many young lives depend on this vital research to let it go unfunded!
THIS IS IT! This is what we've been telling you about! I'm sitting here with VERY HAPPY tears streaming down my face! For the first time in history, there is a drug approved by the FDA that addresses the underlying cause of CF. While it does not treat Liam's mutation, it gives me HUGE HOPE that we can find another drug that will work for him! THIS IS WHAT YOUR DONATIONS DO!!! You are SAVING LIVES! If ever there was a time to donate, THIS IS IT!! BE PART OF HISTORY IN THE MAKING! Help my family hold on to this hope for the future.
