Three weeks after our Micro Preemie (25w4d @ 1lb 12oz) was born we were told that his new born screen came back positive for CF. My husband and I had no idea that it ran in our families! Not only did we spend the first 139 days of his life in the NNICU @ MUSC we met his CF team and learned what we needed to do to keep Cole healthy and safe.
Cole is now 6yrs old… let us tell you – he is keeping us busy! He started kindergarten this school year. Over the last year Cole has been playing soccer, taking gymnastic classes and swim lessons. Staying active is very important for those who have CF to help keep their lungs strong and healthy. When he is not busy with all his extra curricular activities he exploring the great outdoors with his Dad and playing with his MASSIVE car collection. Cole is also working very hard on learning how to eat healthy meals and proper portion amounts. The combination of his prematurity and CF has been challenging for Cole on eating enough food to maintain a healthy weight for proper lung function.
To keep Cole healthy we have a daily routine of medications, chest therapy, overnight g-tube feeding and a bimonthly feed clinic at MUSC. We are reminded daily of the importance of keeping up with his medical routine and we will fight every day to ensure that our miracle baby will live a long, healthy, happy lifestyle!
Help us find a cure so Cole and all those who battle CF can have that possibility. Thank you for your support.