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.
It has been a great year for Cole! He is 6 years old and a 1st grader at Drayton Hall Elementary School here in West Ashley. He has remained very healthy throughout the year through daily medications, chest therapy and speech therapy. We did introduce a new CF drug this fall, Symdeko, which will help maintain Coles’ lung function and help keep his lungs healthy through infections.
We had a busy summer and were able to travel and visit family and friends. The highlight of the summer was going on a 6 day, 5 night camping trip in the North Carolina National Forest near Carolina Hemlocks. The kids had a blast and we were able to keep up with all of Coles’ medical needs, despite the fact, we did not have water or electricity on our camp site! We hiked every day, visited beautiful waterfalls and swam in the river.
This fall he played soccer for the first time, which he informed us he loved the practices A LOT more than the game itself! He was always very concerned about how the other players were feeling and if they were OK! We also joined the local Boy Scout pack this fall and Cole will be going on his first camp out with the cub scouts in a couple of weeks. Randy will be joining him and he is looking forward to camping out with other people besides his family!
Thank you again for supporting Cole and our family through this journey. Without your love and support this journey would be more difficult. We look forward to seeing you all for our next event!