This weekend we headed to Indy for the Cystic Fibrosis Wine Opener. It was an amazing time and I was reminded again but how incredibly blessed we are to have such an amazing group of friends to support us. I am not sure how we would get through this without our family and friends.
I also had the privilege to meet a few fellow CF mommas and CF patients. I spoke to one gentleman who is 42 with CF and a woman who is 37 with CF and just had a double lung transplant. I, of course, had to pick thier brains. They both agreed that the best means of therapy is manual CPT and exercise! The gentleman also suggested cutting out milk that that really helped him a lot. However, at this point it doesnt seem to be affecting Ethan and its a major source of calories for him. They also told me to let him be a kid and let him run around outside and play in the dirt. As a parent of a CF child its so easy to want to put them in a bubble to protect them, but thats not the life a child should have.
At the wine opener we had amazing food and samplings of great wine. I even had a rhubarb wine which was very good! Thank you to our friends who support us and our cause