Hello. It has been a tough couple of months and very busy so I have not had a chance to write. At the end of March, Cody had an appointment with ENT. They did a bedside scope in the office to see if they could see anything that would be causing him to be choking and coughing every time he ate and why he wasn’t gaining any weight. They saw that Cody had a glottic web and this would explain why his cry was so hoarse sounding. On April 3 rd , we went back to Boston for an appointment with cardiology and for Cody to have a swallow study to see if anything else was going on. We saw the cardiologist and besides his poor weight gain, they were happy with what they saw. They said he sounded good, he looked good and it’s safe to wait a little while longer before they decide if he needs to have open heart surgery. This was a huge relief. We were all happy with that appointment and moved on to the swallow study, expecting good results. I began feeding Cody while they
My life-long battle with Dystonia