After being a waiting adoptive family for over two years, we finally received the call in April of 2020 that we were matched with our son! Before we received the call, we knew that he had Tracheoesophageal Fistula (TEF) and that he had the repair surgery a few days before we received his profile and that he was recovering well from the surgery. TEF is when the esophagus is not fully connected to the stomach. We were told he would be off the ventilator and oxygen when we would get to Florida to see him.
When we met Ezra for the first time we immediately fell in love with him! Little did we know how long of a medical journey we were about to face. Ezra ended up having a hard time getting off the ventilator, and we found out he had tracheomalacia where his trachea was too floppy to stay open on its own, and that it would need time to get stronger. We were told that a trach and ventilator would be the best option for him at this point.
My husband and I spent two months in Florida with Ezra until my husband had to return home for work. I stayed in Florida by myself with Ezra for another two months. I spent many hours trying to figure out how we were going to get Ezra home. We were told Ezra was not able to go home by vehicle for a few months, and the only way would be to do a medical flight. Insurance would not cover the flight as it was not a medical necessity, because both hospitals could provide the same level of care.
By God’s will, we raised enough money for the medical flight. We were now able to be an hour away from home instead of 24 hours away from home. Ezra ended up spending another five months at that hospital until he was discharged home, February of 2021. After being discharged from the NICU, we took Ezra to therapy at the hospital an hour away once a month.
It came to a point that we needed something closer and more frequent therapy for him. I asked others who they recommend for pediatric therapy and I was told by a few individuals, “Orange City Area Health System provides the best pediatric therapy!”
In April of 2021 Ezra started OT, PT, and Speech Therapy at Orange City Area Health System. When we met Libby (Occupational Therapist) and Audrey (Physical Therapist) for the first time, it was very overwhelming and stressful for Ezra. It took time for him to gain trust from others after being in the hospital for nine months of his life. They did a great job following his stress responses, and we were able to increase the therapy sessions slowly at the beginning to get him to a point where he tolerated a full session well.
Ezra has been working on oral motor skills in occupational therapy with Libby, and has been making great improvements each week. In physical therapy he has been working on tummy time (the trach and ventilator tubing make tummy time more difficult). He has also been working with physical therapy on sitting, standing, and using the lite rail to take steps.
Speech therapist Courtney has been working alongside us with Ezra’s speech generating device. While Ezra has the ventilator, he is unable to communicate verbally so this device helps him communicate with us.
We are so thankful for the skills each of these therapists have provided. Not only to our son, but how they listen and make sure we understand how to do the therapies at home and how they do it in such a loving and supportive way.
