Update on Ollie: We were able to get Oliver’s second opinion back from Boston last week! They had a lot of wonderful information about his malformation, a lot of it Ethan and I didn’t know. One thing they did mention was an option for surgery for Ollie. One of the radiologists who looked at Ollie’s images was able to see a fatty portion of his cheek that could be removed. This was new to Ethan and I and we are very much interested in hearing more about it. That being said…… we will be making our first trip out to Boston in October! He will not be going for surgery at this time, but for a consultation will his team of doctors. We shouldn’t be gone for more than a few days but it will be wonderful to meet the doctors on his care team as well as get more acquainted with Boston Children’s Hospital.
Now that we know that Boston is an option for Ollie, I have started to gather everything that we need. At first it didn’t look like our insurance would be covering anything related to Boston but I have been working with a woman from Helen Devos who is taking us through the process of authorizations. This takes a few weeks for them to process all the paperwork and to get back with us. But we are hoping that insurance will be able to cover part of the cost for his appointments.
Through all of this process we haven’t really spoken with Ollie about it much, not knowing if we would be going or not. But yesterday we were in the car and I had just
gotten off of the phone with our contact in Boston, they confirmed we had an appointment for October. As I laughed and rejoiced, Ollie couldn’t help but ask why I was so excited. I quickly told him that we had found a doctor in Boston that was going to help him with his cheek (he calls it his “big cheeky”). So the whole way to Rustic Corner he sang “we are going to Boston for my birthday to help my big cheeky”! The whole day he could not contain his excitement as he told everyone he saw.
Ollie knows that he is different but he doesn’t let that dim his sunshine. I have never met a kid so joyful and full of life. Every experience is done with gusto and much laughter. So needless to say, I am so excited to start this adventure with Ethan and Ollie (Declan will be staying home for our first visit)! Keep praying insurance authorizations and lodging options for us. I will keep you all updated! Boston Bound 2018!