About a year ago Kim and I were made aware of the Michigan State University Longitudinal Patient-Centered Experience program. This is a program where first and second year medical students get to follow a patient with a chronic health condition and visit with this patient over the course of a year. We felt it was a good opportunity to share with future doctors the experience of children with special needs and their families, so we volunteered to be in the program. We were assigned a pair of students, Brendan and Terry, and they visited us every other month or so for the year. Each visit they were given a theme and questions by their instructors. As the year progressed we shared with them everything about what doctors did correctly, mistakes that they have made, how insurance had worked(and not worked), what many of our challenges and experiences with Aden were, etc. We wanted to make sure they had a clear picture of the murky unknown waters we sail through on a daily basis. 🙂 It was a unique experience to have them in the house, they were given the opportunity not only to see Aden, but see how he interacts with his siblings, how he took some time to get to know them, all the little quirks that go with the package.
We let them know when Kimberly was pregnant, which steered into conversations about Matthew, Gabriel, and Ethan.
We shared with them when things became more clear and that Alexandria was not well. We kept them in the loop and gave them the picture of our newest experience.
I am hopeful that we had a good impact, and that it helps them when a child with special needs ends up in their office/ER. They were fantastic and we learned a lot from them as well. Our year-long endeavor ended last December.
Today they came by to visit and meet Alexandria. It was a great visit and good to see them again.
All in all today was a great day. She stayed in the “normal” for a good part of the day and was warm for most of it as well. Kim has started calling me the “daddy paparazzi” because of the number of photos I take. 🙂