Greenville, SC. I can’t say I ever considered Greenville a place to visit, but now it feels like we were always destined to.
Once we wrapped our heads around our new conditions and situation with HG, we started researching and planning. Joining Facebook groups of other parents, any and all resources we could find, we started digging up. (“We” in this scenario is my wife, as there seem to be more AMC-related groups geared towards Moms vs Dads.) In that research, a few places kept being mentioned with other parents. Initially, places like the Shriners in Philadelphia and Greenville were mentioned, along with the Paley Institute in Florida. When it came to the more successful stories and best experiences, a strong common thread began emerging: Greenville Shriners and Paley.
During our first week at home after the week spent in the NICU, we had that first visit with our local pediatrician. We live in a small town, so my wife and I both knew our pediatrician through family and the fact my wife and she were in high school together. During the initial exam, we started talking to her about the research we had already performed and the plans we had. When mentioning Greenville, our pediatrician perked up and casually mentioned how she had her residency in Greenville. She didn’t know the doctors at Shriners personally, but knew of them, knew the area, and she’d reach out to the hospital for us and get us scheduled.
A few days later, we have an appointment for the end of April. We were thrilled. Before HG would be 2 months old, we already had him set to be seen at one place we wanted him to go to. We continued going to the Lexington Shriners during this, as we knew the serial castings they were doing would be a similar process that we’d see anywhere. We wanted to go to Greenville because they were known for tackling and treating the entire body at once. They had a team of specialists that were there to treat AMC. We felt we were on the path. It had all worked out so well.
A few days later, we go from the fast lane to the express lane, as we get a call from the Greenville Shriners, seeing if we could come down sooner than our initial appointment. The attending doctor had already looked at his file and didn’t want to wait to see him. The sooner the better. She said that the first 3 months of life were the “golden window” regarding where he could be at the end of treatment.
That call came on a Tuesday. On Thursday evening, we took the 5-hour drive to Greenville for our Friday morning appointment. Nearly 4 weeks earlier than originally scheduled!
So here I am, sitting in the Greenville Shriner’s parking garage. Because of COVID regulations, only one parent could go up, so of course, I let my wife take HG up. Thankfully, she could FaceTime me during the initial exam on HG, which involved 5 different doctors! The primary doctor, Dr. Hyer, seemed excited, not only by the prospects of where HG could get in his treatment but by the process altogether. She felt like she was invested in our case, in our son. Even though FaceTime, I felt more genuineness from her than from anyone in Lexington. Sitting here exhausted from a late-night trip that was compounded by anxiety (on top of HG barely sleeping in the hotel room) I feel relieved. I have not an ounce of doubt that we made the right call on this. Yes, weekly drives down here are going to exhaust me, I have no doubt. Once we get into a rhythm with things, we’ll probably hang around, check the place out and not always rush back home. Thankfully, we can set our appointments for Fridays, so I won’t have much in the way of a work conflict.
Sitting here, writing this, waiting for my wife and son to come back down to the car, I am more confident and more energized for the future than I have been in the last few weeks. With all the scary things that have been going on, with questioning every action, purpose, motivation, or reasoning that we’ve been met with since HG’s birth, it’s nice to have something solid. Something strong.
Greenville feels like the foundation that we can build from. It’s good to be in Greenville.
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