Flying, Baltimore, and Wishes
This past week, we traveled to Baltimore, MD, for James’s six-month Batten disease follow-up at Kennedy Krieger Institute (KKI). What made this trip especially big for us? It was James’s very first time flying and (as you can imagine) the excitement (and nervousness) was very real.
When planning our trip, we thought about taking the train, but decided that a 1.5-hour layover in D.C. wasn't the best, especially with James in tow. So, we opted to fly—a short flight, but a perfect intro to flying as we prepare for an even bigger trip to Texas at the end of May (more on that in a bit!).
We were most concerned about takeoff and ear popping, but we explained it all to James beforehand and Cory did an excellent job teaching James to drink during takeoff to help his ears adjust. It worked like a charm. James remained calm, but mostly thrilled during takeoff. In fact, once we landed, he didn’t want to get off the plane (granted, his fatigue and hunger played a small role in that as well). He kept saying he wanted more flying and more plane to which we responded with, “Well, we do have to head back home!”
We stayed at the Ronald McDonald House in Baltimore, and it was very different from our regular one in Chapel Hill! With the building completed and opened in 2019, everything felt fresh and new. The dining area and kitchen were huge and well organized, although there were fewer play spaces for James compared to Chapel Hill. When we stepped off the elevator to head to our room, we noticed the walls had brick around the doors as well as sconces (I believe that’s what they’re called?) on the side of the doors to make it feel homier. Our room had a unique layout with two little hallways leading to the beds, which made it feel more private and quiet—especially since the bathroom was right near the entrance and not directly in the room (a little thing, but one I really appreciated!).
The staff, as always, were incredible. On our last day, they even let us stay in our room past checkout so James could nap before it was time to head to the airport. It’s those small, kind gestures that mean so much.
As for our appointment at KKI—it went well! James’s physical therapist noticed improvements with his walking and navigating stairs, which was encouraging. We did bring up a new concern we’ve noticed—James’s eyes rolling back for a second or two, with his body going limp briefly (though not to the point that he falls). It’s happening a few times a day, so we’re currently working on getting a 24-hour EEG scheduled to investigate further. However, the doctors at KKI weren’t extremely concerned about it—they (as well as us) are interested to see what (if anything) is causing this to happen.
Now… about Texas!
We contacted Make-A-Wish a few months ago (I don’t think I’ve shared this yet here and apologies if I’m repeating myself), and started researching things he absolutely loves—like garbage trucks and trains. That led us to discover that the headquarters for BNSF (the big orange freight trains) is in the Fort Worth/Dallas area… and so is Peterbilt, the company that manufactures garbage trucks!
Since James’s speech is limited, we presented this wish idea to Make-A-Wish (it’s definitely not your everyday wish), and I’m thrilled to share that it’s happening! We’re flying out to Fort Worth/Dallas at the end of May to give James the experience of orange freight trains and garbage trucks!
We’re so excited—and beyond grateful—for the support we’ve received from our outstanding care team (I cannot express how grateful we are to the entire UNC Peds Neurology team, Duke Eye Center, KKI and BDSRA), Ronald McDonald House, and of course, all of you cheering James on.
Speaking of BDSRA, Cory and I will be heading to the annual family conference again this year, which will be held in Nebraska. I really can’t tell y’all enough just how much help and support we received last year when we attended for the first time. I was on a Zoom call with the foundation earlier this year where they asked us (the parents) if the conference should be held every year or every other year. I told them that as long as it’s financially feasible, it needs to be every year. The sense of connection and support we felt—being with other families who truly understand this journey—was something we didn’t know we needed until we experienced it. It made us feel like we’re not alone in this fight.
Thank you again for all of the love and support you give James and us. We truly feel it from the bottom of our hearts.
Much love from us!
P.S. - I figured out how to add pictures in my blogs hah!