May 5, 2017

Recently we took Reagan to a new neurologist in Columbus, OH, at Nationwide Children’s Hospital. The neurologist specializes in pediatric movement disorders and was recommended to us by Reagan’s first neurologist, who we absolutely loved and have missed terribly.

It was a big deal to go to Columbus. We had to fly AND connect in Atlanta, which was causing me a ton of anxiety. I was worried about what going through security would be like with her medicines and formula – and what it’s like – is a guaranteed full body pat down of either Rob or me. Her meds are all liquid, all above the max amount you’re allowed to have, and her formula caused alarms to go off, totally comforting that she drinks it, but TSA did not approve it and it had to go through additional testing.  We made it through though, and connecting in Atlanta, while adventurous, was a success.

Rob and I ubere’d for the first time (I know we just stepped in to 2010), it was awesome. We stayed in the Ronald McDonald House (RMH) and evidently the Columbus location is the biggest RMH in the country. That place is a GOD send when your primary purpose is Dr. visits, surgeries, etc. Being able to cook for Reagan, and have meals provided for us, allowed us to focus on the task at hand, which is exactly what we needed, and what all families need who are treading through challenging medical issues with their children. Plus meeting and talking with other families who “get it” is really very comforting.

Reagan hanging with her new baby doll.

Reagan was a fan of Ronald McDonald. She would hop up and give him a hug every time.

Playground on site of RMH.

We flew in Monday, and Tuesday we grabbed one of the many wagons in front of the RMH and strolled Reagan and her Tupperware of medications across the street to the hospital for our appt.

The hospital was massive and was comprised of multiple connecting buildings that took up quite a few large city blocks. Just to give you an idea of the scope of the hospital, there are THIRTY pediatric neurologists on staff, compared to here in Orlando, Nemours and Arnold Palmer Hopsital probably have a combined 8-10.

This photo doesn’t do the hospital grounds justice, it’s about five city blocks with parks mixed in between the buildings.

And guys, this neurologist…he spent an hour and a half with us. He clearly planned to meet with us for a while and was grinning ear to ear upon meeting us. He kept saying how excited he was to have her and us in Columbus. He wanted to hear everything from the beginning and took copious notes and a video of Reagan walking, and of her answering questions we asked.  Rob and I joked that Dr.’s break out the video camera to take patient notes when they can’t believe what they’re looking at. I again asked, as I do of any neurologist who can read Reagan’s MRI: “her entire basal ganglia was damaged, right? I mean, I’ve been told that for three years, you also agree?” He said “oh most definitely yes”, and that she was truly a miracle, that she would never be this far along if not for us, and God. He continually lit up watching her and marveled at her progress as we chatted like we had been friends for a long time.

Our intention in going to this Dr. was to get a long term plan for Reagan. He was really delicate in managing our expectations saying that while Reagan has seen remarkable progress, there isn’t a “medical fix” to her issues. She has a lot of things to overcome, the brain damage is extensive, which we know, her movement disorder will be a life long challenge, but the Dr. and our family are forging a path together to help better Reagan’s life. Our specific plan currently, is to wean Reagan off one of of her medications. She’s on a powerful dose, and in doing the math, if we see no complications or hiccups in weaning her off, it will take a year and a half. The Dr. felt all her meds were the right ones given the history and her progress, he wouldn’t have done it different, but after three years and the progress Reagan’s displayed, we were all in agreement to start the process of weaning on one particular medication.

So that’s the latest update. We are really excited for what Reagan’s future holds and how this Dr. is now part of Reagan’s team. I have to say, Columbus will certainly hold a special spot in our hearts…the trip was more than we could have hoped for. 

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