Monday, November 5, 2018

Barbeque And Better Days

We've been pretty fortunate when it comes to doctor visits with Grace on our journey with INAD. Grace has been remarkably healthy despite this terrible disease, with just one one-day hospital stay in the books so far. We still see Dr. Ishmael at Litchfield Family Practice if Grace is seriously under the weather, but as far as specialists like orthopedics or ophthalmology, usually a routine annual visit is enough.

We had one of those annual visits on Monday as we made our way to St. Louis Children's Hospital. These trips are more of a necessity than a fun road trip, but we've done our best to make the visits as enjoyable as possible, usually adding in a trip to the zoo or a fun place to eat either before or after.

We weren't sure if that was going to be possible this time around as we were meeting a new neurologist at 11 a.m. and set up a meeting with Dr. Kotzbauer at 2 p.m. to catch up and talk about his work in INAD research. Three hours may seem like a long time, but last year they were running an hour behind at neuro so we had in our minds that lunch at the hospital cafeteria might be in the cards.

Grace was all smiles when we had lunch at Pappy's.
To be completely honest, neurology appointments have been a mixed bag for us. Some have been really good and productive. Some have not. We will leave it at that. That changed today as we had one of our best appointments period, and we're not saying that just because we told her about our blog.

Dr. Griffiths listened to us, wanted to know about Grace and provided us with a lot of information about things we had been wondering about. We even had some of the hard conversations about the future, a topic that has left us less than thrilled in previous appointments. Dr. Griffiths' compassion and the fact that she listened to us made all the difference in the world and we left Children's today with smiles on our faces.

Charley was just as excited as her dad about lunch!
We also left at 11:45, meaning that the world was our oyster in terms of lunch options. Normally on our trips to St. Louis, we go for a familiar name, literally. Grace Meat+3 has become one of our favorite places in the world, because of its food, because of its atmosphere and because of its amazing people. Unfortunately, it's closed on Monday and Tuesday, so Monday doctor appointments force us to look elsewhere.

On the bright side, one of the country's best barbecue restaurants is just a few blocks from the hospital so Pappy's Smokehouse has been our regular Monday post-appointment haunt. Grace was given a little pig on our first visit to Pappy's and Charley had her first real food there after another appointment. I have an awesome picture of her sucking the barbecue sauce off one of the rib bones.

As always, the food was excellent and the staff was super nice. Despite it being straight up noon, no one rushed us away as Mary fed Grace, which takes a little over an hour under ideal conditions. There's a level of comfort at Pappy's that is similar to what we love about Grace Meat+3. You see people of all walks of life there, all coming together to enjoy the fruits of someone's brilliant labor.

Charley loves making new friends!
After lunch we visited with Dr. Kotzbauer at his office, dodging raindrops to get from the car to his office building at the Washington University School of Medicine. The work that he is doing with gene therapy and enzyme replacement therapy is jaw dropping. Progress is never as fast as he, or we, would hope, but we know that the work he is doing now has potential to be very important down the road. It's always fun to catch up with him, tell him about what Grace has been doing and visit with members of his team. We are extremely fortunate that he works in St. Louis and is so eager to take time to talk with us.

As I said earlier, these trips could be a chore. We'd much rather be hanging out at home or doing something a little more fun with the girls, but as we've found out on our Grace Filled Journey, life is what you make of it. Ultimately, when all is said and done, we won't remember the waiting rooms and long drives. But we will remember the compassion of those caring for Grace and the good times that we get to have as a family.


No comments:

Post a Comment