Monday, February 25, 2019

Appointments and Adventures

Auguste Rodin said, "nothing is a waste of time if you use the experience wisely."

Today, our adventures took us to St. Louis Children's Hospital where Grace had an appointment with her neurologist. Over the winter, we had noticed Grace had been having some seizure-like activity, and we wanted to get it checked out.  We just got a new neurologist last November, and we really liked her. But she was out on maternity leave until recently, so today was the day we got together.

As part of the clinical trial, Grace had her first EEG done, and it showed some baseline seizure activity. Grace's regular doctor suggested we start on a low dose of seizure medicine until we saw her neurologist, as a precaution for aspiration.

I have always loved this butterfly at Children's Hospital. Just reminds me of hope.
At the appointment today, her neurologist suggested we continue the medication plan, and it gave us a chance to talk to her about the clinical trial. We feel so lucky to have her to bounce ideas off of, and she really understands the way we choose to help Grace live each and every day to the fullest.

And because we like to make the most of our trips to St. Louis, we usually plan for something fun. Sometimes, we go to the St. Louis Zoo or the Magic House. Other times, we stop by to see Dr. Kotzbauer for an INAD research update or Dr. Omurtag to show off how much Charlotte has grown!

But today, was an extra special visit. Our friend Caleb is currently at the Siteman Cancer Center battling osteosarcoma, and we had a chance to stop by and visit with he and his awesome wife, Bethany, who works with us at the paper.  It was such a good time chatting and laughing, and we continue to pray for a miracle as Caleb continues his battle against cancer.

Delicious lunch at Pappy's Smokehouse.
Then, we stopped at one of our favorite haunts for lunch. Although Grace Meat + Three is always one of our favorite stops, it's closed on Mondays. So, we picked Pappy's Smokehouse, and I got my usual BBQ Spud (with enough left over for lunch tomorrow). Everyone there is always so friendly and helpful, and there's plenty of room to feed Grace. 

So, while doctor's appointments can sometimes be a drag or just one more thing to do. We always try to make the most of our time together on this Grace-Filled Journey!


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