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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A Stately Experience

It was certainly a stately occasion that we found ourselves in Bloomington this weekend for the IHSA girls state basketball tournament. 

Grace sort of became an unofficial Lady Hiltopper in January 2015, when then seniors Keriann Cooper, Kelsey Traylor and Jaicie Halleman invited our family to their senior night game. That night, each of the basketball players wore purple gracelets and Grace was introduced as part of the team before the start of the game.

Lunch at D'Arcy's Pub to start our adventure.

Ever since then, the Lady Toppers have kind of adopted Grace, inviting her to games, and making her feel very special. Two former Lady Toppers (Carly Cameron and Lindsey Storm) still keep in touch with us and meet us for ice cream when they are home from school.

Resting up for the big game.

So, it seemed only fitting that we follow this year's Lady Toppers to the state tournament in Bloomington. We only made it to a couple of regular season game this year, and Grace was sick with pneumonia in January, so we didn't get to take her to any of the postseason games. But thanks to live tweets from Kyle and Tim Mize on WSMI Radio, we were able to keep up with their winning ways.

Hanging out at the semi-final state game.

Kyle took this photo from the floor.

As part of the clinical trial, Kyle and I were taking Grace to New Jersey when the Lady Toppers were winning their supersectional game and punching their ticket to state. We watched the first half of the game via Facebook live as we were sitting on the airplane waiting for the plane to take off. We had to wait until we landed to find out that they won! 

We flew back home the next day, and Kyle asked if the girls and I would accompany him to the state tourney. And we decided a family adventure was exactly what we needed!

Swimming at the hotel.

Grace has physical therapy in Springfield on Friday mornings, which is already halfway to Bloomington. So, we loaded up the van and took off. After a great session of physical therapy, we started our family adventure with lunch at D'Arcy's Pub for horseshoes. Because after all, all great adventures start with good food!

Hanging out at the Discovery Children's Museum.

Kyle booked us another fabulous room at the Hampton Inn in Bloomington, and we checked in so I could feed Grace and we let Charley run around the room for a bit. She sort of gets spoiled having Netflix at home and the chance to watch her favorite programs whenever she wants. She didn't quite understand why we couldn't just put Mickey on whenever she wanted. But it was cute to watch her.

But before long, it was time to head to Redbird Arena to cheer for our favorite Lady Toppers. When we arrived, it was amazing to see the sea of orange and all the community members who came to watch. We found some accessible seats, which provided a place for Grace's chair, as well as space for Charley to have a little room to play. Some other Hillsboro fans joined us, and we had a great time visiting and watching the game. Although the Lady Toppers started off strong and led at halftime, they came up a little short in the end. But it was such a great game, and we were so proud of them!

Just the girls hanging out at the third place state game!

Good games call for good food, so we ordered pizza to take back to the hotel, and Charley kept repeating pizza all the way on the drive back.

Even though Charley woke up bright and early, we took advantage of the opportunity to take the girls swimming and even to the Discovery Children's Museum before returning to Redbird Arena that night.

Dinner at the world-famous Portillo's before heading home.

It was another fun night of popcorn, M&Ms and basketball. And even though this game didn't go the Lady Toppers' way either, they showed a lot of heart, and we are so proud of how far they made it. They were so much fun to watch this season and they finished fourth in state! We even enjoyed dinner at Portillo's before heading for home.

To cap off our stately weekend, we took the girls to a welcome home rally for the Lady Toppers Sunday afternoon at the school. We loved seeing the community come together for the team, and were especially touched that senior Sheridan Lyerla thanked Kyle for bringing Grace to as many games as he could and called her a "spark plug" for the team. The five seniors even took time to pose with Grace for a photo and let her wear one of their state medals. I think Grace's smile showed how all of us were feeling.

Grace was all smiles to meet the senior Lady Toppers at the game!

We know there's a pretty good chance that Grace will probably never actually suit up for the Lady Toppers. If she got her "grace" from Kyle or I, there was a pretty good chance she wouldn't be very athletic even without a diagnosis of INAD. Even if she can't be an official part of the team someday, it's been pretty special to see the way the teams have embraced her and shared in our Grace-Filled Journey. After all, orange and black is where it's at . . . 

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Remembering Landon

This week, the world lost another beautiful soul to the devastating disease of INAD.

Landon Caputo passed away snuggling in the arms of his mother this week when he was just six years old. And while we know Landon is at peace now, we can't help but grieve for his passing.

Grace sent Landon a St. Louis Cardinals Mickey Mouse for his collection.

Although we never got to meet Landon, we got to know him through his mom's Facebook posts. He was a little boy who loved Mickey Mouse, smiling and being with his family, including his big sister, Issy. He was so brave and courageous, just like all the kids who battle INAD. They never complain about the things life has taken from them. Instead, they smile and remind all of us to live each day to the fullest.

Since Landon is just a little younger than Grace, he was diagnosed with INAD around the same time. And we got to know his parents through a support group on Facebook. Even though we have never met in person, I consider Landon's mom, Ashley a close friend. There's just something about sharing a life experience like this that bonds people together, whether or not they ever have the chance to meet in person.

Landon sent Grace some Mickey pajamas for her birthday one year!

Since Grace and Landon were about the same age, they have sort of gone through the progression of INAD at the same time. That has given Ashley and I a chance to bounce ideas off each other, check in on one another and share when things get hard.

Ashley and I had been texting last week. She was looking in on Grace, asking us about how the trial was going. She shared that Landon had been having a rough time, and that they were spending his final few days together as a family. 

Grace also sent Landon a pirate Mickey Mouse for his collection.

We are heartbroken for Landon's family. Instead of learning to write his name and read books in kindergarten, Landon bravely fought against a ravishing disease every day of his life. Strong and courageous, Landon's life is reminder to all of us that life is always to be celebrated. 

And we will never stop trying to #BeatINAD for Landon, Grace and all the brave kids who fight against INAD with ever fiber of their being. We will continue to raise awareness and funding for research until one day no kid has to fight INAD anymore.

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