Monday, April 8, 2019

A One-Month Update

It seems hard to believe that we have already passed the one-month check ins as part of the clinical trial last month.  Some days, it seems like it’s been so long since we have been to New Jersey, and other times, it feels like we just started the trial.


But one month has already come and gone. After the first 30 days, we switched from two tablets twice a day to one tablet three times a day. Grace can’t swallow tablets, so we pierce them and squirt the liquid into her mouth. And I’m happy to report only one injury when Kyle poked himself in the hand trying to get it open. We consider that a win. 

Also part of the clinical trial, we have to make a set of four two-minute videos and submit them to the study. They include feeding, interacting, bathing and sitting/standing/walking. Although it’s kind of a challenge to do the videos, mostly from a logistics point (two-minute videos take up a lot of space on my phone!), I think it will be a great way to track progress in the study.  

Shortly after Grace started taking the study drug, we noticed more vocalizations, more smiles, more alertness and some trying to move her arms. That was very similar to what other families in the study were seeing, and although those are very small things, we consider them big wins in our household, especially the smiles.

But I did notice another improvement when I made one of the one-month check in videos. Although Grace cannot sit, stand or walk on her own, you have to document that in a video. So, I sat her right in the middle of our loveseat, where her back was supported, but not the kind of support she is provided in her wheelchair. We’ve propped her up there in the past for photos, and I honestly expected she would immediately topple over to one side or the other, which is still probably important to document. However, much to my surprise, Grace sat up for the entire two-minute video, moving her arms and her head just a little as well. She tipped over just after the two-minute mark, and I have to say I was completely shocked. It’s nearly impossible to know if that’s an effect of the drug or just a good day for Grace, but I will always take small victories.

We are especially grateful to everyone who has supported us on our journey with the clinical trial this year. From those who have provided financial contributions for travel or other resources in helping us figure out exactly what we are trying to do, we feel truly blessed. You guys make life great on this Grace-Filled Journey, and I can’t wait to see what improvements the next video might show. 

And while we know this isn’t a cure for INAD, and likely won’t restore Grace’s health completely, we have already seen improvements in her quality of life, which is an awesome win for our family in the fight to #BeatINAD.

mlh

Sunday, March 17, 2019

Thank You For Being A Friend

Thank you for being a friend. Every time I have stopped to think about our church’s pancake fundraiser, I can’t help but think of the theme song from the Golden Girls. And I keep singing it over and over again in my head, because we really, truly are blessed to have such amazing friends.

Family photo at the pancake and sausage benefit.

Some of the decorations in the church fellowship hall.
One of our favorite photos of Gracie Lou!
Each year, our church hosts a pancake and sausage breakfast as a fundraiser for someone in the community, and this year, they asked if they could host it for us to help offset the travel costs of taking Grace to the clinical trial in New Jersey. Although sometimes it’s hard to be accepting of such generous thoughts and gifts, we agreed, mostly because it is a HUGE help to us in paying for the travel expenses, which add up fast, even when you’re frugal!


Grace's friends colored Beat INAD pictures for the wall.
Toppings for the pancakes.
Not that we arrived when it started first thing in the morning, but the church’s fellowship hall was absolutely beautiful. They had purple balloons on every table, and special Grace-Filled Journey placemats. Kids in the church’s preschool program and Grace’s kindergarten class colored Beat INAD pictures that hung on the wall in one corner of the room. They even set up a special coloring table where kids attending the breakfast could color their own pictures and hang them on the wall. We especially liked a photo booth type station where kids and families could get their photo taken with Flat Gracie.


Charlotte and her Mickey Mouse pancake.
I just happened to check Facebook when I was getting ready in the morning, and some of our friends had already been to breakfast and had tagged us in photos. It was so much fun to see them enjoying themselves and a really special community event.


Volunteers from the church wearing new Grace shirts.
Although breakfast was served starting at 7, I would say we arrived sometime after 9:30. It takes a little while to feed Grace in the morning, and most anyone that knows us, knows we don’t see 7 a.m. very often! 

Grace and her teachers.
Since it was raining, Kyle let me and the girls out underneath the awning and some of her former classmates were already waiting to see her. She had big smiles when Hazel and Kendall came over to say hello. And we enjoyed visiting with all those who came while we were there.

Grace and her friends Tim and Kris Carpenter.
Grace and some of her friends at the breakfast!
I have to say the food was fantastic as well. We loved the pancakes and sausage, and Charlotte even got a Mickey Mouse pancake that they made special for the kids who came. I think her dad ended up eating most of it though, as there was WAY too much going on for Charlotte to care anything about eating.

Kinsley Trader saved $100 of her own money from working to give to Grace.
 One especially touching moment was when Kinsley Trader, a junior high student in Hillsboro, brought Grace the money she had herself saved to donate. She had been working hard in her Uncle Matt and Aunt Alora's food truck and wanted to save her money to donate. Her mom told me she made a thermometer chart so she could keep track of her goal to raise $100. How amazing is that!!

Hanging out with my mom and dad.
After we ate, we just enjoyed chatting with our friends who came from all over the county to support us. Some came over to the table to get their picture taken with Grace. Others enjoyed visiting while Charley and I mingled around the room. But that entire morning, I just had such an overwhelming feeling of gratitude for everyone. From those who came early to set up and cook, to those who served and cleaned up, and of course, all those who came to eat, we feel truly blessed.

Charley coloring pictures with Dahlia and Demi Maass.
They announced in church the following morning that the breakfast raised about $5,700. Wow! Can you believe that?! We were so humbled, and that money will definitely help us offset the travel expenses we incurred in our first two trips out east, and we will save the rest for our return trip in August.

Grace's friends Lucy and Frankie in the photo booth.
So, to everyone who helped out that morning and to everyone who continues to follow our story and help us raise awareness for INAD, thank you for being a friend.

mlh

Thursday, March 7, 2019

Team Grace

Team Grace: Because some of the best athletes know that it’s always about more than just a game.

Over the past five years, countless teams have shared in our Grace-Filled Journey and invited Grace to be part of their team. From local junior high and high school teams, club teams, college teams, and even one Major League Baseball pitcher, we feel pretty blessed for the opportunity to raise awareness through sports.

The Lady Hiltoppers gave Grace one of their state medals.
Holding her state medal.
 In the past week alone, four teams have found a way to recognize Grace through their efforts. And that’s just the past seven days.

It started at the Orlando International Airport. I happened to be wearing one of the t-shirts from the Grace-Filled volleyball tournament last year, and two girls in line asked me if I was a volleyball player. After Kyle stopped laughing hysterically at their question, we had the chance to tell them about Grace. Turns out, they were part of a women’s rowing team at Johnson and Wales University in Rhode Island and they had a spring camp down in Florida. They wanted to know more about our story, so we shared a Flat Gracie with them and told them about our blog. We even managed to take a photo in the airport before we went our separate ways.


Members of the Johnson and Wales University women's rowing team and Flat Gracie.
When we returned home, we took the girls to the IESA seventh grade volleyball sectionals in Nokomis. Kyle’s cousin is a member of the team, and we went to cheer them on. When the team won regionals the week before, they posed with Flat Gracie for their team trophy photo. It was a fun game to watch, and we even had a connection to the opposing team, who also wanted to get her photo taken with Flat Gracie. When it came time for the team photo with the sectional trophy, the Lincolnwood coach came over and asked if Grace could be in it, as part of the team.

The very next night, we had been invited to bring the girls to the Hillsboro High School girls basketball season banquet. Coach Tuetken had texted Kyle the week before that the senior girls wanted to give Grace one of their state medals. After the meal, the five senior players got up to present a medal to Grace (who slept through the whole thing!) Senior MVP Sammi Matoush thanked Grace for being a special part of the Lady Toppers’ journey and for allowing the team to be part of hers. This momma might have cried just a little bit. I’m so grateful for such amazing young people with big hearts and a beautiful little girl, who shows the world what it means to be courageous each and every day.

Grace with the sectional champion Lady Knights volleyball team!
And before the week was done, we received a message from Kenny Lauderdale, a men’s soccer player at Rockford University (and an alum of the Grace Cup), inquiring about a Flat Gracie to take back to school and take a photo with his team. They want to be part of the journey too.

And like I said before, that’s just one week. There have been so many special teams and great athletes over the past five years. And we have tried to take Grace to as many games as we can, so she can be a part of all these amazing events.

Grace hanging out with Mary, who played on the Hardin-Calhoun seventh grade team.
Earlier this year, we got a letter from one of our favorite Team Grace members. She talked about what she had learned being part of this Grace-Filled Journey and why she wears her gracelet all the time. Even though she can’t wear it when she plays, she wrote that she put it on her water bottle to help her remember that it was just a game, and that she’s blessed to have the opportunity to play, something that’s truly not guaranteed for everyone.

Lincolnwood Lady Knights eighth graders and Flat Gracie.
We know that it’s highly unlikely Grace will ever kick a soccer ball, score the winning basket or run the one-mile race, but in her short seven years, she has already taught so many of us about the things that really matter in life. It’s fun to play, and even more fun to win. But at the end of the day, it’s always still just a game. And the things that matter most are the players who take some of these lessons to heart.

No matter the mascot or the team colors, all the players on Team Grace will always be the biggest winners in our book!

mlh