Wednesday, February 19, 2020

Feet of Grace

We get by with a little (or a lot) of help from our friends.




Kyle and I are continually humbled and blessed by the goodwill shown to us throughout our community as Grace battles INAD. Friends and family bring meals or come to visit. Churches keep us on their prayer chains. Just before valentines day, a church in Litchfield brought us a bag full of cards, and Kyle and I enjoyed reading all the scriptures people picked out for us.



Last weekend was a very special show of love for our family. For the second time, dancers from Fusion Dance Center hosted the Feet of Grace benefit in honor of our beautiful Grace. They held a show full of special dance routines and raised money to help us take care of Grace. In addition, Grace’s first grade teacher at Beckemeyer and some of her school friends hosted a bake sale during the performance.
 

Since Grace got sick last December, we haven’t really been able to take her very many places, due to cold weather and rampant sickness. But that Sunday (Feb. 9) was a pretty afternoon and we made the short trek to the high school for the show, where they had saved us seats in the very front row. Although Grace slept through part of the production, Charley was enraptured by the dancers from the very first song. She leaned over to me and said, “this is wonderful.” Her attention span didn’t make it through the whole concert, but we all loved being there.

One of my favorite parts of the concert was when it was over. We knew some of the dancers and their families, and many stopped by to say hi. But several of the dancers we didn’t know came over to meet Grace. They wanted to tell her they were dancing for her and that they hoped she felt better soon. It always warms my heart to see kids interacting with Grace, and makes me know the world will be a better place someday because of wonderful kids like these.





It doesn’t seem like enough just to say thank you to everyone who helped raise over $1,400 for our family that day, but we will always be grateful to our friends who help us get by, that day and every day on this Grace-Filled Journey.

Saturday, January 11, 2020

Another Grace Game In The Books

It was a great day for the Lady Blues of Illinois College as they picked up a big 81-48 win over conference foe Beloit from Wisconsin. Hillsboro native Carly Cameron even picked up a double-double with ten points and ten rebounds in the win.

But while it was a great game for the senior on the court, it was what happened on the sidelines that made it truly special.


At Carly's suggestion, Coach Jennifer McCormick and the Lady Blues hosted a Grace game this afternoon in the Bruner Center at Illinois College to raise awareness for INAD and funding for research.  Carly and her friend, Lindsey Storm, both former Lady Hiltoppers who have always been some of our biggest supporters, came by over Christmas break to see the girls. Carly told us that she's been wanting to do a Grace game with her team since arriving at Illinois College, but it seems that the stars aligned for a game this January.


We told Carly that we thought a Saturday game might work best for us, and together, we picked Jan. 11, when both the men's and women's teams hosted Beloit. After Grace's second admission to the hospital last week, we weren't entirely sure we would be able to bring Grace, but we promised that Kyle and Charley would go for sure. Fortunately, Grace was discharged from the hospital on Tuesday and had a really good week at home, and we decided to make the trip together.


I don't know how many Grace games we have been to as a family in the last five years, but they will always be some of my favorite memories. That's why we really wanted to make this trip a special one. From basketball to baseball and softball to soccer, we have loved meeting players from all over and sharing Grace's story. Classified as an ultra-rare disease, sharing Grace's story helps us bring more awareness to this devastating disease. And the more people who know, the better.


That's why we were just thrilled when Carly told us she and her teammates wanted to host a Grace game this year. And even more exciting that some of our family made the trip with us. Although there was some snow in the forecast, we made our way the hour and a half to Jacksonville in plenty of time for the game.


When we arrived, we saw the team hung a huge BeatINAD banner in the gym. In addition, instead of collecting admission for both of today's games, the school accepted donations for the INADCure Foundation, and brought in nearly $500. We continue to be so humbled and honored by people's generosity on our journey.


As we made our way down to the gym, we got a big wave from Carly and Coach McCormick stopped by to meet us. Meanwhile, Kyle was interviewed by one of the local television stations about our story, which was another great way to raise awareness. And we enjoyed sitting with our families for the game.

Just before they announced the starting line-up, our family was invited to midcourt for a special presentation. Carly and fellow senior Grace Yaunches presented our Grace with a jersey signed by all the members of the Lady Blues. Even cooler, after the game, we found out that jersey belonged to another former Lady Hiltopper (Jaicie Halleman), who went on to play for the Lady Blues as well.


It was an awesome game, as the Lady Blues dominated from start to finish. We have always loved going to sporting events together, and this one was so much fun. After the game, we had a chance to meet the team for a group photo, and Kyle told them a little more about Grace's story. We were so touched to see that the players had purple ribbons tied in their shoelaces as well.


She may only be eight years old, but our little Grace has touched so many lives in her eight years, and we are so proud of her for continuing to be an inspiration to so many. Special thanks to Carly and her teammates for helping us raise awareness and helping us make another really great memory on this Grace-Filled Journey.

Wednesday, January 8, 2020

An Unexpected Visit

This year’s holiday season started out just like any other. We celebrated Thanksgiving with both our families and had a wonderful day. We made Christmas cookies with Kyle’s family. Kyle even brought our tree into the living room so we could decorate it.

But on December 2, our holiday season took an unexpected turn. After having a cough for a couple of days, Grace started really struggling to breathe. A quick trip to the doctor’s office meant an ambulance ride to Springfield for our beautiful Grace. Despite Grace’s genetic illness, she has been very healthy over the past eight years, and she’s only landed at St. John’s Hospital in Springfield twice. The first time was more than two years ago and for less than 24 hours. The second was earlier this fall, for about 36 hours. Both were respiratory related, but since Grace has been healthy, she was able to recover quickly.


Kyle and I both assumed this trip to the hospital would be about the same. But we had no idea how sick our Grace really was. From the ER, she was moved to the PICU (pediatric intensive care unit) and diagnosed with RSV. At that point, she really struggled to breathe, and was placed on a bi-pap machine for a few days and later a high-flow nasal cannula.



But our Grace is a fighter, and wasn’t ready to leave us just yet.  During our two and a half-week hospital stay, we learned that Grace has episodes of central apnea, where her brain basically forgets to breathe. In most instances, she recovers on her own, or is able to be rousted from the episode by stimulation or a change in position. We also learned that it was no longer an option to feed Grace orally because her risk of aspiration was too great.  We came home on an NG feeding tube (through her nose), with hopes of getting a G tube when she is fully recovered from her respiratory issues. It was pretty scary for me at first, but you can truly do anything you put your mind to, and her feedings have gone really well.  I only tipped the pole over one time, and the feeding bag was closed so it didn’t even spill all over the floor.

With the help of the palliative care team at St. John’s, we were able to bring Grace home mid-December, not really knowing what the first few days would hold. Fortunately, Grace thrived at home, and we had an amazing Christmas and New Year’s with our family and friends. It was an incredibly special two weeks.


Then on Jan. 3, just over one month from her last hospital admission, Grace once again had trouble breathing and we ended up taking her back to the ER in Litchfield, where they discovered she had an infection. Since we didn’t have any oxygen at home for Grace, we opted to take her back to St. John’s where they could make her comfortable. When we arrived at St. John’s, Grace had a very high fever and was throwing up, and the doctor was concerned she was septic.  We asked them to make sure Grace was comfortable.


But our Grace is a fighter. She did great over the next few days with antibiotics and we got to bring her home once again. This time, we do have oxygen at home to keep her more comfortable. It’s been wonderful to be back home with our whole family and enjoy our time with Grace.


We want to give a special shout out to all the doctors, nurses, residents, techs and respiratory therapists at St. John’s Hospital. We loved getting to know all of you during our stay. The hospital is NEVER the place you want to be, but if you have to be at one, let me tell you, that’s the place to be. An extra-special shout out to Montgomery County’s own Aaron Golitko, who was her resident doctor the last couple of days and took extra special care of our Grace.  We are so incredibly grateful to each and every one of you, and it’s been our privilege to get to know you. We know you will keep working hard to take care of all the kiddos who end up there.




Just as it’s always been, the future is Grace’s story to write. We plan to follow her lead and let her be the guide on this Grace-Filled Journey. She’s always been so strong and such a fighter, and we are always proud of her. It’s been amazing to be back home, watching Charlotte take care of Grace, and remembering why it’s so important to cherish each and every single day making memories to last a lifetime.

“She is clothed with strength and dignity and she laughs without fear of the future.” Proverbs 31:25