tag:blogger.com,1999:blog-41551614704323995892024-03-13T12:57:29.303-07:00A Grace Filled JourneyIn November, 2014 we discovered that our three-year-old daughter, Grace, has a rare genetic disorder called INAD (infantile neuroaxonal dystrophy). This blog is dedicated to our little girl and the journey that we are on.agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.comBlogger272125tag:blogger.com,1999:blog-4155161470432399589.post-84887427171913429332020-08-18T19:03:00.000-07:002020-08-18T19:03:30.253-07:00Back To School Blues<p>It’s been an emotional week in the Herschelman household as students get ready to go back to school. <br /><br />While I have enjoyed seeing all the photos of the kids with their backpacks and school supplies, it’s also been a reminder that Grace isn’t starting school this year with all her friends.<br /><br />If things in our life were “normal,” Grace would be starting third grade this fall at Beckemeyer Elementary School, a place where she found lots of love and laughter for two and a half years. We made the hard decision last fall to take Grace out of her classroom because she just didn’t have the stamina to stay, even for just two hours in the afternoon.<br /><br />But for six years, I got to take a “first day of school” photo with Grace and celebrate in the joy school brought to her. </p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdBMEoaE0cAgWhIczZ3Crw_FWOxyRJVM6LA0v83CSWKQZmXjhFMBSiupMUt-RBhJ6Eyqak4N24munirkjoJvOkOhckgND555AWvMHU7LKDciKHV5wUJD8cLYoJPug1pHHiVgWoTsKdCTp0/s960/39387666_2223448344552018_6413830643444088832_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdBMEoaE0cAgWhIczZ3Crw_FWOxyRJVM6LA0v83CSWKQZmXjhFMBSiupMUt-RBhJ6Eyqak4N24munirkjoJvOkOhckgND555AWvMHU7LKDciKHV5wUJD8cLYoJPug1pHHiVgWoTsKdCTp0/s640/39387666_2223448344552018_6413830643444088832_n.jpg" /></a></div><p><br /><br />She started at our church’s preschool program with a full-time aide just before her third birthday. At the time, we knew Grace had some developmental delays, but we had no idea she would be diagnosed with INAD just three months later. She had her very first school program just after we found out she had INAD, and though I cried most of the way through it, I still remember her trying to sign the words to “Jesus Loves Me.” She also got to play the bells during her first Christmas program and play her drum when the kids got to bring instruments to school.<br /><br />During her three years in preschool, Grace was lucky to have two really great aides in addition to her teachers. They helped her with art projects. In the beginning, she was able to help with some special crayons we bought, and the aide would mark the portions of the page Grace helped with. She has always loved reading and being read to, and just interacting with kids.</p><p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-YPQpCUGyrWS615fUsWVeprg8mcIK3m0GunLTs-8uSbr7Sb8VMdIt6GzHYITJK19xi8xr6aVFcYSwCkEqePhUa_9zOT_x6J5pjgPg3SBg-2AO7FlE10IE7J5OoAPOGGoyM9HQXsLAsUtw/s960/39289295_2223448387885347_2119276214060318720_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="720" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-YPQpCUGyrWS615fUsWVeprg8mcIK3m0GunLTs-8uSbr7Sb8VMdIt6GzHYITJK19xi8xr6aVFcYSwCkEqePhUa_9zOT_x6J5pjgPg3SBg-2AO7FlE10IE7J5OoAPOGGoyM9HQXsLAsUtw/s640/39289295_2223448387885347_2119276214060318720_n.jpg" /></a></div><p><br /><br />After her preschool years, Grace spent two and a half years at Beckemeyer. She went to school for two hours in the afternoon, and had time to socialize with her friends in kindergarten. Although Grace would never learn to read or write, she loved this one lamb puppet and reading Junie B. Jones books with her teacher. We were very blessed that she had some amazing aides and teachers in kindergarten as well.<br /><br />I think the thing that always amazed me the most was the way the kids interacted with her. When I would bring her into the classroom, everyone would say “Grace” and come over to see her. They found joy in their interactions with her, even though she couldn’t talk to them. They still found a way to connect. My teacher friends tell me that’s the mark of some really great teachers, and we were lucky to have some of the best.<br /><br />It was a hard decision to pull Grace out of school, but as INAD progressed, it affected her hearing and her eyesight, making it harder for her to enjoy all the things that once made her smile. But it warms my heart to know she is still making a difference in the lives of so many of her peers. <br /><br />So, my momma heart is breaking a little this week watching other moms send their kids off to a strange, new school year. But I will forever be grateful for everyone who made school such a joyful place for our Grace.<br /><br /><br /></p>agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-36340161576850451362020-02-19T09:37:00.000-08:002020-02-19T09:37:11.283-08:00Feet of GraceWe get by with a little (or a lot) of help from our friends.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-3429541376533041992020-01-11T21:40:00.007-08:002020-01-11T21:40:55.762-08:00Another Grace Game In The Books<div class="p1">
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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
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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.</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-50445548590902295132020-01-08T18:47:00.000-08:002020-01-08T18:47:15.195-08:00An Unexpected VisitThis 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.<br /><br />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.<br />
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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.<br />
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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.<br /><br />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.<br />
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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.<br />
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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.<br />
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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.<br />
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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. <br /><br />“She is clothed with strength and dignity and she laughs without fear of the future.” Proverbs 31:25<br />
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<br />agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-7274898269403903352019-11-13T21:07:00.004-08:002019-11-13T21:07:53.851-08:00A Five-Year Anniversary
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"It does not do to dwell on dreams and forget to live." ~ the fictional Albus Dumbledore, headmaster of Hogwarts (Harry Potter series)</div>
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Five years ago, every single dream that we had for our then three-year-old Grace were crushed. How do I remember that it was five years ago today? When I looked at TimeHop, a photo came up of a billboard for St. Francis Hospital with our family photo. We were so excited to have been asked to be part of their campaign for their maternal center, and that day was the very first day I saw that billboard from the parking lot at the Ariston.</div>
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Kyle and I picked Grace up at preschool and went to the backroom at the newspaper office where we returned a call to a geneticist at St. Louis Children's Hospital. She had the results of Grace's whole exome sequencing test that had been done four months earlier in July. She patiently explained to us that Grace had an ultra rare genetic disorder called INAD (infantile neuroaxonal dystrophy). It's a disease that is characterized by a build-up of iron and other toxins in the brain and on the nerves, which causes a loss of all nerve function, and is always terminal. At that time, there were no treatment options or a cure. We were told just to continue doing therapy with Grace and making the best of the time we had with her. </div>
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I was at the Ariston that Thursday because as most Thursdays, I had lunch with my mom at the Ariston. This particular day, I asked her if we could sit in the back room away from the crowded lunch spot. And I tearfully told her what we had learned, which is probably one of the hardest things I have ever had to do. Kyle didn't join us for lunch that day, but he made a similar phone call to his mom, and we very gradually told family and friends. Kyle would eventually write a column about it for the paper, and we soon found out what a generous and supportive community we live in.</div>
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One of the most devastating statistics about INAD is that most kids don't live to see their tenth birthday. And while that's not always the case, we have seen quite a bit of regression in her condition over the past year. Grace was only three when we found out she had INAD, and it seemed impossible to believe we might only have seven years left with her. This fall, she turned eight, and while no one knows what the future holds, our days with Grace are numbered.</div>
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Although we knew that Grace had global delays in her development, like the fact that she never learned to walk independently or say more than a handful of words, therapists and health care providers thought for awhile she would be able to catch up on her skills. Kyle had dreams of her being on the United States women's national soccer team or being president of the United States someday. More realistically, he had dreams that she would go to high school sporting events with him to help him take stats, loving sports just as much as he does. I always hoped she would excel in school and maybe someday want to help us at the paper, making a difference in her community. But five years ago today, all our dreams for Grace, whether they be ballet classes, playing in volleyball games or just saying "Mommy, I love you," were gone. I know how much Grace loves me, but I will never get to hear her say those words.</div>
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I was having a particularly hard time one night in our kitchen, and Kyle looked at me and told me that if I didn't figure things out, I was going to miss everything that was great about Grace. At the time, it probably made me really mad at him, and was the cause of a fight. But it's kind of become a family mantra. You see, after her diagnosis, I spent a lot of time grieving for the dreams I had for Grace, dreams that would never come true. But Kyle was right. To continue grieving for those dreams meant I would miss all the wonderful things about Grace. And just because none of my dreams for her wouldn't come true, didn't mean that life still couldn't be wonderful.</div>
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Life's simply not fair. It never will be, and we may never know why things happen. Marriages fall apart. Kids get sick. Jobs fall through. Life is hard, and everyone faces different challenges. It's a good reason to be kind to everyone you meet because you never know what challenges they are facing. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx7VeiYA21uvYVTMQRkFlBEAAvKsB94R03ocYth_QtMfyKCqYyQHXrHqNMuDZhvv6E3DVoll3xQs_c705ES-YVqXMUeiyOzVBI83dgy18lweKbgozI66v8XWUR2O8T0VM6iz-_rqJJGjRf/s1600/Grace+Herschelman.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="315" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx7VeiYA21uvYVTMQRkFlBEAAvKsB94R03ocYth_QtMfyKCqYyQHXrHqNMuDZhvv6E3DVoll3xQs_c705ES-YVqXMUeiyOzVBI83dgy18lweKbgozI66v8XWUR2O8T0VM6iz-_rqJJGjRf/s320/Grace+Herschelman.jpg" width="320" /></a></td></tr>
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But despite all those challenges, we find there's always a reason to be happy every day. Just last month, we posted our 2000th #foreverhappydays photo. For the math majors in the room, that's almost five and a half years. I would be the first to admit that some days life's challenges make it incredibly hard to post a #foreverhappydays photo. And when I look back over the days, I can always tell when we had a particularly hard day. But we kept trying and we keep going. </div>
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Five years ago today was probably the single hardest day of my life in letting go of all the dreams I had for Grace. But I'm so glad that it doesn't keep us from living our best days with her. Remember, "it does not do to dwell on dreams and forget to live."</div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-75702300781495120602019-04-19T20:21:00.004-07:002019-04-19T20:21:36.503-07:00Dancing Queen Of The Softball Field<div class="p1">
Sometimes you have to make sacrifices to get what you want in life. Mary has always told me at work that you do the things you don't want to do, so you can do the things you do want to do. I've also learned that sometimes you do the things you want to do, consequences be damned.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimi7vDFEY-LeF_Idpyj691iW4poRhWp4ZX6O58GEEFXBhQPmeNnNKCqnUolxEBDwXAsqSJhrQ5bqSnmrKcFnHrm1KxvN6RvNrd8I0Y1X_HNRNR6tCHXwsVTHgLkRCLfGxIr9_sGOhwdST7/s1600/57306083_10213618896641082_643719437647609856_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimi7vDFEY-LeF_Idpyj691iW4poRhWp4ZX6O58GEEFXBhQPmeNnNKCqnUolxEBDwXAsqSJhrQ5bqSnmrKcFnHrm1KxvN6RvNrd8I0Y1X_HNRNR6tCHXwsVTHgLkRCLfGxIr9_sGOhwdST7/s320/57306083_10213618896641082_643719437647609856_o.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family photo at the Father Daughter Dance</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGDQgKHs-hc-8lyEnS-IdiWdqBfO4MPoB52UxmWWhgw3NFPbO38HnVDVWXuQcbOguZbqAuyQiOGRDw4Z1FT9MJdIXMKTLkB9V7xB9fWI7QGM0VU0Z7DSc_r3OqTxRCOffVWeQKM1-Z6NDb/s1600/57072646_2376940449202806_3562031470534983680_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGDQgKHs-hc-8lyEnS-IdiWdqBfO4MPoB52UxmWWhgw3NFPbO38HnVDVWXuQcbOguZbqAuyQiOGRDw4Z1FT9MJdIXMKTLkB9V7xB9fWI7QGM0VU0Z7DSc_r3OqTxRCOffVWeQKM1-Z6NDb/s320/57072646_2376940449202806_3562031470534983680_n.jpg" width="285" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kyle and his beautiful dates</td></tr>
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This weekend was a little bit of the latter as we managed to cram a week's worth of memories into two days with the daddy/daughter dance at Lincolnwood and the Grace-Filled Journey Game at Purdue Northwest University. The trip featured plenty of long drives and short nights, but looking back we wouldn't have changed a thing.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEG6VoGgyffLxWfyjzGcX-h-gfttwvthhtM1qtX4wyzxayHi2GuIvpP3h7hwDzUdu4LNBEthYHCckLeAvk9I6n-2ZenNO6ds75uPTBRfg67ITQZU6MPVwJTsbqZdqrszn6FiNndrxzy1oE/s1600/Grace3.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEG6VoGgyffLxWfyjzGcX-h-gfttwvthhtM1qtX4wyzxayHi2GuIvpP3h7hwDzUdu4LNBEthYHCckLeAvk9I6n-2ZenNO6ds75uPTBRfg67ITQZU6MPVwJTsbqZdqrszn6FiNndrxzy1oE/s320/Grace3.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kyle, Grace and the dance committee</td></tr>
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The daddy/daughter dance at Lincolnwood has been one of our favorites since it began four years ago. The second one was particularly special for me as I got to celebrate with not one, but two daughters as Charlotte was just a few weeks old. The night is always a little bittersweet, especially watching the other girls run around, something Grace should be doing if it weren't for this terrible thing called INAD. But ultimately, it's more inspirational than anything as I watch the community I love come out in droves in honor of my little girl.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAK0kDOUIMYgr9H0E6vypzu60U97QadLyLBkC3KsDXitdylGoPk1ml0FawkDiDsXBmsjQrbxochvqSh5109eRVIZdQ8nKbe0i-uyBGkEXUIfFD63bbSJm_KyemamsZIATEiiczZu1RMHas/s1600/FD20.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAK0kDOUIMYgr9H0E6vypzu60U97QadLyLBkC3KsDXitdylGoPk1ml0FawkDiDsXBmsjQrbxochvqSh5109eRVIZdQ8nKbe0i-uyBGkEXUIfFD63bbSJm_KyemamsZIATEiiczZu1RMHas/s320/FD20.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kensey and Charley</td></tr>
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This year was no different, with 70 young ladies and their dates in attendance, including my two princesses. With a western theme this year, Charley sported her boots, while both girls wore their special Bisous For Leo dresses we ordered from Pixie Lane. A portion of the proceeds of the dresses, made of a soft black fabric adorned with "kisses", go to the INAD Cure Foundation, which supports studies like Dr. Kotzbauer's at Washington University in St. Louis. They looked amazing and the dresses were a huge hit.</div>
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While we didn't spend a lot of time dancing, we did spend a lot of time on the dance floor as Charley was in heaven running around with my cousins Kayley and Kensey, who donated their time to the event along with my other cousin Katelyn and my aunt Angie. They've been at every dance too, which means the world to us. </div>
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The best part of the dance is what the proceeds go to. The group that puts on the dance decided to start a scholarship in Grace's honor for students going into the therapy or medical or special education fields. Reading the essays for the scholarship is always inspiring and we are proud that these talented and caring young men and women are representing Grace so well.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrP6s2EDQ6uABmB-vYZzP187O8N0WfM_NTJ0Ro9dlh4PwrpCh_CzEAALvxb4UlGltKCv9sLSLJHRh5I4Wb9sbTsTThqItpF1BTCQxj9lzHpTAKGFwhXEVMV915VDERoV-5MElwDl8LHlIO/s1600/56980689_2378689619027889_2068489222217531392_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrP6s2EDQ6uABmB-vYZzP187O8N0WfM_NTJ0Ro9dlh4PwrpCh_CzEAALvxb4UlGltKCv9sLSLJHRh5I4Wb9sbTsTThqItpF1BTCQxj9lzHpTAKGFwhXEVMV915VDERoV-5MElwDl8LHlIO/s320/56980689_2378689619027889_2068489222217531392_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging out with the Purdue Northwest softball team</td></tr>
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As the night wore down, we made our way to my parents' house, where we fed Grace supper. Originally we thought about feeding her at the dance, but we opted to just enjoy the moment and get a slightly later start for the next part of our journey. Rather than wake up early and head north to Hammond, IN, about a four hour drive or so from Hillsboro, we decided to make the trip after the dance so the girls could sleep in the car. We hit the road about 9:30 p.m. from Mom and Dad's and made it to the Hampton Inn in Tinley Park around 1 a.m. Traffic was nonexistent and the girls slept almost the whole way, which gave Mary and I some time to catch up. I like to drive, but I'm extremely lucky to have such a great co-pilot on long trips.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiCAcNimA7ChL2yQ2czH-we_w6YWNQC5aMIZ7ydE2yUyUA-WrvuSWp7mQLD0sb2y5v93MtP8Blgwnl6QsyA2cVFg3aaBnoNGfWotXoKQp5oT_WURrr4gfWsALXm3k34HemdN7gWaIwhzER/s1600/57294243_10156166908113671_61269671277494272_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiCAcNimA7ChL2yQ2czH-we_w6YWNQC5aMIZ7ydE2yUyUA-WrvuSWp7mQLD0sb2y5v93MtP8Blgwnl6QsyA2cVFg3aaBnoNGfWotXoKQp5oT_WURrr4gfWsALXm3k34HemdN7gWaIwhzER/s320/57294243_10156166908113671_61269671277494272_o.jpg" width="212" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charley helping Coach Stansell with the line up</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD859Lm5iwDnX2KU-EJvKSZSmsdMCF2TXngPqasSuT_jK2En2ENktEIrBUmQHda1yJw-XJbhaT_dBTlb-FdIw1IEazY65MmwodoUWsHRNpRtPlL4GZyNwks-GEz6fgHjeIkhlqZU6rkOKI/s1600/56874358_10156166909298671_3087718243259908096_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjD859Lm5iwDnX2KU-EJvKSZSmsdMCF2TXngPqasSuT_jK2En2ENktEIrBUmQHda1yJw-XJbhaT_dBTlb-FdIw1IEazY65MmwodoUWsHRNpRtPlL4GZyNwks-GEz6fgHjeIkhlqZU6rkOKI/s320/56874358_10156166909298671_3087718243259908096_o.jpg" width="212" /></a></td></tr>
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Being just a half hour away from the field allowed us to sleep in, or at least as much as you can with a two-year-old ball of fire like Charley Danger. Still, we managed to stay in bed until after 8 and took our time getting ready to make the final drive. After a quick lunch at Buffalo Wild Wings, where Charley showed that she has her daddy's skill at the claw machine, we made our way to the field.</div>
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Pride Coach Niki Stansell had told us that they had Grace-Filled Journey sunglasses and bracelets to hand out at the game, so we made sure to pick up ours. They came in handy as the weather was fantastic for the game, a lucky break since Hammond actually got snow the following day and Purdue Northwest called off their scheduled doubleheader.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrizdDkPAjhQ7zUMs-SjPYWfjkRWcHRcicrJWeCM9NfOMQ8TSJwrjGevtsPALirV2scPNbOz6_UHgMxC8CBave-SqblqMW6tIplwjIa9lOjcIUB2h5uaosgdDrg7LUzcBe4-vK5qm5LxnK/s1600/56806555_10156166912063671_3746094686301847552_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrizdDkPAjhQ7zUMs-SjPYWfjkRWcHRcicrJWeCM9NfOMQ8TSJwrjGevtsPALirV2scPNbOz6_UHgMxC8CBave-SqblqMW6tIplwjIa9lOjcIUB2h5uaosgdDrg7LUzcBe4-vK5qm5LxnK/s320/56806555_10156166912063671_3746094686301847552_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charley helped Grace with her first pitch</td></tr>
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We found Coach Stansell and our buddy, Pride shortstop Tessa Steffens, after that to see what they had planned. I had the pleasure of covering Tessa when she played for Litchfield High School and the support of her and her parents, Marty and Kara, have made these Grace games at Purdue Northwest possible. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSw4plmaVEXdVLjP3ngKtEHh0nsu1QDUNdYAbrOKY2ELyR5Gmfok816QFjLGJHrvJW6amiq9xsMZ60ZFoth_j6oknGUi4B9zkLR73fql-uGi93rsU46Gb86PKvKqeDkRnatnxCPf0tbKhX/s1600/57194534_10156166913173671_1579425208937218048_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSw4plmaVEXdVLjP3ngKtEHh0nsu1QDUNdYAbrOKY2ELyR5Gmfok816QFjLGJHrvJW6amiq9xsMZ60ZFoth_j6oknGUi4B9zkLR73fql-uGi93rsU46Gb86PKvKqeDkRnatnxCPf0tbKhX/s320/57194534_10156166913173671_1579425208937218048_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tessa giving Charley a signed ball for Grace</td></tr>
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<div class="p1">
Like the year before, the plan was for Grace, Mary, Charley and I to join the team on the field after player introductions, then for Charley to throw out the first pitch. What we weren't expecting was the Dangerous One to latch on to Coach Stansell and join her for the line-ups at home plate. Charley is very much a mama's girl and usually doesn't let Mary get far from her sight, but in this case, she seemed perfectly at home in the middle of the action.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGIXt5iCHxuyfigXLKnPtdjvLVreBsTK5pXG-29fyyQHZIJY5Ue4QQ5gbSNQjbIkuVSfw8G5XFHGinl_MrJCGNjgE8p6fxCmxYVV-R4qtwCJBlDyKwv5EvEiKbXzO7zTw404iVoF6HzxXl/s1600/57198818_10156166911023671_8934074116516872192_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGIXt5iCHxuyfigXLKnPtdjvLVreBsTK5pXG-29fyyQHZIJY5Ue4QQ5gbSNQjbIkuVSfw8G5XFHGinl_MrJCGNjgE8p6fxCmxYVV-R4qtwCJBlDyKwv5EvEiKbXzO7zTw404iVoF6HzxXl/s320/57198818_10156166911023671_8934074116516872192_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charley giving high fives to the players</td></tr>
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<div class="p1">
While we waited for the introductions, we watched the players get ready for the game, except Charley of course, who ran full tilt into center field, claiming Dowling Park as her own. I tried to prep her for her big first pitch, but she refused to even touch the softball I tried to hand her. Of course when the time came for the real thing, she rocked it, sprinting to within a few feet of Tessa before lobbing a perfect strike. I may be biased, but I'm pretty sure she's the next Jenny Finch. </div>
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She and Mary then went down the line and gave high-fives to the Purdue Northwest players, or at least some of them as Charley played favorites and shutout some of the Pride. After the national anthem, we found some seats behind the plate and settled in for the first of two games.</div>
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As good as the weather was, the Pride were even better as they swept both games from Ferris State. I got to hang with Grace for the first game, while Mary tracked the ever-in-motion Charley Danger around the park. Mary got her break in game two, when she was able to just sit back and feed Grace while watching our team continue to succeed. I got to watch part of that game too, but took one for the team and took Charley to the van for a nap after the opening inning. She made it all the way through the first song in her Frozen dvd before zonking out for an hour, waking up just in time to see the Pride put a bow on the second win.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX9OgCitCTmSa4NW4e0IP0RqhMHvdFyB6dilR0PI7bAlq8Rxv3jbcVaXTkG1ymBdi4QH9es9g241FZkfEGCEUwIMqrZB3yYuK-44_T23bmB8NWfwV_GpYxslf3kHwjOsXpzR6v-iRwAXYq/s1600/57034679_10213595452614996_8475137769809641472_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX9OgCitCTmSa4NW4e0IP0RqhMHvdFyB6dilR0PI7bAlq8Rxv3jbcVaXTkG1ymBdi4QH9es9g241FZkfEGCEUwIMqrZB3yYuK-44_T23bmB8NWfwV_GpYxslf3kHwjOsXpzR6v-iRwAXYq/s320/57034679_10213595452614996_8475137769809641472_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Snuggling at the game.</td></tr>
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After the game we said our goodbyes and took a few pictures, with a hope to return again next year. Tessa graduates this year, but the game has become one of our favorite events and we will take Coach Stansell and Purdue Northwest up on their hospitality as long as they'll have us.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRy3A_-e5AzPMLblZfD2Cdd15YIs_OscODnK1GDUuonwEWgzvnhSwxvLH2Yq6jh53MK9CgSRzx57qb1FJVAUHYDu0WP1UEYpeBfiJ7BdcXYB-we8oHM4Z0AwORFojPWy0yzh5QQ6NyZuhK/s1600/IMG_0280.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRy3A_-e5AzPMLblZfD2Cdd15YIs_OscODnK1GDUuonwEWgzvnhSwxvLH2Yq6jh53MK9CgSRzx57qb1FJVAUHYDu0WP1UEYpeBfiJ7BdcXYB-we8oHM4Z0AwORFojPWy0yzh5QQ6NyZuhK/s320/IMG_0280.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace was all smiles to get her photo taken with Tessa after the game</td></tr>
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<div class="p1">
The drive home was filled with more naps and more conversation, with a pit stop for pizza in Bloomington. We even got to share our story with some new friends at the table next to us. We are always touched when someone asks about Grace and we love to share her story. She inspires us a lot and hopefully she can do the same with our new friends, who we gave a couple Flat Gracies.</div>
<div class="p1">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX9uFxRMg1Cmplroas_NIr5yjiOU0Ue691XQEgWyKNzu_5oibNQvz4VJGTDkU71WxmEal2eJ6BpOHMumguYEXZArfLgBSCWq2wSUpLl0KHqUjuF7HBcBM4c_8_JellaTALAHVjnI-wRP7E/s1600/56887138_2139909102745347_6191882053735153664_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX9uFxRMg1Cmplroas_NIr5yjiOU0Ue691XQEgWyKNzu_5oibNQvz4VJGTDkU71WxmEal2eJ6BpOHMumguYEXZArfLgBSCWq2wSUpLl0KHqUjuF7HBcBM4c_8_JellaTALAHVjnI-wRP7E/s320/56887138_2139909102745347_6191882053735153664_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family photo before heading for home</td></tr>
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<div class="p1">
It was late when we got home, but it was more than worth the limited sleep for all the memories. Ultimately, the weekend was kind of what I dreamed for Grace and for Charlotte when I found out we were having girls. I hoped they would be able to do what they wanted in life, whether that be the princess on the dance floor or the warrior on the playing field. I know that's probably not going to be possible for Grace, but God has given her a different mission and she is definitely both a warrior and a princess. For Charley, I just want to keep surrounding her with good role models, strong, smart and talented women like the group that organizes the dance, my cousins, Tessa and of course, her mom and Grace. And I'll make whatever sacrifices I need to to make that happen.</div>
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krh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-63183510317945160892019-04-08T20:56:00.005-07:002019-04-08T20:56:59.398-07:00A One-Month Update<pre style="background-color: white; color: #333333; padding: 0px; white-space: pre-wrap !important;"><span style="font-family: Georgia, Times New Roman, serif;">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.</span></pre>
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<pre style="background-color: white; color: #333333; padding: 0px; white-space: pre-wrap !important;"><span style="font-family: Georgia, Times New Roman, serif;">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</span></pre>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-77109880280143395232019-03-17T18:47:00.001-07:002019-03-17T18:47:29.898-07:00Thank You For Being A FriendThank 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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBHwxF6a2pjf44DwPE4dQ3LoaVDbe89D6a9Jzy-x8SybbchofajEpyfYGLmmEglraaSdj1tEa3rjonIJk9vM5LdJc36h72DxflASS9KOt2Qwzvc-MC1YN252SWjSMcRWVXDhTBkiVslixO/s1600/53913790_10157220393417369_1755772275438649344_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBHwxF6a2pjf44DwPE4dQ3LoaVDbe89D6a9Jzy-x8SybbchofajEpyfYGLmmEglraaSdj1tEa3rjonIJk9vM5LdJc36h72DxflASS9KOt2Qwzvc-MC1YN252SWjSMcRWVXDhTBkiVslixO/s320/53913790_10157220393417369_1755772275438649344_n.jpg" width="224" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family photo at the pancake and sausage benefit.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid7Rbqx-CrDgc20t7GjhVdL4leWKjQrV88FaW52KYq-wimz3SPYnJS4AYkEp94kg9jeR31jJdPvTDEHC5XVL2eUiMHSJiDX_MWNQ3wBDg5a6-vVabytHrABFjSwPq5vGeY4jteqsqwiKPu/s1600/53285645_10213696777926158_1047216904843821056_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEid7Rbqx-CrDgc20t7GjhVdL4leWKjQrV88FaW52KYq-wimz3SPYnJS4AYkEp94kg9jeR31jJdPvTDEHC5XVL2eUiMHSJiDX_MWNQ3wBDg5a6-vVabytHrABFjSwPq5vGeY4jteqsqwiKPu/s320/53285645_10213696777926158_1047216904843821056_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some of the decorations in the church fellowship hall.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8n8CjXwZ8eBSy2ZiXIku3cdMWpMpX7dJZcoRLlAUbkgQp5XEUSlhgofGuZpwEa2eAUaM8U1o4UhLt8xlB8TgQdUS8hBpqjG9CL06NjDWStc73ILKzOCojNTxzdJfnSd9SvzrwEzxHKQmd/s1600/53336682_10213696779046186_2028166145097334784_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8n8CjXwZ8eBSy2ZiXIku3cdMWpMpX7dJZcoRLlAUbkgQp5XEUSlhgofGuZpwEa2eAUaM8U1o4UhLt8xlB8TgQdUS8hBpqjG9CL06NjDWStc73ILKzOCojNTxzdJfnSd9SvzrwEzxHKQmd/s320/53336682_10213696779046186_2028166145097334784_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of our favorite photos of Gracie Lou!</td></tr>
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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!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifFmumOB6IFIdcA60qjTEF1pn5pL7RzQBSyEgZzkMsYL06Zr9g3TItgEuAJRlB4U7I4O8BQ5WCJsV98ob23KPfCO6aZp6N6_DledXpycAjVtQ1CtSDHGeXhjBjQQhjQsF5bX-byydmCxoo/s1600/53343489_10213696778166164_8344493862621806592_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifFmumOB6IFIdcA60qjTEF1pn5pL7RzQBSyEgZzkMsYL06Zr9g3TItgEuAJRlB4U7I4O8BQ5WCJsV98ob23KPfCO6aZp6N6_DledXpycAjVtQ1CtSDHGeXhjBjQQhjQsF5bX-byydmCxoo/s320/53343489_10213696778166164_8344493862621806592_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace's friends colored Beat INAD pictures for the wall.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMLENM9mPDB22PAP80uXCcUey7QmzeogbpvtIfjGZtaqsHjDj72RLPEKGzpi0wgOiDTfD18BKPo1WHi8c78P0K06UyiNWlzXOpy17fIyUSaPXcqiFqlCr71fpbzza5uNXpkwEkmly0JXpf/s1600/53439656_10213696778566174_750798023218429952_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMLENM9mPDB22PAP80uXCcUey7QmzeogbpvtIfjGZtaqsHjDj72RLPEKGzpi0wgOiDTfD18BKPo1WHi8c78P0K06UyiNWlzXOpy17fIyUSaPXcqiFqlCr71fpbzza5uNXpkwEkmly0JXpf/s320/53439656_10213696778566174_750798023218429952_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Toppings for the pancakes.</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfbKjVew9l8giROp_OqvPOzyxOo4l_HPovJFZYa3sxCCZjSqBblcdA4zPRkl5mKGYjmInq1rxsnY4HzZK6QINjcp_SvztU2TmqjddBZaxB8jlmz9uKEjT-Ke7Hgmy5RA5fVB_h-jJMwZam/s1600/54049574_2354866881410163_2958375474939559936_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfbKjVew9l8giROp_OqvPOzyxOo4l_HPovJFZYa3sxCCZjSqBblcdA4zPRkl5mKGYjmInq1rxsnY4HzZK6QINjcp_SvztU2TmqjddBZaxB8jlmz9uKEjT-Ke7Hgmy5RA5fVB_h-jJMwZam/s320/54049574_2354866881410163_2958375474939559936_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charlotte and her Mickey Mouse pancake.</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQHFv5OL72-td8u1oV_YzVY3wJn2TtQ4W6vfcoqtbhJAKglrYMoL2hlG4lntfhIqxZfVX3ujLZ2KdR3ZGFHl313295aGNrAwUf97VA8yYBF7OjMWWHnfgyXHM6vUl1hi60InsyiJgE_rr6/s1600/53216090_10157220393642369_7567582137595985920_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="250" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhQHFv5OL72-td8u1oV_YzVY3wJn2TtQ4W6vfcoqtbhJAKglrYMoL2hlG4lntfhIqxZfVX3ujLZ2KdR3ZGFHl313295aGNrAwUf97VA8yYBF7OjMWWHnfgyXHM6vUl1hi60InsyiJgE_rr6/s320/53216090_10157220393642369_7567582137595985920_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Volunteers from the church wearing new Grace shirts.</td></tr>
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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! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzBnuHmrkofbj2JZB-FHaREfzD8XToMQtp8U_3iUBF028z94BxYFgpj0oBXr9httXQ3BAtqnT7GQJzkh8iNIx0HJD4F7YAcPFPrevZwhn6XTwWs1oUcA1m33nNHnKODScqp58eYl0ORexs/s1600/53417897_2354866888076829_25544713129951232_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzBnuHmrkofbj2JZB-FHaREfzD8XToMQtp8U_3iUBF028z94BxYFgpj0oBXr9httXQ3BAtqnT7GQJzkh8iNIx0HJD4F7YAcPFPrevZwhn6XTwWs1oUcA1m33nNHnKODScqp58eYl0ORexs/s320/53417897_2354866888076829_25544713129951232_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace and her teachers.</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxydYBzw_X2jWugY3b93to_JskooqotdKQHgSIO77KO1CWCmnG7JPoJ7isizQdlBwQMFV98gDemLfy9pq4OYWfePYLEugb7-ghrT0Mzt4kcEhA9W1ahzwqfBpAi7W1Qh_3mVP7lNxtiqur/s1600/53465047_10214065959503227_7672164642793193472_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxydYBzw_X2jWugY3b93to_JskooqotdKQHgSIO77KO1CWCmnG7JPoJ7isizQdlBwQMFV98gDemLfy9pq4OYWfePYLEugb7-ghrT0Mzt4kcEhA9W1ahzwqfBpAi7W1Qh_3mVP7lNxtiqur/s320/53465047_10214065959503227_7672164642793193472_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace and her friends Tim and Kris Carpenter.</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhql-o4-Hon07QyqI_vlvCeBM_MWHT_P93ArCssGOAaVRH7YcRugGylvbFUqDcoGhQ-vkZXapaEA4FJRqcmvRvT5V6_x7IYne_dYojtyc8BkG3Ad8dim8MItmVgCe9OYojFMRBcKtaJY0hW/s1600/53381768_10157220393982369_8882549193458057216_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhql-o4-Hon07QyqI_vlvCeBM_MWHT_P93ArCssGOAaVRH7YcRugGylvbFUqDcoGhQ-vkZXapaEA4FJRqcmvRvT5V6_x7IYne_dYojtyc8BkG3Ad8dim8MItmVgCe9OYojFMRBcKtaJY0hW/s320/53381768_10157220393982369_8882549193458057216_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace and some of her friends at the breakfast!</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoY2xrKsbKOwqvGpjghBDBpe39206gwBp3V_fj0OV_q2OVAFGkLt_Eilw2O7PeKMSbA3idOV5NHW4_7fl1q9T9LWH6ywauWUVyPhpVoc9NLcrT_XdT1vlklHXpwSti0Wa4xWOiLlRmKaG7/s1600/53539918_10157220393762369_5096284004454236160_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoY2xrKsbKOwqvGpjghBDBpe39206gwBp3V_fj0OV_q2OVAFGkLt_Eilw2O7PeKMSbA3idOV5NHW4_7fl1q9T9LWH6ywauWUVyPhpVoc9NLcrT_XdT1vlklHXpwSti0Wa4xWOiLlRmKaG7/s320/53539918_10157220393762369_5096284004454236160_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kinsley Trader saved $100 of her own money from working to give to Grace.</td></tr>
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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!! <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYv2wK09a9F2HeT48pSnpgC3AXepSyCHgfSmCuDwRVGPycId7JNl8Z2XdwMW0w_y5A0TODvYxhf0Il_axfV8xyBsO-zkSxNpnZd32V3IdlfckPSExuYqrrUDXG_ndXyVY45alfAz-YimEC/s1600/53589960_10157220393542369_4865065655549820928_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="264" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYv2wK09a9F2HeT48pSnpgC3AXepSyCHgfSmCuDwRVGPycId7JNl8Z2XdwMW0w_y5A0TODvYxhf0Il_axfV8xyBsO-zkSxNpnZd32V3IdlfckPSExuYqrrUDXG_ndXyVY45alfAz-YimEC/s320/53589960_10157220393542369_4865065655549820928_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging out with my mom and dad.</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXR9CwdjrhlGXcOsJlVXyoR-cLA0bbZwtRpkNRKyJnjTSx8f8DzFuUkOG9ZFWYpUzRqrC6VrxOGnOjyX_irEM4cbQ5m7dnNBAxqN3Hx5ylzrQPTy0Nl_bYgsfbx5V4y-JB_3GN4AslzNoz/s1600/53795339_10218356170005990_2957669992201453568_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXR9CwdjrhlGXcOsJlVXyoR-cLA0bbZwtRpkNRKyJnjTSx8f8DzFuUkOG9ZFWYpUzRqrC6VrxOGnOjyX_irEM4cbQ5m7dnNBAxqN3Hx5ylzrQPTy0Nl_bYgsfbx5V4y-JB_3GN4AslzNoz/s320/53795339_10218356170005990_2957669992201453568_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charley coloring pictures with Dahlia and Demi Maass.</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw_SE-D-UJoB2ojdL4tA3i7z8msZf19UCEjAUijxz1flNrVMulybQww7FfSMfgQ0SwTOUPKkM48ydTqppp4wwzuPpK6eIpscVetlvZVXzgHMqJSIh39xYgLOZWfOVc_U5n6j2lm3vFt-7V/s1600/53560140_10155856150316603_4427147195162034176_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw_SE-D-UJoB2ojdL4tA3i7z8msZf19UCEjAUijxz1flNrVMulybQww7FfSMfgQ0SwTOUPKkM48ydTqppp4wwzuPpK6eIpscVetlvZVXzgHMqJSIh39xYgLOZWfOVc_U5n6j2lm3vFt-7V/s320/53560140_10155856150316603_4427147195162034176_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace's friends Lucy and Frankie in the photo booth.</td></tr>
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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.<br /><br />mlhagracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-40507222699388832952019-03-07T19:57:00.000-08:002019-03-07T19:57:08.678-08:00Team GraceTeam Grace: Because some of the best athletes know that it’s always about more than just a game.<br />
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik0dQmjGz6eVCiJsoqIuJwAUAUZttgGNiCowmhQMxMLUcMru67jJ-jtBnPZDcEFGbiQcQ9h0iXbDbiFVlv_7-3oXShCvCoOuDPtmp0kHbyL9EaNrhTDvisRpjZAu1K9ooCKAXWO0KcO77b/s1600/53352499_2352619114968273_7630942315485331456_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEik0dQmjGz6eVCiJsoqIuJwAUAUZttgGNiCowmhQMxMLUcMru67jJ-jtBnPZDcEFGbiQcQ9h0iXbDbiFVlv_7-3oXShCvCoOuDPtmp0kHbyL9EaNrhTDvisRpjZAu1K9ooCKAXWO0KcO77b/s320/53352499_2352619114968273_7630942315485331456_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Lady Hiltoppers gave Grace one of their state medals.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGx_fNESyDJg5_PrLWTcRpD_C-8yljX23V4VsINK8k_HC41ZTDymWW5MR8DDOX2PA98nIn3uFgkQu_W_vYxP1o7rIOpVAUc2BeGW8WHOXeMHTmBGaak8Nd2y7ateGzfSrO7coL34VOvCoQ/s1600/53117801_2352619121634939_1609249612164497408_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGx_fNESyDJg5_PrLWTcRpD_C-8yljX23V4VsINK8k_HC41ZTDymWW5MR8DDOX2PA98nIn3uFgkQu_W_vYxP1o7rIOpVAUc2BeGW8WHOXeMHTmBGaak8Nd2y7ateGzfSrO7coL34VOvCoQ/s320/53117801_2352619121634939_1609249612164497408_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holding her state medal.</td></tr>
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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.<br />
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHN8lCgzEZoRc6lZ4EP72RrKjW0uwKc6_0dJjSt8YTXfEYC1xLW6dwApOpopVR-9vluzxXQmTqSw189jN_h-SIfRevGrXFiXoH41mplwLjsfZ6LQGg_AhlncAt90oftoOO3DAoF_AG3xLC/s1600/52976983_2350647028498815_5225247617356660736_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHN8lCgzEZoRc6lZ4EP72RrKjW0uwKc6_0dJjSt8YTXfEYC1xLW6dwApOpopVR-9vluzxXQmTqSw189jN_h-SIfRevGrXFiXoH41mplwLjsfZ6LQGg_AhlncAt90oftoOO3DAoF_AG3xLC/s320/52976983_2350647028498815_5225247617356660736_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Members of the Johnson and Wales University women's rowing team and Flat Gracie.</td></tr>
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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.<br />
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpnTTRwasFR0M1AScjS8b9Z8fq6uLTESotj-s84qExog4eup2MOI5RRluA42Xix8sgwObRck3PxokmDTT8KMLrzgvU4ZD2qHfRTdQtWtBSpjLscpbgWi_9nx-3gf_hxyLNDgU-eJXf8WbE/s1600/53046722_2352007875029397_1412754480415375360_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpnTTRwasFR0M1AScjS8b9Z8fq6uLTESotj-s84qExog4eup2MOI5RRluA42Xix8sgwObRck3PxokmDTT8KMLrzgvU4ZD2qHfRTdQtWtBSpjLscpbgWi_9nx-3gf_hxyLNDgU-eJXf8WbE/s320/53046722_2352007875029397_1412754480415375360_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace with the sectional champion Lady Knights volleyball team!</td></tr>
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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.<br />
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBThIUT-LZwAeR3aIS1eVyIvTY81QR6YBlQGy3_FeRRnXcHgAgzzfuFnLwI1-hqMSvlPgnWLDjCbV-n9b540E9fPosrM5IYIqHPgZbg3Db3O2tISB9-PGJlEEZUBzGvrjvgQ3gFjlAwtPj/s1600/53297029_2352007895029395_5133127333430951936_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBThIUT-LZwAeR3aIS1eVyIvTY81QR6YBlQGy3_FeRRnXcHgAgzzfuFnLwI1-hqMSvlPgnWLDjCbV-n9b540E9fPosrM5IYIqHPgZbg3Db3O2tISB9-PGJlEEZUBzGvrjvgQ3gFjlAwtPj/s320/53297029_2352007895029395_5133127333430951936_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace hanging out with Mary, who played on the Hardin-Calhoun seventh grade team.</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-V_aJqc_Ibm6RtM3daA2Y7CgWYkqoyBZhkvNe57UDiVBgkVYSUoK2DqdNL1Dogk6qRsLLAHxM3q4aN7dVrZt-KiE2liXQ55sfACkNHbuCUIxpNSAWwRazS-tGM3kBuSZ-qlHnRisVjPrY/s1600/53320103_2353222764907908_4644114387311788032_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-V_aJqc_Ibm6RtM3daA2Y7CgWYkqoyBZhkvNe57UDiVBgkVYSUoK2DqdNL1Dogk6qRsLLAHxM3q4aN7dVrZt-KiE2liXQ55sfACkNHbuCUIxpNSAWwRazS-tGM3kBuSZ-qlHnRisVjPrY/s320/53320103_2353222764907908_4644114387311788032_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lincolnwood Lady Knights eighth graders and Flat Gracie.</td></tr>
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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. <br />
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No matter the mascot or the team colors, all the players on Team Grace will always be the biggest winners in our book!<br />
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mlhagracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-54030754955366852252019-03-06T20:21:00.000-08:002019-03-06T20:21:53.195-08:00A Benefit BreakfastIf you’re anything like me, you’re already thinking about your next meal and and how you’re going to get away with not cooking it. Well, on Saturday morning, we have a great plan already set in motion for you!<br />
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Our church family at the Hillsboro United Methodist Church (537 Rountree St.) is hosting its annual pancake and sausage breakfast as a benefit for Grace and to help our family offset the costs of taking her to New Jersey for the first-ever clinical trial.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6JSrHypoczOQajNGmVqKbbV2zSn9uum9aL4tIbYgqFBeaWmV1Z5TZL1zi9HBYRx19MsnBzMruIlUdDg0kXM32C64AGsDB4wer-KcTVH89y9Boz32zYpgScCU99LZF4EuL4KlG8t0Rv_kV/s1600/27858720_10211029128298492_5874392052463027460_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6JSrHypoczOQajNGmVqKbbV2zSn9uum9aL4tIbYgqFBeaWmV1Z5TZL1zi9HBYRx19MsnBzMruIlUdDg0kXM32C64AGsDB4wer-KcTVH89y9Boz32zYpgScCU99LZF4EuL4KlG8t0Rv_kV/s320/27858720_10211029128298492_5874392052463027460_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charlotte loved her Mickey Mouse pancake last year.</td></tr>
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Before I get too far along, here’s the details on how you can participate. Church volunteers will be serving pancakes and sausage in the fellowship hall from 7 a.m. to noon on Saturday, March 9. Donations will be accepted for the meal. And I’ve heard there will even be Mickey Mouse pancakes for the kiddos!<br />
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We feel so blessed that our church family has offered to help us out this year. For many years now, our church has hosted this breakfast and raised funds for local families or groups. This year, organizers knew we would have added expenses in taking Grace to New Jersey so she could be part of the clinical trial. This year, we will have three trips out east and one next February at the completion of the trial. <br />
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The trial itself is free for Grace to participate in. We don’t have to pay for any of the medicine or any of the testing or appointments that go with it. However, we do have to pay for the travel to get out there, which has included gas, hotel stays, airfare and meals. We try to be pretty thrifty when we can, but this benefit will definitely help us out in making sure we have everything covered.<br />
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It’s always a really neat day too. When Kyle and I first got married, we used to volunteer on the Friday evening before the benefit to help set up tables and get everything ready. You see, Kyle and I aren’t exactly what you call “early risers,” so the Friday night set up worked much better for us than actually having to be there by like 5 a.m. (which we almost never see . . . )<br />
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Since having kids, it’s gotten harder for us to volunteer, but we always try to make it to eat there and support our church and the community they are helping that particular year. Last year, it fell on the same day as Charlotte’s first birthday party, so we didn’t get to eat there, but we managed to get a to-go order and eat at home. She was thrilled with her Mickey Mouse pancake, and I’m sure she will love it just as much this year!<br />
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Our family is planning to be there that morning to enjoy some awesome breakfast and say thanks to everyone who continues to support us on our Grace-Filled Journey. You probably won’t find us there when it starts at 7 a.m., but we look forward to being there. We hope to see you there too!<br />
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mlhagracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-55119282836210710912019-03-04T21:01:00.000-08:002019-03-04T21:01:19.490-08:00Happy Tenth AnniversaryAs we rode into Walt Disney World last Thursday, I told Kyle it was just about the same time that we were getting married ten years earlier. In some ways, it seems hard to believe we’ve been married for ten years, while other times, it’s hard to remember a time that we weren’t together.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghRdP2G0yU0g_HjTePdr_S0N2JGPvwvojphhYL5zFve6QkWsx2lnIol_zELSOHjrBX_6DR0IwbiTuw6M8RUx8BymLepCY2m4-DnZN6BH3wcokdCeuv3tdhyphenhyphenMPsAFg9-sTGa2G4rsM4YRNJ/s1600/53556635_10213321414764221_6320449034997727232_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghRdP2G0yU0g_HjTePdr_S0N2JGPvwvojphhYL5zFve6QkWsx2lnIol_zELSOHjrBX_6DR0IwbiTuw6M8RUx8BymLepCY2m4-DnZN6BH3wcokdCeuv3tdhyphenhyphenMPsAFg9-sTGa2G4rsM4YRNJ/s320/53556635_10213321414764221_6320449034997727232_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Anniversary Dinner at Cafe Narcoosee's</td></tr>
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This year, we celebrated with a three-day trip to Orlando, FL, to visit the Wizarding World of Harry Potter at Universal Studios. We started talking about taking a trip to celebrate sometime last year, and it seems like we talked about a million places. Kyle lobbied for New York City in the beginning because he wanted to take me to see a show on Broadway. But ultimately, we decided that Universal Studios was the perfect place to mark ten years together. And thanks to our friend, Laura Wagahoff at It’s a Small World Adventures by Laura, it was perfect. Extra special thanks to Grandma and Grandpa Galer for keeping the girls so we could enjoy a weekend getaway.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSZOO27piNRIw6trdOp1U3i99HCZYl7E-M3ygE3Dp0RULo1peKml9LDsjdGGPigrQYDFIXP9ZjF10HtY-PlBEFr9sTXDpsD63N400Ssacvp2KWU_B5I5kQq4vlfWOVZ09kw_wf9rCzKZr4/s1600/52835782_2077002865702638_399136327339081728_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSZOO27piNRIw6trdOp1U3i99HCZYl7E-M3ygE3Dp0RULo1peKml9LDsjdGGPigrQYDFIXP9ZjF10HtY-PlBEFr9sTXDpsD63N400Ssacvp2KWU_B5I5kQq4vlfWOVZ09kw_wf9rCzKZr4/s320/52835782_2077002865702638_399136327339081728_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">All dressed up to celebrate our tenth anniversary.</td></tr>
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Laura did all the booking for us, and somehow, we’ll say that old Disney magic, everywhere we went, people knew it was our anniversary. We got purple and orange Happy Anniversary balloons (to match our Magic Bands) when we checked into the hotel, along with a photo signed by Mickey and his crew. The hotel manager even left a card on our bed with a chocolate treat in celebration of our anniversary. I would definitely say we felt spoiled the entire time we were there.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAjIlxKpyFlX2hc7nE4Fm1Iq9ZV0BCabs_hbhShr2K8_sxMzlywRYGNqLZrEUS6SXbEvZWg5jtzMg0UbNsZpFDUF8d02wDurIMJDKfeYrGJTmp9bZBSl_1ofhtUfBPNkSdmhPKDVQszRN2/s1600/53160191_10213321414804222_307434489192120320_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAjIlxKpyFlX2hc7nE4Fm1Iq9ZV0BCabs_hbhShr2K8_sxMzlywRYGNqLZrEUS6SXbEvZWg5jtzMg0UbNsZpFDUF8d02wDurIMJDKfeYrGJTmp9bZBSl_1ofhtUfBPNkSdmhPKDVQszRN2/s320/53160191_10213321414804222_307434489192120320_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting spoiled at dinner.</td></tr>
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Although we stayed on Disney property, we hadn’t really planned on visiting any of the Disney Parks, so Laura found us a romantic restaurant called Cafe Narcoosee’s at the Grand Floridian to celebrate on our anniversary. We took a bus from our hotel to the Magic Kingdom, and then Kyle suggested a boat ride across the lagoon to get to the restaurant. Our table was right on the water and the food was amazing. We capped off the evening watching the fireworks at the Magic Kingdom.<br />
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<tr><td class="tr-caption" style="text-align: center;">Visiting the Wizarding World of Harry Potter.</td></tr>
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We spent the next day wandering around two parks at Universal Studios. And from the “caraoke” on our first Uber ride to the butterbeer at the Leaky Cauldron, the day was nearly perfect. We enjoyed walking around all the Harry Potter sights and doing some shopping. And even though we were way too chicken to ride the Harry Potter roller coasters, we found a few rides in the Dr. Seuss section that were more our speed. I even beat Kyle at air hockey in the arcade. To end our day, we found an Italian restaurant just outside Universal that reminded us of our honeymoon to Italy.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJo4YW7CMSwgCi2BKOFpVUQSByzc_r8oP7p1WDXe_Lkkk1L4olZ7MGmotGaleasuwxqsXIG2MzaO8QuRsmXj3atKuQnRsQPKpRQheWezExYieBxYo_6-1hS_j-oLxMzvBMDgC6vGJWM7Kb/s1600/52666792_2078387755564149_8248312223261261824_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJo4YW7CMSwgCi2BKOFpVUQSByzc_r8oP7p1WDXe_Lkkk1L4olZ7MGmotGaleasuwxqsXIG2MzaO8QuRsmXj3atKuQnRsQPKpRQheWezExYieBxYo_6-1hS_j-oLxMzvBMDgC6vGJWM7Kb/s320/52666792_2078387755564149_8248312223261261824_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Drinking butterbeer at Universal Studios.</td></tr>
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All too soon, it was the final day of our trip. We slept in and enjoyed some time at Disney Springs. Lunch at Frontera by Rick Bayless was one of the best meals of our trip, and of course, we did way too much shopping for the girls again. Before we left, we stopped for some gelato, which also reminded us of our time in Italy ten years ago, and a visit with one of my high school friends.<br />
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Throughout the weekend, Kyle and I talked about other anniversary celebrations. We moved into our new house the day before our first anniversary, so that one was extra special to us, celebrating in our first home. My mom brought over dinner, and we dined by candlelight before eating some not-so-delicious year-old wedding cake. I’m not sure who started that tradition, but I think it’s one we could live without!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXGgFxbmeDsanoYv4HWRezITfXV83VHo8UfIhY2XJILbNCtG6xJkFpwaTJDSF-DVmsu1fb99kmFfCfXogRuzZWvDpgCC-0ENW1vi25SS_Rdt9B78BG7r5LeIZCac_cGiz97bUrdYlmMEzE/s1600/53672048_10213331799143824_6861371690295754752_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXGgFxbmeDsanoYv4HWRezITfXV83VHo8UfIhY2XJILbNCtG6xJkFpwaTJDSF-DVmsu1fb99kmFfCfXogRuzZWvDpgCC-0ENW1vi25SS_Rdt9B78BG7r5LeIZCac_cGiz97bUrdYlmMEzE/s320/53672048_10213331799143824_6861371690295754752_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lunch at Disney Springs on the last day of our trip.</td></tr>
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Other years are fuzzy. TimeHop reminded me that Kyle made me breakfast in bed of French toast a couple of years. And we love to eat out at the former Church Street Pub and Canton Inn. We’ve taken a couple other trips to celebrate over the years, just not on our anniversary date. We spent one cold weekend in Madison, WI, to see the Avett Brothers, and another warmer weekend in July to see the same band at Red Rocks in Colorado.<br />
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It’s kind of funny that we had trouble remembering what we did on our anniversary the previous nine years. And we didn’t always celebrate on the exact day. But we always make time to celebrate both our love and our marriage.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdD3YIvJasbFce9ZxLeyh3bZG_GkxtV4cVA8yuAhyphenhyphenVRKUv_lV3scrQmgFXgkSWY7a1yuXKN2JSThSGarpzP-fuISYR2JOXPQ4oSmJ1Lj1vH_QevDAs6taTy4lAhomMWEba5-piKtgUKfg5/s1600/52932095_2079595485443376_2802643465479913472_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdD3YIvJasbFce9ZxLeyh3bZG_GkxtV4cVA8yuAhyphenhyphenVRKUv_lV3scrQmgFXgkSWY7a1yuXKN2JSThSGarpzP-fuISYR2JOXPQ4oSmJ1Lj1vH_QevDAs6taTy4lAhomMWEba5-piKtgUKfg5/s320/52932095_2079595485443376_2802643465479913472_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Having some Italian gelato before heading home.</td></tr>
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When we returned to our hotel room after dinner at the Grand Floridian, we watched a video of our wedding highlights on Facebook posted by Video Edited Memories. The video included our vows, “in good times and bad, for richer, for poorer, in sickness and in health.” I can’t say that when anyone ever gets married they feel like there will be bad times. I just remember being so incredibly happy that day, thinking that marriage would be like all those romantic comedies I watched all those years.<br />
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Marriage is definitely not the simple “happily ever after” portrayed in all those movies. Marriage means compromise (which is always hard). It means being there for the other person when he or she is having one of those bad times. And it means always remembering why you fell in love in the first place. <br />
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So, here’s to the next ten years of marriage, and the next 20 after that. I can’t wait to see what adventures await us.<br />
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mlhagracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-37978249604806305942019-02-25T20:27:00.002-08:002019-02-25T20:28:55.237-08:00Appointments and Adventures<div class="p1">
Auguste Rodin said, "nothing is a waste of time if you use the experience wisely."</div>
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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.</div>
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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.</div>
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<tr><td class="tr-caption" style="text-align: center;">I have always loved this butterfly at Children's Hospital. Just reminds me of hope.</td></tr>
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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.</div>
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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!</div>
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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.</div>
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<tr><td class="tr-caption" style="text-align: center;">Delicious lunch at Pappy's Smokehouse.</td></tr>
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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. </div>
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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!</div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-142842751108684042019-02-24T21:57:00.001-08:002019-02-24T21:57:26.165-08:00A Stately Experience<div class="p1">
It was certainly a stately occasion that we found ourselves in Bloomington this weekend for the IHSA girls state basketball tournament. </div>
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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.</div>
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<tr><td class="tr-caption" style="text-align: center;">Lunch at D'Arcy's Pub to start our adventure.</td></tr>
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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.</div>
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<tr><td class="tr-caption" style="text-align: center;">Resting up for the big game.</td></tr>
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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.</div>
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<tr><td class="tr-caption" style="text-align: center;">Hanging out at the semi-final state game.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglgIEiMVZqwVfFTRhEC7hjPIBOK8djGi62rCLp8FYAkUVK_MKQRPy48gwFmr7H2DcY7Z7jufHbic1zllggzM1lIPhNKr7klLDj3BHbO5Ctrp44tMr3rA-meN27NsSELbig2EK4CPfQAAD7/s1600/52743981_2345616199001898_5159413280606781440_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglgIEiMVZqwVfFTRhEC7hjPIBOK8djGi62rCLp8FYAkUVK_MKQRPy48gwFmr7H2DcY7Z7jufHbic1zllggzM1lIPhNKr7klLDj3BHbO5Ctrp44tMr3rA-meN27NsSELbig2EK4CPfQAAD7/s320/52743981_2345616199001898_5159413280606781440_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kyle took this photo from the floor.</td></tr>
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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! </div>
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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!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV2mSNFZVie8KWCNZzMpv5mUSEaZ52VBjsFtM7EIcUUwFkzjo3V0xstQCrBpVEhziSRsC3h7aWmDcVTUaUh8sDQg4T4nyUjt5mY1AwJIRG92nUhjqAiDeoEcp_eTgUpbpX01CrOQV_Uqzk/s1600/52810383_10213292437279802_1012552245272641536_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhV2mSNFZVie8KWCNZzMpv5mUSEaZ52VBjsFtM7EIcUUwFkzjo3V0xstQCrBpVEhziSRsC3h7aWmDcVTUaUh8sDQg4T4nyUjt5mY1AwJIRG92nUhjqAiDeoEcp_eTgUpbpX01CrOQV_Uqzk/s320/52810383_10213292437279802_1012552245272641536_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Swimming at the hotel.</td></tr>
</tbody></table>
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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!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ8bWD71aswJIP6V9sBW7qQ4Z0sXuf1TgAGOJ7QfUZttAsiV-pVu_CW7dZF4yUIu_bUoANHEAXfc7GXLaQRkLMi70S9BYKSo_ZlpKPVJh4kK8D3QTjaesd6v5RjG8Kw8IVwoJMiZauUVuj/s1600/52596239_2346132542283597_5693091867969716224_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQ8bWD71aswJIP6V9sBW7qQ4Z0sXuf1TgAGOJ7QfUZttAsiV-pVu_CW7dZF4yUIu_bUoANHEAXfc7GXLaQRkLMi70S9BYKSo_ZlpKPVJh4kK8D3QTjaesd6v5RjG8Kw8IVwoJMiZauUVuj/s320/52596239_2346132542283597_5693091867969716224_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging out at the Discovery Children's Museum.</td></tr>
</tbody></table>
<div class="p1">
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.</div>
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<div class="p1">
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!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI18MNIK3jkOWcSdF3kuGR4-d9uh-GlkkJlYoo9cmUlcfEkc6pQ76zSlEORPB_-TRIxcBof2YQqq0auNPpbeVeYqwL3LyYo80ahVTeS4pV0i4wDAzAFJkHPERSgJpq54LIb4Pz_5CBvnPQ/s1600/52769513_2346148285615356_6169135357179723776_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiI18MNIK3jkOWcSdF3kuGR4-d9uh-GlkkJlYoo9cmUlcfEkc6pQ76zSlEORPB_-TRIxcBof2YQqq0auNPpbeVeYqwL3LyYo80ahVTeS4pV0i4wDAzAFJkHPERSgJpq54LIb4Pz_5CBvnPQ/s320/52769513_2346148285615356_6169135357179723776_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just the girls hanging out at the third place state game!</td></tr>
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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.</div>
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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.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuMaqeBsxro12Hgh5eKmgGlNQIoPHVR1SKX2P8gWnSAFRhOB1NxwA9EXjYp1iIU-xPzZKwkJeR1RrYPr59VEo5TqZYRPgDpEIx-JSzmNzmurXF_SNGYntzqdaFOKGoWWq1ZTcZnIRRVaGX/s1600/53110814_2346244185605766_4051720122383990784_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhuMaqeBsxro12Hgh5eKmgGlNQIoPHVR1SKX2P8gWnSAFRhOB1NxwA9EXjYp1iIU-xPzZKwkJeR1RrYPr59VEo5TqZYRPgDpEIx-JSzmNzmurXF_SNGYntzqdaFOKGoWWq1ZTcZnIRRVaGX/s320/53110814_2346244185605766_4051720122383990784_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dinner at the world-famous Portillo's before heading home.</td></tr>
</tbody></table>
<div class="p1">
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.</div>
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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.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgDzWo8DCfxRlAxtRQNJQ_XW0hPZsgbFBBsXRjCSwJNJ4OeuU9i2uDeoBZyA5fNOpAfMLeCnDNrPx0tMLDMYQWfpzwz-ZplKyh-R1OgtHhNgnMXzkoxCSwhj1GzrKgtR5P1Qti0JE9xr9H/s1600/52846304_2346728402224011_1118907773099180032_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgDzWo8DCfxRlAxtRQNJQ_XW0hPZsgbFBBsXRjCSwJNJ4OeuU9i2uDeoBZyA5fNOpAfMLeCnDNrPx0tMLDMYQWfpzwz-ZplKyh-R1OgtHhNgnMXzkoxCSwhj1GzrKgtR5P1Qti0JE9xr9H/s320/52846304_2346728402224011_1118907773099180032_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace was all smiles to meet the senior Lady Toppers at the game!</td></tr>
</tbody></table>
<div class="p2">
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 . . . </div>
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<div class="p1">
mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-33745319255500711932019-02-21T21:15:00.000-08:002019-02-21T21:15:06.664-08:00Remembering Landon<div class="p1">
This week, the world lost another beautiful soul to the devastating disease of INAD.</div>
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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.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOOd9pRi2Yd8mvHjzi10jlELy4FrLUdeGIln4YBtEmnlongJkQEjFFLbjr2EsZpw94mg9aEjFd7gdVmAyl1bPwh8RRDdNVnGoHChMibL3nXU_lOv-ow8w24cua5WbqeqJn6Zou6VQF7AAt/s1600/13435561_1715193205410940_3649158807002832551_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOOd9pRi2Yd8mvHjzi10jlELy4FrLUdeGIln4YBtEmnlongJkQEjFFLbjr2EsZpw94mg9aEjFd7gdVmAyl1bPwh8RRDdNVnGoHChMibL3nXU_lOv-ow8w24cua5WbqeqJn6Zou6VQF7AAt/s320/13435561_1715193205410940_3649158807002832551_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace sent Landon a St. Louis Cardinals Mickey Mouse for his collection.</td></tr>
</tbody></table>
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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.</div>
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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.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6P9ro8pm8wcoOJBeFEukTU5BicarBnkPcgQiccfcuXUd8QjHtNsCh_EQ_fWJtlihDiAYmHIhXJXqJTSs8EYs7jU_f26b5xjx15at2RsjBA2KFhZGPIDANMlVC6qECWB259LDr2PhdSa6N/s1600/16832254_1902875653275957_7213304597242876191_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6P9ro8pm8wcoOJBeFEukTU5BicarBnkPcgQiccfcuXUd8QjHtNsCh_EQ_fWJtlihDiAYmHIhXJXqJTSs8EYs7jU_f26b5xjx15at2RsjBA2KFhZGPIDANMlVC6qECWB259LDr2PhdSa6N/s320/16832254_1902875653275957_7213304597242876191_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Landon sent Grace some Mickey pajamas for her birthday one year!</td></tr>
</tbody></table>
<div class="p1">
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.</div>
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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. </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEQEsfWf5xeQZUIMioORN2GC9JV_AbXi_o9GzQhE0yJzgB7VwVcS_ALXN7JE5-In7Np1rtDAqzEDgOecq1X80MbcN44fH43hl_O9PAxMH77ABqkkcOhiwtMqV6bb_c2aZarCd6Du0OjMcn/s1600/16711947_1829126934017566_4765828712731843104_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEQEsfWf5xeQZUIMioORN2GC9JV_AbXi_o9GzQhE0yJzgB7VwVcS_ALXN7JE5-In7Np1rtDAqzEDgOecq1X80MbcN44fH43hl_O9PAxMH77ABqkkcOhiwtMqV6bb_c2aZarCd6Du0OjMcn/s320/16711947_1829126934017566_4765828712731843104_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace also sent Landon a pirate Mickey Mouse for his collection.</td></tr>
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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. </div>
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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.</div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-57622741090632153282019-02-19T21:32:00.002-08:002019-02-19T21:32:16.848-08:00A New Beginning<div class="p1">
Just before we left, the director of the first-ever clinical trial said she thought we should take a picture with Grace of the momentous occasion that she tried her first does of RT001. And of course, that was right up our alley, so we grabbed Flat Gracie and posed for a photo.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQr95X-pWYYylFAhiqcKi85gbmhs2W7hkMe79J0fIP6SGGdT9jNoco7M7z5xnWAhM4aKAenZ1ibNX0oTSyIPvz8VBtpGnFNaP0COkj3oegGWQS0U8GWE9jTdl6AAe0GoFTcU9zF2l445Ia/s1600/52528675_2343021092594742_2892493129045245952_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQr95X-pWYYylFAhiqcKi85gbmhs2W7hkMe79J0fIP6SGGdT9jNoco7M7z5xnWAhM4aKAenZ1ibNX0oTSyIPvz8VBtpGnFNaP0COkj3oegGWQS0U8GWE9jTdl6AAe0GoFTcU9zF2l445Ia/s320/52528675_2343021092594742_2892493129045245952_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Getting ready to fly to New Jersey.</td></tr>
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In some ways, it marked the end of what seemed like very long journey. We first learned about Retrotope and their experimental drug, RT001, more than a year ago, when they published a press release online that there were two INAD patients taking the drug as part of a compassionate use program. The drug company has claimed that the drug is able to stop or at least slow the progression of INAD and can also help to reacquire lost skills. We immediately contacted the company, and discovered they were hoping to do a clinical trial for the drug in INAD patients, and that Grace would likely be a candidate.</div>
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At the time, they told us the trial could start as early as March of next year. We learned that things like this often times take much longer than we would like. When it didn't start in March, we heard July or August, then October, and we got a call after the first of this year that Grace would be able to travel to New Jersey and participate in the clinical trial.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEuzlaCFEfIfhRuqPmHF2B3wBmA-0fz1V7TXkcsk4u2f6vC-5MweOuURXk4A9jhAD2UOUcnbSaMx7xZyocXSUsTRAuueo9LrBWkWeZqW059O8w2PCHcSAYOHeP91d7CKtUn4RxDm37408H/s1600/52755214_2343537905876394_3977623763205226496_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEuzlaCFEfIfhRuqPmHF2B3wBmA-0fz1V7TXkcsk4u2f6vC-5MweOuURXk4A9jhAD2UOUcnbSaMx7xZyocXSUsTRAuueo9LrBWkWeZqW059O8w2PCHcSAYOHeP91d7CKtUn4RxDm37408H/s320/52755214_2343537905876394_3977623763205226496_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace shortly after taking her first dose of RT001</td></tr>
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<div class="p1">
Kyle and I have spent months and months debating whether or not to enroll Grace in the trial. At seven and a half years old, she's the oldest patient they have right now, and the cut-off age for participation is ten. We know this drug is not a cure, and that the positive effects we see may be minimal. But you never, ever know how something is going to play out, and we wanted Grace to have a chance to try this new drug. We also wanted to be able to further INAD research, and since we didn't feel the drug would have any harmful side effects to her, we finally decided to go for it.</div>
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In January, we made a week long trek to New Jersey, driving the 13 hours and taking Grace to three days of baseline appointments. It was a long week for sure, but we learned a lot, and we are so grateful that Grace is a good traveler and we met lots of nice people.</div>
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I think the hardest part of participating in the trial is that we had to return to New Jersey in two weeks to 45 days after those initial tests so Grace could have another baseline assessment and officially start the use of RT001. This visit was likely to last only part of a morning, so instead of driving the 900 miles, we opted to fly and do the trip in two days.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYo389lXWi2_5Amnfp7tgxhWhKyKMHJCzgrl8nmet23_COO4vxSdyhHFdRRlPrWfVciZezJwgCG4mwLOy-N6Upbk96HRv5bvBu7-6qWL6SuxMdQHzp7nVDzTxS43r8E0VvznDNY2qOjNRB/s1600/52363075_2343537919209726_1377325492759166976_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYo389lXWi2_5Amnfp7tgxhWhKyKMHJCzgrl8nmet23_COO4vxSdyhHFdRRlPrWfVciZezJwgCG4mwLOy-N6Upbk96HRv5bvBu7-6qWL6SuxMdQHzp7nVDzTxS43r8E0VvznDNY2qOjNRB/s320/52363075_2343537919209726_1377325492759166976_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Checking out the New York City skyline!</td></tr>
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We haven't flown with Grace in nearly a year and a half, and both of us were a little worried about how it would play out. Since Grace can't sit up or hold her head up, it makes it tricky to sit her in her own seat buckled up for the take off, and the last time we flew with her, the airline broke her medical stroller.</div>
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But we pushed those worries aside (mostly), and decided it was the best decision since our trip was so short. And we couldn't be more pleased with the way everyone took care of us. When I texted that to Kyle's mom on the way home, she wrote back that Grace just seems to bring that out in people, and I couldn't agree more. We flew Southwest, where everyone took amazing care of us. From checking us in and setting us up for pre-boarding to making sure we had everything we needed, we were very comfortable on both flights. Grace was even able to sleep across my lap. We rented a minivan from Enterprise, which was also a wonderful experience and drove it to our favorite Hampton Inn in Denville, where the night clerk offered to say a special prayer for Grace during his morning devotional. We are continually blessed by so many that happen across our paths on this Grace-Filled Journey.</div>
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This morning, Grace had another baseline assessment, and they showed us how we can administer the drug to her each day. It's a little overwhelming. Clinical trials require a lot of data and record-keeping (and I can't say those things fall in my strong suit). But we are excited that she finally had a chance to try the drug that has helped some INAD kiddos.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPfzPnwhe2rsTjkMtiwar2cYXMjYSafsVQ7iE9KkiFqQDU8vYbfpzwb04LfXLIXKiBaIczdPlx2eMHNkDebUn-U6bA1lEhvXoIKSu7Dr2iZRlfU0m7PX3GXZOOrh0S6LRRNGYMkYtAW1LC/s1600/52830931_2343537935876391_7241621289792700416_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPfzPnwhe2rsTjkMtiwar2cYXMjYSafsVQ7iE9KkiFqQDU8vYbfpzwb04LfXLIXKiBaIczdPlx2eMHNkDebUn-U6bA1lEhvXoIKSu7Dr2iZRlfU0m7PX3GXZOOrh0S6LRRNGYMkYtAW1LC/s320/52830931_2343537935876391_7241621289792700416_n.jpg" width="254" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A view of Lady Liberty.</td></tr>
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I am SO proud of Grace for being part of this initial clinical trial. She has been so strong and brave through each and every exam, each and every assessment and even trying the medicine this morning. She never complains and always has a smile for everyone we encounter. She reminds us that life is always to be celebrated and to life each and every moment to the fullest. Oh, and that a smile can brighten everyone's day.</div>
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Before we headed for home, we had a little time to kill before we got to the airport. As he was driving, Kyle saw a sign for Liberty State Park with viewings of Ellis Island and the Statue of Liberty. How could we pass up an opportunity to take in such great sights? Although it was too cold to take Grace on a ferry ride to see the statue up close, we walked around and looked at the New York City skyline and stopped to see Lady Liberty. What better place to start a new adventure than at a place that marked one of the beginnings of our country.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdzQzT_aFQfxCTOh8tVOxjPr8yr4_26DTjhYuqGodFeRkzWo1lxlR2h6u6bu4JmYCSnrMbp3sZo6RkCukL6vPDI2YAIpgYMH2QSLeOHXt7WuP2f0Iwn1v1isVVSwTfe0s7eHldUdvCCJH/s1600/52859678_2343537949209723_2833856341439676416_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicdzQzT_aFQfxCTOh8tVOxjPr8yr4_26DTjhYuqGodFeRkzWo1lxlR2h6u6bu4JmYCSnrMbp3sZo6RkCukL6vPDI2YAIpgYMH2QSLeOHXt7WuP2f0Iwn1v1isVVSwTfe0s7eHldUdvCCJH/s320/52859678_2343537949209723_2833856341439676416_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ellis Island and the Statue of Liberty.</td></tr>
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<div class="p1">
So, in a way, Grace getting to try the drug marked the end of a long journey, it also marked a new beginning. Over the course of the next year, we will continue to record when she takes the drug and any progress she makes along the way. We also have two more trips to New Jersey at the six-month mark and the one-year mark to assess any improvements or changes. Next time we go, we hope to take Charley with us and do a little sight-seeing in the area.</div>
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We won't know for awhile if RT001 will make any difference for Grace. Maybe it helps her a little, and maybe it doesn't. But we know that it's a chance we took to give Grace every single chance there is. And we are SO grateful to each and every person who helped us along the way on this amazing Grace-Filled Journey.</div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-75043468059512414422019-02-17T21:16:00.001-08:002019-02-17T21:16:06.189-08:00Happy 2nd Birthday, Charlotte!<div class="p1">
The day before her second birthday, Charlotte came into our bedroom first thing in the morning, all by herself. It was the first day she had figured out how to crawl out of her crib, and after startling me at first, it was cute to see her so proud of her accomplishment.</div>
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Today, Charlotte Grace Herschelman turns two years old, and it's been immensely fun to watch her accomplish so many things. From her first "da da" to picking out all the characters on the Mickey Mouse Clubhouse, we have loved listening to her learn how to talk. Kyle's favorites are "snicky" instead of "stinky" and "Goosey" instead of "Goofy." I told Kyle that one day I will miss trying to figure out all the things she is trying to say!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNYUND7sZ_cUUxwMK0wbyLinIoDQNfETtlSmpHOxMcpRi_1NleG3zl28l7QGEKA3U56z9cMH1a7VfEYBt_UesQmL3v-6bXBJjQyGm0vYnsU9iOyLbTdmptM-Kz5AOJ2I7YUxv6qk6LWCqO/s1600/52025801_305550156978198_3954846542317223936_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhNYUND7sZ_cUUxwMK0wbyLinIoDQNfETtlSmpHOxMcpRi_1NleG3zl28l7QGEKA3U56z9cMH1a7VfEYBt_UesQmL3v-6bXBJjQyGm0vYnsU9iOyLbTdmptM-Kz5AOJ2I7YUxv6qk6LWCqO/s320/52025801_305550156978198_3954846542317223936_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">February 2019</td></tr>
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She's also mastered so many other skills in her first two years, walking and then running, picking out her favorite toys to play with and giving hugs and kisses. Most of the time, Kyle and I just sit and watch her play, in awe of all the things she learns each and every day.</div>
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In some ways, as excited as we are that Charlotte is meeting all these milestones, it's a bit bittersweet at times. Charlotte has already far surpassed any of the skills Grace ever had when she was younger. Grace had a handful of words (my favorite was always "ma ma") and she knew all her animal sounds. She was able to cruise the furniture for a time and walk in a reverse walker, but she was never able to walk on her own. And that's just the tip of the iceberg. INAD has stolen so many things from her that she's not even able to sit up on her own anymore.</div>
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But INAD hasn't stolen her ability to smile, and when she smiles at Charlotte, it seems that my world is complete.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikoI_zmIMjkhAcA6t1pVx5Inj8acw1zHx6PTCcHzYE45WU7KdhXWumehBX-PY-WKH8pyScEkvxHLNq4UzVA6cOW1rkiAA1ZWIKWg72iby5X5z4QKNLdMFKoshgJZ13An5ANttI421HIO7j/s1600/27973275_2085286821701505_4939883688694607370_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikoI_zmIMjkhAcA6t1pVx5Inj8acw1zHx6PTCcHzYE45WU7KdhXWumehBX-PY-WKH8pyScEkvxHLNq4UzVA6cOW1rkiAA1ZWIKWg72iby5X5z4QKNLdMFKoshgJZ13An5ANttI421HIO7j/s320/27973275_2085286821701505_4939883688694607370_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">February 2018</td></tr>
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I never had a sister, but I have always heard about the special bond between sisters. And it would seem that Charlotte and Grace have formed that bond already. Just yesterday, Charlotte crawled up on top of Grace just to give her a hug and a kiss. It was about the sweetest thing. Charlotte loves talking to Grace, and in true big sister fashion, Grace laughs anytime Charlotte gets scolded for something. That little bit of normalcy never ceases to make me smile.</div>
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Accepting that Grace has INAD means accepting that our dreams for Grace's future have changed. When Grace was a baby, we wondered what she would like to do when she got bigger. She always loved playing with soccer balls, and we thought she might like sports. We wondered if she would like school or become a writer someday like Kyle and I. Sometimes it's hard to accept when dreams change, but we also know that Grace has already made a huge impact in the world.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcMSat50PeMN5eauVEfyjpdTDgoxH9ER-UMqmsk7M3GsFYDfxEx0-FUmZ_VvB3T_Izf_8AD8DE8coFQKcIJwxJhzSgsiTYeIsNVjJmWbEmebXmEpku0PCcIFEmoq4msWj-o-NbPVnLztDS/s1600/16831023_1901374253426097_3317142950570759963_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcMSat50PeMN5eauVEfyjpdTDgoxH9ER-UMqmsk7M3GsFYDfxEx0-FUmZ_VvB3T_Izf_8AD8DE8coFQKcIJwxJhzSgsiTYeIsNVjJmWbEmebXmEpku0PCcIFEmoq4msWj-o-NbPVnLztDS/s320/16831023_1901374253426097_3317142950570759963_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">February 2017</td></tr>
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The birth of Charlotte two years ago brought up all those same types of questions. We wondered what she will be like someday. Will she be the head of her class or the star of the basketball team? Will she want to join 4H or Girl Scouts? If the past two years are any indication of her determination and perseverance, I would say Charlotte will be able to do anything she puts her mind to. And I'm okay with that. I've also seen her compassion and empathy for her sister, and it's my hope that whatever she decides to do in this world someday, that she does it with kindness. That would be my greatest dream for her.</div>
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The past two years have flown by so quickly, and it seems like Charlotte has already been part of our family forever. We continue to be blessed by her spunky attitude and caring heart. We can't wait to see what the future holds for her.</div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-79187824990386752982019-02-16T21:30:00.005-08:002019-02-16T21:30:47.506-08:00Brighten Up Rare Disease Day<div class="p1">
This year, on the last day of February, Kyle and I will celebrate being married for ten years. And while Feb. 28 will always be a special day to us, when Grace was diagnosed with iNAD, it became special for another reason.</div>
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The National Organization of Rare Diseases marks Feb. 28 as Rare Disease Day. The main objective is to raise more awareness for all types of rare diseases all over the world. Why is this so important? Because according to the Rare Disease Day website, one in every 20 people will live with a rare disease at some point in his or her life. And many times there is no cure for these rare diseases that often times go undiagnosed.</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr1Ye1mnqHsWYRlr-6C9et02iqTr-3U6SNdTjxEPeof1z7Jk0f_53ItZ4tv9LA8TVfAgfxrFihGByA51okn-o9Uf74YlggFM28Sr-iCiPWX1bkJu9KmKTT5ahv3GJv7mVctX3bTj94Ni-S/s1600/49854787_2823586400988506_5998701116320120832_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgr1Ye1mnqHsWYRlr-6C9et02iqTr-3U6SNdTjxEPeof1z7Jk0f_53ItZ4tv9LA8TVfAgfxrFihGByA51okn-o9Uf74YlggFM28Sr-iCiPWX1bkJu9KmKTT5ahv3GJv7mVctX3bTj94Ni-S/s320/49854787_2823586400988506_5998701116320120832_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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This is our fifth Rare Disease Day since Grace has been diagnosed with INAD. And we've done a variety of different things over the years, sharing photos and videos to social media and working to get our awesome communities involved in our efforts.</div>
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Last year, we launched a Beat INAD coloring page that Kyle and I designed. We offered the coloring sheet to schools, and we were overwhelmed to see all the coloring pages all across the county. Kids and grown-ups alike shared their artwork helping us to raise more awareness for INAD.</div>
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And last year's coloring page was neat, but this year, we were blessed to have graphic designer Danielle Seago of Doodlebug doodle an awesome coloring sheet for us with the Princess Grace logo. Seriously, it's awesome, and you won't want to miss a chance to color yours. Special thanks to Danielle for donating her time to our project, and you can support her work by purchasing some of her children's books on Amazon (Marvelous and Kind Kloey and Faith Over Fear). </div>
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We hope that everyone loves the new coloring sheet as much as we do. We will include a copy on our Facebook page that can be downloaded and would be more than happy to email a copy to anyone interested. Feel free to share the coloring sheets with anyone you think who would like to help us raise awareness, and make sure you share the finished product with us on Facebook, Twitter or Instagram.</div>
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And don't forget that Rare Disease Day is Feb. 28. Every single person can make a difference in the life of someone with a rare disease.</div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-43456384926040431552019-02-12T20:10:00.001-08:002019-02-12T20:10:13.592-08:00The Grace Race Is Back<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">It’s official! Thanks to a vote by the Hillsboro City Council tonight, the next Grace Race is officially on the books for Saturday, Aug. 31, 2019! And we hope you will mark our calendars to join us and help us once again raise much-needed funding for INAD research!</span></span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOxYtN6SbqofYc2Sl5biWECeYqYW-8vINVHhyphenhyphen4sX9SfVMEL6zqbvl4Z6_AIjutA1AOBXb_DfsmRTg0nqyd1d7_-NdcQEKdrzs7gsj1BddFYQGVmFBkK2-JKiw5e4UhSwJE0_8SxBw7nx12/s1600/51794291_320468925242289_3932612763641184256_n.jpg" imageanchor="1" style="background-color: #fff2cc; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOxYtN6SbqofYc2Sl5biWECeYqYW-8vINVHhyphenhyphen4sX9SfVMEL6zqbvl4Z6_AIjutA1AOBXb_DfsmRTg0nqyd1d7_-NdcQEKdrzs7gsj1BddFYQGVmFBkK2-JKiw5e4UhSwJE0_8SxBw7nx12/s320/51794291_320468925242289_3932612763641184256_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: #fff2cc;">Grace hopes you will join us for the Grace Race on Aug. 31!</span></td></tr>
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<span style="background-color: #fff2cc; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">Plans are still being made for this year’s event, but it’s always such a blessing and encouragement to us to see so many of our friends, family and our community step off the race line for Grace. And while we truly wish Grace could be taking those steps herself, we are so honored and humbled for all those who run and walk in her honor.</span><br />
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<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">The first A Grace-Filled Journey 5K and one-mile fun run event was held in 2015, less than one year after we learned Grace had INAD. It was an idea by my brother and his wife, who are both active runners. I always tell people if they see me running, they should probably run too because it means something is chasing me!</span></span><br />
<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;"><br /></span></span>
<span style="background-color: #fff2cc; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">But not John and Emily. They run nearly all the time, like even when they are home over Christmas break! And in the first year after Grace was diagnosed with INAD, Johnny pledged to run 1,000 miles in her honor that year. That would be the year he ran his first marathon, and he attached her photo to his race bib and wrote her name on his shoes, with a note that read he ran in her honor because he knew one day she would be able to run with him.</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Ava1PI9Ua0a-4k6DtO0WbMa99pcdsBoFpMgh6LduWV_GX_TPihp7lv4oEuK27HDK0tGFjfU7jbAXKWo1QmqnIFTl5RAJfVsdGR_cHIvqhUGvnJ3ouaJ5NePSs29MXfumN8JVotIrrYJR/s1600/5472827732f82.image.jpg" imageanchor="1" style="background-color: #fff2cc; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_Ava1PI9Ua0a-4k6DtO0WbMa99pcdsBoFpMgh6LduWV_GX_TPihp7lv4oEuK27HDK0tGFjfU7jbAXKWo1QmqnIFTl5RAJfVsdGR_cHIvqhUGvnJ3ouaJ5NePSs29MXfumN8JVotIrrYJR/s320/5472827732f82.image.jpg" width="228" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: #fff2cc;">Johnny's shoes and race bib from his first marathon.</span></td></tr>
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<span style="background-color: #fff2cc; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">We know now that Grace is unlikely to ever take steps in a marathon, 5K race or even walk to school, but we continue to be blessed by all those who take steps in her honor each and every single day, by sharing her story and helping us to raise awareness for INAD.</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7vWQ5WtJS_tgcykL9VnsJmdWqc4f5WDwKHe_GcUyWmDJ1Ch4pdlbUvTb_VeUzVAGcMAFErG2CyyXcENA09oVNSt1N4BVK8VD_ywSNJbfM5gImW4CdGyOPNimUt9H-bgPwh2m3c6kG1sKf/s1600/51729507_601492010293804_5287065957821317120_n.jpg" imageanchor="1" style="background-color: #fff2cc; margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7vWQ5WtJS_tgcykL9VnsJmdWqc4f5WDwKHe_GcUyWmDJ1Ch4pdlbUvTb_VeUzVAGcMAFErG2CyyXcENA09oVNSt1N4BVK8VD_ywSNJbfM5gImW4CdGyOPNimUt9H-bgPwh2m3c6kG1sKf/s320/51729507_601492010293804_5287065957821317120_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: #fff2cc;">This is the text he sent me on the day of his first marathon.</span></td></tr>
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<span style="background-color: #fff2cc; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;"><br /></span>
<span style="background-color: #fff2cc; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">There were over 650 people who participated in that first Grace Race, including more than 150 who ran virtually in other parts of the country and the world. Big props to Kylie Walch for running her 5K in Myanmar and Kyle Stewart for making his trek in London, England. </span><br />
<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;"><br /></span></span>
<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">Then we skipped a year before planning the next Grace Race, and the second edition was held in 2017. At six months old, it marked Charlotte’s first Grace Race, and she nearly slept through the entire thing. Which is okay, because Grace slept through her entire birthday party that followed.</span></span><br />
<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;"><br /></span></span>
<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">This time, we set a goal to have virtual runners in all 50 states, and thanks to our very dedicated friends and family, we made that goal too! That day, there was someone running or walking a 5K in Grace’s honor in each and every state in the country. We absolutely loved seeing all the photos on Facebook and Instagram. </span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi8-0erxfXS7GQW8CkwEVpOak8c2OWQqwGDGxe8YpF1efU3_idxPBcttP2T33sJCwutXuUwmJHPz2LuebOOXUSiiD5XuBtCwXoXsDGtGMWMI4yPU_5KVvlmwUSNGgnZl3hHtCJ02TEOFD6/s1600/51934338_688153588266475_6497193265714954240_n.jpg" imageanchor="1" style="background-color: #fff2cc; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgi8-0erxfXS7GQW8CkwEVpOak8c2OWQqwGDGxe8YpF1efU3_idxPBcttP2T33sJCwutXuUwmJHPz2LuebOOXUSiiD5XuBtCwXoXsDGtGMWMI4yPU_5KVvlmwUSNGgnZl3hHtCJ02TEOFD6/s320/51934338_688153588266475_6497193265714954240_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: #fff2cc;">Johnny gave Grace his first medal from the Marine Corps marathon.</span></td></tr>
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<span style="background-color: #fff2cc; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">Add that to the more than 500 runners and walkers who made it to Hillsboro, and we consider ourselves truly blessed to have so many wonderful people on our Grace-Filled Journey. </span><br />
<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;"><br /></span></span>
<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">The day always turns out to be a blur for us, but special thanks to our friend, James Ryan of NokoPhoto for taking photos at both races for us to enjoy in the days and weeks that follow the race. Watching the smiles of runners and walkers of all ages cross that balloon-archway finish line never fails to bring a big smile to my face.</span></span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaClTaxc7hmvKPwDmnlK7QDQfL1MmEcWNfLICl_IikJ_MjwWLcl_gnd9jZSdOXCY4zHivE9eZoGu7XNW-dTgvYBTIMQQ_mxDS_Roo7NsuEEYhqYoiyKDSMZNNmBud8H_HQr43ftCjh3ehp/s1600/21272123_10209968124854069_516939847128690627_n.jpg" imageanchor="1" style="background-color: #fff2cc; margin-left: auto; margin-right: auto;"><img border="0" height="281" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaClTaxc7hmvKPwDmnlK7QDQfL1MmEcWNfLICl_IikJ_MjwWLcl_gnd9jZSdOXCY4zHivE9eZoGu7XNW-dTgvYBTIMQQ_mxDS_Roo7NsuEEYhqYoiyKDSMZNNmBud8H_HQr43ftCjh3ehp/s320/21272123_10209968124854069_516939847128690627_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="background-color: #fff2cc;">The second Grace Race brought in $25,000 for Dr. Paul Kotzbauer's research.</span></td></tr>
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<span style="background-color: #fff2cc; font-family: 'Helvetica Neue', Helvetica, Arial, sans-serif; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">We’re not exactly sure all the details of what this year’s race will bring, but you can bet it will be a special day for our family. And we hope you will save the date of Saturday, Aug. 31 and join us in Hillsboro or run in Grace’s honor wherever you are. I guarantee you won’t regret it.</span><br />
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<span style="font-family: Helvetica Neue, Helvetica, Arial, sans-serif;"><span style="background-color: #fff2cc; font-size: 14px; line-height: 17.92px; white-space: pre-wrap;">mlh</span></span>agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-39150294271001773892019-02-11T22:01:00.000-08:002019-02-11T22:03:06.976-08:00We Solemnly Swear . . . We Love To Read<div class="p1">
I have been a fan of Harry Potter for nearly 20 years. Just before I left for a semester abroad in London, my cousin Dru suggested I read Harry Potter and the Sorcerer's Stone. I figured it was a kids' book, and kind of scoffed at the idea. But I read it anyway, and it didn't take me long to be hooked. I poured through the first four books, and could hardly wait for the fifth one to be published. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXL4K1jSHlhS_3CcdKJqUuCJyfr0p1oLTdkPmS5G-cMZi5FNjH59lSdXR6C8p5v3SLpizX8IAUM-fEE5CSl1U5eQzwx_5N7A6Sw_ayzFKbFrLTw6Pw4VbEEesjxXaSiv1RFmRQKfD-PmmO/s1600/51858152_2316413325297117_6324128825537986560_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXL4K1jSHlhS_3CcdKJqUuCJyfr0p1oLTdkPmS5G-cMZi5FNjH59lSdXR6C8p5v3SLpizX8IAUM-fEE5CSl1U5eQzwx_5N7A6Sw_ayzFKbFrLTw6Pw4VbEEesjxXaSiv1RFmRQKfD-PmmO/s320/51858152_2316413325297117_6324128825537986560_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace and her collection of Harry Potter books.</td></tr>
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And now, I've read all the books and seen all the movies. The first movie came out in theaters when I lived in London, and I loved seeing it there with my friends. We even had a chance to meet THE Professor Snape when we met Alan Rickman at the stage door following an old Noel Coward play. </div>
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When Kyle and I first got together, he had never read any of the Harry Potter books and just really didn't have much interest in them. Since Kyle knew how much I loved them, he bought me all the movies for Christmas one year, and even sort-of begrudgingly agreed to watch them with me. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikuvUM-71eCvNQ1GeWGLWOVBK9dzSSWN_5DTPXAkdfJw0YMUYdCmTVgr7TZPv3UIh-7PUA4q29QNV8CJgqUNKLC7TkqrANLcWHTHp5jS2k_4-dMI_wJ3QlWzkC2bCCJL1jeJ5ZknU9j-fP/s1600/12800159_10205974777542882_4035476884263176832_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikuvUM-71eCvNQ1GeWGLWOVBK9dzSSWN_5DTPXAkdfJw0YMUYdCmTVgr7TZPv3UIh-7PUA4q29QNV8CJgqUNKLC7TkqrANLcWHTHp5jS2k_4-dMI_wJ3QlWzkC2bCCJL1jeJ5ZknU9j-fP/s320/12800159_10205974777542882_4035476884263176832_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace has always been all smiles reading Harry Potter. This is when we read the first book.</td></tr>
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Even though we had all the books, I was super excited the year they came out with the first book in an illustrated copy. It's always been kind of hard to find things to buy Grace for Christmas, and I couldn't wait to put that under the tree.</div>
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She was only four, but after the first of the year, she and I set out to embark on the adventures of Harry Potter together. Reading before bedtime was our ritual every night, and I knew she would love all the illustrations.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRsO5vfVX8rZ5Huuycj1qCmc7oTY2U561gaVxqYIMSSJEMenqomzM9VVm13l_tE1Jnx3xc9vyWEQnvyinrY_W4JQSqvQ7mQ18j7mU_s89MxO3fAi6TXjOf1rX7UL2vuJ3b9T7Ak1lzDYl0/s1600/17799243_10208827183491248_5626957407794212371_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRsO5vfVX8rZ5Huuycj1qCmc7oTY2U561gaVxqYIMSSJEMenqomzM9VVm13l_tE1Jnx3xc9vyWEQnvyinrY_W4JQSqvQ7mQ18j7mU_s89MxO3fAi6TXjOf1rX7UL2vuJ3b9T7Ak1lzDYl0/s320/17799243_10208827183491248_5626957407794212371_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It's been fun to read them together as a family.</td></tr>
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A few chapters in, Kyle happened to join us one night. It wasn't really planned, but he sort of discovered that he liked Harry Potter too. Starting that very night, he joined us every night as we read our way through the first Harry Potter book.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuKjn1kivY5YWY5d8aNDz4-UjO_Mrwgr5007K-N5o4n-cwaMThVO11XINds1yjUP6lxzrl_6DfMYafApvuJ-5cgQZEtVaOMoxgKkffUhhUNi_030R_hgt5yKHBP8jQODxViOJAP2FoxoOy/s1600/42234510_1851877201548540_7106697314550415360_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiuKjn1kivY5YWY5d8aNDz4-UjO_Mrwgr5007K-N5o4n-cwaMThVO11XINds1yjUP6lxzrl_6DfMYafApvuJ-5cgQZEtVaOMoxgKkffUhhUNi_030R_hgt5yKHBP8jQODxViOJAP2FoxoOy/s320/42234510_1851877201548540_7106697314550415360_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Family fun reading Harry Potter.</td></tr>
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It was so much fun, that we decided we would just read through the whole series together as a family. And this January, three years later, we finished the last of the books together. With several of the books coming in at over 700 pages, that's a lot of quality family reading time. And we wouldn't trade it for anything!</div>
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I think what has always drawn me to the Harry Potter stories is the fabulous writing, and the recurring theme that bravery and courage can overcome fear. It was fun to read to Grace a story about kids that can do the impossible, knowing that she's doing the impossible each and every day in her fight against INAD.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaoonqBT02AuNE6MV59bjn1kmUmno-_bruvj9ExAujBVivJ9wu_MNw574jieQJQrWotMbq6uD0UShAXbSJRSEkhGtU6fgVJzUI3648zpVIsQAngKEzuUj3MozfPZvxHIlooC82MhKwy9Br/s1600/49947902_10213018857120469_8690754435262971904_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaoonqBT02AuNE6MV59bjn1kmUmno-_bruvj9ExAujBVivJ9wu_MNw574jieQJQrWotMbq6uD0UShAXbSJRSEkhGtU6fgVJzUI3648zpVIsQAngKEzuUj3MozfPZvxHIlooC82MhKwy9Br/s320/49947902_10213018857120469_8690754435262971904_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Finishing the last Harry Potter book in January.</td></tr>
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She will always be the strongest and bravest person I've ever known, and just like the characters in Harry Potter, she constantly helps others to find their strengths and overcome their fears.</div>
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While Grace may never get to embark on her own adventures to Hogwarts, I'll always be glad that we had a chance to read all the books together as a family. And I can't wait to read them again to Charlotte.</div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-43357951738503129222019-02-05T21:10:00.001-08:002019-02-05T21:10:02.936-08:00A Date With A MouseAfter logging almost 900 miles in the car on Thursday and Friday, you may have thought that another hour drive on Saturday would be the last thing on our agenda. That may have been the case for most Saturdays, but on Feb. 2, we had a date with a mouse. Two of them in fact. And a duck. And some sort of dog-type creature. And lots and lots of princesses.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGcOkz6rb78FgvaZMvXLs9TVe5iOiAXLcW08_cYwlv9bXsw24lHwXZRGProY-1sZF5EsdUotDP70gtLKR8Qq243e7PXjUIXI0tt7GJqHHiewOWdlDHfoP2fUlh6KCvf8R1KzgVN9Ob4hTq/s1600/51074244_10213162530152205_7293671599020965888_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGcOkz6rb78FgvaZMvXLs9TVe5iOiAXLcW08_cYwlv9bXsw24lHwXZRGProY-1sZF5EsdUotDP70gtLKR8Qq243e7PXjUIXI0tt7GJqHHiewOWdlDHfoP2fUlh6KCvf8R1KzgVN9Ob4hTq/s320/51074244_10213162530152205_7293671599020965888_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Minnie Mouse kisses</td></tr>
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The day after we got home from New Jersey, Mary, Grace, Charlotte and I hit the road again, this time for St. Louis, where Disney on Ice was invading the Enterprise Center. This plan has been in the works for several months as my sister Mikaela came up with the idea of making it a big family outing as a Christmas present for my mom. All told, there are 14 of us in our immediate family and 12 were able to make the trip. My brother Shane missed due to work, as did my sister-in-law Monica.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtkxUnMKSYFxcwaw5k6Fw97P0G8e8tTnv8BUeGbwoPCmGX_B9P2Rg5d6uXxm23qpGBxCEnuX6s9K7hHBIHqXHzn-Q6zqlH6Cy5zKl3VKUlf9qXwQM0kpeZhyphenhyphenIgI-oWY8G0IuFhAcQcV4he/s1600/51141402_2037429672993291_2657827042388606976_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtkxUnMKSYFxcwaw5k6Fw97P0G8e8tTnv8BUeGbwoPCmGX_B9P2Rg5d6uXxm23qpGBxCEnuX6s9K7hHBIHqXHzn-Q6zqlH6Cy5zKl3VKUlf9qXwQM0kpeZhyphenhyphenIgI-oWY8G0IuFhAcQcV4he/s320/51141402_2037429672993291_2657827042388606976_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Herschelman crew at Disney on Ice</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLoJnI4dkpDew5jIEHqA9MhAEFrvEEhyphenhyphen68qC_tF8vRAzc1hVELxHLytP5wP_aZf1xSG18QCNW4wZM0t-BRzYI_WLMLM1SJnzLvOYV_9kmeUf5z65Evx6ecD8g7qT5loLrKwCWDRNw_AGhk/s1600/51593581_2037429662993292_3368201443302440960_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLoJnI4dkpDew5jIEHqA9MhAEFrvEEhyphenhyphen68qC_tF8vRAzc1hVELxHLytP5wP_aZf1xSG18QCNW4wZM0t-BRzYI_WLMLM1SJnzLvOYV_9kmeUf5z65Evx6ecD8g7qT5loLrKwCWDRNw_AGhk/s320/51593581_2037429662993292_3368201443302440960_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandma Kim and all her grandkids</td></tr>
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While they were definitely missed, it was fun to see my brother Daniel try to run a zone defense against his two boys, Keelen (age three) and Kolston (age 1, going on 21). With Mikaela and her husband Scott's three-year-old Quincy and our own Charley Danger in the mix, that meant four kiddos under four in our group. That's enough to make any superstar parent start pricing one-way trips to the Bahamas.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic5cSVosXcXJ2AZ3MHjoAKSK3U_ctATxsyuYaOtMMrspRFX1MZ8gTQrtzgIYNL79qPod-DY1BwZwNiPRfLSVoZoyxoRdITT4YpX69BU_IiZ3Id38hgPl_wKY-8S6R1kQ90sBEHerHLCZ6m/s1600/51298991_2037433596326232_150528484781850624_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEic5cSVosXcXJ2AZ3MHjoAKSK3U_ctATxsyuYaOtMMrspRFX1MZ8gTQrtzgIYNL79qPod-DY1BwZwNiPRfLSVoZoyxoRdITT4YpX69BU_IiZ3Id38hgPl_wKY-8S6R1kQ90sBEHerHLCZ6m/s320/51298991_2037433596326232_150528484781850624_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charlotte was SO excited to see Mickey and Minnie</td></tr>
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But for my mom, it was almost perfect. With Daniel's crew in Fulton, MO, Mikaela's in Arnold, Mo and us in Hillsboro, it's a rare occasion to have all five grandkids in the same place at the same time. Sure there are some tense moments, like when Charley tries to hug a reluctant Quincy or when one grandkid is getting too much attention from Grandma Kim, but for the most part, it's my mom's idea of heaven. My dad is pretty happy with too I think, or as happy as he ever gets. Those who know my dad know that I'm kidding (kind of).<br />
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<tr><td class="tr-caption" style="text-align: center;">Family photo at Disney on Ice</td></tr>
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The show itself was pretty neat too. Mikaela got us tickets in the wheel chair accessible section so we could keep Grace in her stroller, while the others were just a few rows behind us. All of the kids seemed to really enjoy the music, the skating and the story, but nobody enjoyed seeing Mickey and Minnie more than Charlotte. When they first came out, the Dangerous One screamed in delight, hopped off her mommy's lap and danced and banged on the plastic partition that separated us from the lower deck. Usually that plastic protects fans from hockey pucks at the Blues games, but in this case it probably kept Charley from charging down the stares and bear hugging the main attractions.<br />
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<tr><td class="tr-caption" style="text-align: center;">The kids loved hanging out at Grace Meat+Three</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBhTNQjrnGgrmja2LPQAS9gov5k5-TxuVMg4BNEMEB2tOOX1b-ztuFcaMV7HQsSA2TE_AOIFwbKqCDHvYj94lIHhZB8xzLSndWKI9vhx7W2iLGtPgYW8qbKzyTvqugMe5vzXAW7zfuCz8A/s1600/51114382_2037429719659953_5444383935494619136_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBhTNQjrnGgrmja2LPQAS9gov5k5-TxuVMg4BNEMEB2tOOX1b-ztuFcaMV7HQsSA2TE_AOIFwbKqCDHvYj94lIHhZB8xzLSndWKI9vhx7W2iLGtPgYW8qbKzyTvqugMe5vzXAW7zfuCz8A/s320/51114382_2037429719659953_5444383935494619136_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just chilling at Grace Meat+Three</td></tr>
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After the show, we decided to have dinner at one of our favorite places in the world, Grace Meat+3. We weren't the only ones with that thought apparently as the restaurant was hopping. Even with the big crowd, our buddy and Grace Meat+3's owner Rick Lewis got us a spot at one of our favorite tables. The food was fantastic as always, with the kiddos going with grilled cheese and mac and cheese, while the adults tackled everything from fried chicken to prime rib to catfish to Mary's personal favorite, "The Grace Burger". Daniel went with the hot chicken po' boy, which proceeded to melt his face off. But in a good way of course.<br />
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Once dinner was done, we packed up and headed our separate ways. It was a really cool night and one I know my mom won't forget anytime soon. We are so glad that we were able to experience it with Grace and Charlotte.<br />
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krhagracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-52038928957010386672019-02-01T21:21:00.005-08:002019-02-01T21:21:51.245-08:00Taking A Chance On Grace<br />
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Last Sunday afternoon, Kyle, Grace and I embarked on a new adventure on this journey, a trip to Morristown, New Jersey, to take the first step in participating in a clinical trial for a drug called RT0001 with a California-based company called Retrotope. </div>
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<tr><td class="tr-caption" style="text-align: center;">Grace took part in the first-ever clinical trial for INAD.</td></tr>
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It's the first-ever potential treatment for INAD using a D-PUFA (deuterated polyunsaturated fatty acid) that could help to prevent against lipid peroxidation damage and help to restore cellular function. In case you're wondering, I got that from the Retrotope website, and I know about as much as it means as you do.</div>
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<tr><td class="tr-caption" style="text-align: center;">Grace was so brave during three days of testing.</td></tr>
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But in some layman terms, INAD causes a lipid to build up on the end of Grace's nerves in toxic levels. That causes the nerves not to function, and is why Grace can't use her arms or legs. It cause the atrophy of all her nerves, including the optic nerve, which is why she struggles with her vision as well.</div>
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<tr><td class="tr-caption" style="text-align: center;">We made our home away from home in our favorite Hampton Inn.</td></tr>
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The drug, RT0001, is supposed to help break down that build up on the end of Grace's nerves. And as far as we know, doesn't have any harmful side effects.</div>
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So, after months and months of discussion, Kyle and I decided to let Grace be part of the trial in hopes it would help slow the regression of INAD. </div>
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<tr><td class="tr-caption" style="text-align: center;">Charlotte spent the week with Grandma and Grandpa.</td></tr>
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So, that Sunday, we packed the van and loaded up for then nearly 900-mile drive. The first visit would include six testing sessions in various locations, so it was much easier for us to have our van and be able to bring the things Grace would need to be part of the trial. It was definitely a long couple of days, but we are lucky that Grace is such a good traveler. And I'm always grateful that Kyle does most of the driving.</div>
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<tr><td class="tr-caption" style="text-align: center;">We enjoyed FaceTiming with Charlotte while we were gone.</td></tr>
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Our first day in Morristown included some baseline assessment testing, done on video. We provided all of Grace's medical history, including what ages she lost certain skills. I had to get out her baby book to remember a lot of it! But the assessments included things like, could Grace sit up with support, could she try to roll over, could she raise her arms? It was documented on video because they are hopeful that this drug may improve some of those skills. That's not saying that being on this drug will help Grace to roll over, but the drug company can show small results too, things like Grace trying to roll over is an improvement, even if it's only a tiny improvement. </div>
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<tr><td class="tr-caption" style="text-align: center;">We loved meeting other members of the INAD community.</td></tr>
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They also spent a lot of time going over what would be required of us in the coming year as part of the trial. It's going to be tough. There's a daily food journal, video updates and check-ins, as well as additional visits to the site for a repeat of these assessments at six months and at one year.</div>
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<tr><td class="tr-caption" style="text-align: center;">INAD moms have a special bond.</td></tr>
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The other testing included a nerve conduction test, a hearing screening, an EEG, blood work and an eye exam. All of the tests looked at Grace's nerve function. Grace had never had many of these tests done before, and none of them were invasive or hurt her. Kyle and I asked lots of questions throughout about each of the exams. Those exams will all be repeated in six months to see if the nerve function has improved any.</div>
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<tr><td class="tr-caption" style="text-align: center;">One of the fun places we ate was a hibachi restaurant, and Kyle got sushi.</td></tr>
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All of the people helping with the trial have been wonderful to work with. They helped us navigate a tough week, and we will work with them over the course of the next year.</div>
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I think the hardest part of the whole experience was confronting the fact that Grace's nerve function is so poor. I mean, it's not like we didn't already know that Grace had lost most of these skills. But the hearing test showed there was no response from nerves in her ears to her brain stem. The same thing was found with the nerves in her arms and legs. </div>
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Most days, that's not something I think about. Most days, we wake up, do the things we need to do to take care of Grace and try to provide the best life for her. But we don't stop to think about all that's been taken away from her. And for that, I'm grateful. Most days, we simply love Grace and don't worry about INAD, or the fact that it continues to take it's toll on her beautiful body.</div>
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<tr><td class="tr-caption" style="text-align: center;">Home sweet home.</td></tr>
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In the end, I think that's why we agreed to be part of the study, despite the monumental amount of work required to participate in the trial. We want to give Grace every chance there is. And we hope and pray it helps her and all the INAD kids in some way.</div>
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But the trip wasn't all work any no play. We managed to stop at some really fun restaurants along the route. Kyle is always partial to the Pennsylvania-based Primanti Brothers chain, and one night, we visited a Japanese hibachi restaurant for sushi that was so much fun.</div>
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We also had a chance to meet other members of the INAD community, as we had lunch with the Panwala family. Their oldest daughter, Ariya, also has INAD like Grace. Although we are part of an INAD Support Group on Facebook, we've never actually met any other children or parents. It was fun to connect, and we enjoyed the special visit. Also joining us was Barbara, whose grandson, Leo, is affected by INAD. Although it's definitely not a journey anyone would pick, we truly have met some very special people along the way. And for that, we will always be grateful.</div>
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As we crawled into our nice and cozy bed this evening, we are very happy to be home, and excited for this new opportunity. We will take Grace back to New Jersey in February, where she will have a chance to try the drug as well. We're not sure what type of results she will see, but we're so glad to take a chance on Grace. </div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-5379515294953534042019-01-24T14:25:00.001-08:002019-01-24T14:25:53.733-08:00Trial And AdventureWhen Grace was diagnosed with INAD in November 2014, we were devastated to know there was no cure for her condition, even worse there were no treatment options. We were told to continue with therapy and just give Grace the best life that we could. So, we took that to heart and began the long road down A Grace-Filled Journey.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJUQiYJwv0gvoDPVRnmHRqZwbeWxMTIk0Uc2cAWBrbrUWVJVS-dj5mLOS_rIa6sMBH16jbYfRrWieaYVIBv0Wdk_f9y6mznYrikBGNZBwlrgVQPtVaQWasUO-HViTTaBQiP01AkZuPfiXI/s1600/Grace+Bear.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJUQiYJwv0gvoDPVRnmHRqZwbeWxMTIk0Uc2cAWBrbrUWVJVS-dj5mLOS_rIa6sMBH16jbYfRrWieaYVIBv0Wdk_f9y6mznYrikBGNZBwlrgVQPtVaQWasUO-HViTTaBQiP01AkZuPfiXI/s320/Grace+Bear.jpg" width="240" /></a></td></tr>
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Last year, we learned that a new potential treatment had been discovered in the drug, RT0001, by a company in California called Retrotope, who was hoping to start a clinical trial in the next year. It’s been a waiting game as sites worked hard to get set up in New Jersey and in California. And although we submitted Grace’s name to the study, ultimately, it was up to the site doctors to select the patients best suited for the study.<br />
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Earlier this month, we got a phone call from a hospital in New Jersey that Grace was eligible to participate in the first-ever clinical trial for INAD patients. It was officially started in November, and several families had already been enrolled. <br />
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Kyle and I have been talking about the pros and cons of the trial for the past year, and whether or not we would go if Grace had the chance. First off, this drug is not a cure for INAD, not by any means. It’s a drug that could help slow the regression of the disease and possibly help patients gain back some skills lost. Other families who have tried the drug already haven’t noticed life-altering changes, but they have noted more alertness and smiles, among other small changes.<br />
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Ultimately, Kyle and I decided that we wanted Grace to participate. There might only be a small chance that it helps her, but we want Grace to have every chance life has to offer. The study could also be impactful for INAD research down the line, and we want to be a part of that too. And since the drug is a fat, it’s unlikely to have unpleasant side effects for Grace as well.<br />
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This weekend, Kyle, Grace and I will be driving to New Jersey, where Grace will have three days of baseline testing. We return in mid-February, where she will have a chance to start taking the drug. The study ultimately requires two more check-up visits at six months and one year. We ask that you keep us in your thoughts and prayers in the coming week for safe travel, as well as wisdom in making the best decisions we can for Grace.<br />
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We're not sure what adventures await us on our journey, but we feel
very blessed to have this chance for Grace, and we're so grateful to
everyone who shares in our Grace-Filled Journey.<br />
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mlhagracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-60526582399581718932019-01-21T18:42:00.002-08:002019-01-21T18:42:08.888-08:00It's Time For Grace PlatesThey’re baaaack! It’s time again for one of our very favorite INAD fundraisers - temporary Grace license plates! And while Kyle and I still haven’t decided what to get on our vehicles just yet, we can’t wait to see all the fun things people choose.<br /><br />This will be the fourth year the temporary licenses plates for Grace have been available. It was started by Jo Brummet and the Litchfield High School Student Council, leading up each year to the county-wide baseball tournament.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEire4TpnNlvumXpXbQzhUY0XLrbhck4KW3ZoddqegCTfjGfsglyOvlh6gH1Tsm3cqOexqMfycqxmTXgEmhWY7PC5FAXdAN9KK5ceN0Mzsb4fpKgE8SsUpqi1xjsFyQx29OTUrxwTAMr2FGL/s1600/13087401_1763436237219900_6320450691275014381_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="118" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEire4TpnNlvumXpXbQzhUY0XLrbhck4KW3ZoddqegCTfjGfsglyOvlh6gH1Tsm3cqOexqMfycqxmTXgEmhWY7PC5FAXdAN9KK5ceN0Mzsb4fpKgE8SsUpqi1xjsFyQx29OTUrxwTAMr2FGL/s320/13087401_1763436237219900_6320450691275014381_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our first Grace plates said BEAT INAD</td></tr>
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In the past, the license plates have been both white and silver with our favorite princess logo on the left hand side. The first year, Kyle and I chose BEAT for the car and INAD for the van, which looked pretty cool when we parked on Main Street side-by-side. The second year, everyone got a variety of numbers. And last year, we picked TEAM GRCE. We ended up giving one of the TEAM plates to Lincolnwood Athletic Director Josh Stone, who helps to coordinate the TEAM golf outing every year, and we gave one of the GRCE ones to our favorite St. Louis eatery, Grace Meat+Three, where it is hanging on the wall next to a tray signed by Andrew Zimmer. Yup, pretty cool.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQCh044yj2W9bAZweLwZWn_mbhVzo90lxE9Y4XzMmksJ0Y3cMLGpxFXvY_BA13KxrG0rtSw3DIzwx-2hoRoI-8GwVuXM9aoa2itju6gG-OzM3EQ1suXOlie0odeMT829jQAnO96GYmasgq/s1600/25158037_2050499568513564_6344007006889918805_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQCh044yj2W9bAZweLwZWn_mbhVzo90lxE9Y4XzMmksJ0Y3cMLGpxFXvY_BA13KxrG0rtSw3DIzwx-2hoRoI-8GwVuXM9aoa2itju6gG-OzM3EQ1suXOlie0odeMT829jQAnO96GYmasgq/s320/25158037_2050499568513564_6344007006889918805_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grandpa John and Grandma Susie got HOPE on one of their vehicles.</td></tr>
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The fundraiser is pretty simple. Forms are available at both Hillsboro High School and Litchfield High School and The Journal-News office in Hillsboro. Forms are also downloadable, and you can find them on our Facebook page at A Grace-Filled Journey. You fill out the form, and pick out what four letters or numbers you would like on your license plate. The first digit has to be a letter, but the other three can be a combination of letters and numbers.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP7rEDgRHqmNERGLuUZ0PRCO0RwAAZnNHDwH2uIWDooGX4AHh86pfE1f8vHZKRRAAu06J0_ixG82ThFJ3ggg5U4gBiAttUAcVVwsOirgUvwFt6t_Ep9z1JIssXpoyYKVqZcIwMvPpLGaYb/s1600/28336417_2089294674634053_2909397945787655721_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP7rEDgRHqmNERGLuUZ0PRCO0RwAAZnNHDwH2uIWDooGX4AHh86pfE1f8vHZKRRAAu06J0_ixG82ThFJ3ggg5U4gBiAttUAcVVwsOirgUvwFt6t_Ep9z1JIssXpoyYKVqZcIwMvPpLGaYb/s320/28336417_2089294674634053_2909397945787655721_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Last year, we got TEAM GRCE.</td></tr>
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Once you’ve picked out what you want, you make a copy of your driver’s license and registration, and turn it in with the $30 fee. This year, registration forms are due to Jo Brummet at Litchfield High School by Feb. 20. They can also be returned to the office at Hillsboro High School. The temporary license plates are good on Illinois vehicles from April 3 through June 1, with a culmination celebration this year at the Grace Cup senior soccer game on Saturday, June 8, in Raymond.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXwx-WrQ7i-E9v3tovXfLXWQzZ9wpS2Vxde0rqJB2XAcLVxLJH4L2SINRnlcfZgBVX3t8SMmRsMsBVuZX22xGoZgWd8EWLn6K8Nl5cq7RVh5H9THJtv0dXd08wadceaEYr2VXIXdK7lX-W/s1600/12650940_1730284707201720_240899000928018472_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXwx-WrQ7i-E9v3tovXfLXWQzZ9wpS2Vxde0rqJB2XAcLVxLJH4L2SINRnlcfZgBVX3t8SMmRsMsBVuZX22xGoZgWd8EWLn6K8Nl5cq7RVh5H9THJtv0dXd08wadceaEYr2VXIXdK7lX-W/s320/12650940_1730284707201720_240899000928018472_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Grace shows off one of the sample plates for publicity.</td></tr>
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Right now, we have specialty license plates on our van in honor of our buddy, Camden Burke, who was diagnosed with Cri du Chat, and it’s been fun to see all the orange plates around town in his honor and know there are so many out there supporting him and his family. That’s the coolest part to us. During the Grace plate fundraiser, everywhere we go, every single event that we cover, we see the Grace plates, and it’s just an amazing feeling knowing there are so many people out there who love and support us. It’s fun to try and figure out what each one means or whose vehicle it is. But mostly, it’s just an overwhelming feeling of gratitude for all those who love our Grace.<br />
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<br />So, you still have plenty of time to get signed up, and if you have any questions, you can contact Jo Brummet at Litchfield High School at jbrummet@litchfieldpanthers.org. All proceeds benefit Grace and INAD research. Thanks for all your support and your help to #BeatINAD. Oh, and when your license plates come in, don’t forget to post photos on Facebook so we can see them! <br /><br />mlhagracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-69282061051924364942019-01-20T21:35:00.003-08:002019-01-20T21:35:32.977-08:00A Very Special Birthday Celebration<div class="p1">
We've had the pleasure of meeting some really awesome people on our Grace-Filled Journey, and tonight, we got to celebrate the 60th birthday of one of them.</div>
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I can't say that we met Dave Kane because of Grace's illness. We knew him before we even had Grace, but he has and continues to be one of her biggest supporters.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDvceCIRCMJ_wq7i2jj_Ov1dTlZ_Wq1bt4DVI0ZaCWokciHUHRQHAtigBsqWmeM6XqHtunxx35tCYT3KqfjS_1PbPu3r3DHiPparUD7azwznwAzP2Vo62Zwxjil3Nts5gkYFhJgFbKF0Lm/s1600/50446397_2323355194561332_4023752072741519360_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDvceCIRCMJ_wq7i2jj_Ov1dTlZ_Wq1bt4DVI0ZaCWokciHUHRQHAtigBsqWmeM6XqHtunxx35tCYT3KqfjS_1PbPu3r3DHiPparUD7azwznwAzP2Vo62Zwxjil3Nts5gkYFhJgFbKF0Lm/s320/50446397_2323355194561332_4023752072741519360_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flat Gracie came along for the birthday celebration.</td></tr>
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Dave is a sports writer for the Springfield State Journal-Register, and routinely covers sports teams in Montgomery County. So, Kyle and I have known Dave for a long time. And Kyle would tell you that Dave is one of the biggest influences on his sports writing career. Well, that and the fact that he married the boss's daughter. </div>
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In a lot of ways, Dave and Kyle are two peas in a pod when it comes to covering high school sports. They care about the kids and their teams, and both do such a great job of writing for their newspapers. So, it's only natural that our paths would cross.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3lG055RnWnONkOfkwCr6xcjG-EauTL5D6qxk4sg1CHkU6XO9xdc266CSmqrQ9kx9XK4cARWhoZKt9rMreqLBHhiU77_poi5od5Soix_9xYKtQUSo3mHkt6ZPx2YmFR0Tn6FOnXQfXhzDX/s1600/50294504_10213082032499814_4037518632631140352_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3lG055RnWnONkOfkwCr6xcjG-EauTL5D6qxk4sg1CHkU6XO9xdc266CSmqrQ9kx9XK4cARWhoZKt9rMreqLBHhiU77_poi5od5Soix_9xYKtQUSo3mHkt6ZPx2YmFR0Tn6FOnXQfXhzDX/s320/50294504_10213082032499814_4037518632631140352_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It was a fun night out with our family.</td></tr>
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When Dave found out about Grace's diagnosis, he was one of the first ones to ask us for a purple gracelet to wear. In fact, I think Dave is on about his second or third gracelet, and he's always helping us to raise awareness for INAD. When we were working on publicity for our second Grace Race, we reached out to Dave, and he got us set up with a reporter from Springfield to do a story on Grace and the 5K. That story even inspired a virtual 5K in Springfield, organized by some friends of ours.</div>
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One of the most special moments with Dave was a chance to meet his wife, Abbe, before she passed away. Grace was at her usual physical therapy appointment in Springfield, and Dave and Abbe just happened to be there. They made sure to stop by our room, and we loved meeting her and visiting with her. I'm sure she and I could have shared a lot of stories about being married to sports writers. I even told her about Kyle's favorite road trip game, "Guess the Mascot." She laughed a lot and said Dave never made her play that one. </div>
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Needless to say, we were delighted to receive a card from Dave's children a few weeks ago in the mail inviting us to a surprise birthday party in his honor. Originally, we didn't think we would be able to attend as our newspaper's Christmas party was scheduled for tonight. However, our party got cancelled because of the threat of inclement weather, and when we didn't get much accumulation, we were able to go to Dave's birthday party tonight.</div>
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Although we are almost never on time, we managed to make it to the restaurant before the surprise. We enjoyed meeting Dave's children, and Charlotte was especially delighted to play with his grandson, Liam. The two were practically inseparable all night, and it was so much fun to watch.</div>
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I think the best part of the night was seeing the look of surprise on Dave's face when he arrived at the party, and we were just so honored to be there to help him celebrate. We loved visiting and catching up. He and Kyle talked basketball tournaments, and we enjoyed visiting with some other area newspeople too. </div>
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This Grace-Filled Journey definitely has its share of ups and downs, but the people we have met along the way, and who continue to share in our journey, definitely make the ride worthwhile. Happy 60th birthday, Dave, and many happy returns!</div>
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mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0tag:blogger.com,1999:blog-4155161470432399589.post-77786949868302463402019-01-20T14:14:00.002-08:002019-01-20T14:14:12.137-08:00Fridays Are For Fun!<div class="p1">
For the past five years, Fridays typically mean physical therapy in Springfield for Grace. Before she was diagnosed with INAD, we had heard some really great things about Kids at Koke Mill through Memorial Medical Center, and we thought it might help Grace get walking on her own. Although, we would later learn Grace would never walk on her own, we have kept up the weekly sessions with Amy, as we feel like it's still very helpful to Grace in keeping her skills up as long as we could.</div>
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So, while our Fridays usually include a trip to see Amy, who has totally become like an extended part of our family, every so often, she's gone, and we get a day to play hooky!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig6w9wg928CfiFwG0IkQ2Q1uNkK9l3Bgj0tp-kNP_Rd4jYrisHrwlyc2ZDlEVyIn55DbBt_j2a9gJmfIkfN7gMjUOc2Hbdk9aU1AFLP1wO4_yfaWcpgbxqtNwDERgk_q1blpmXKcao2YD1/s1600/IMG_8779.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEig6w9wg928CfiFwG0IkQ2Q1uNkK9l3Bgj0tp-kNP_Rd4jYrisHrwlyc2ZDlEVyIn55DbBt_j2a9gJmfIkfN7gMjUOc2Hbdk9aU1AFLP1wO4_yfaWcpgbxqtNwDERgk_q1blpmXKcao2YD1/s320/IMG_8779.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting in line at Grace Meat+Three, Charley made a new friend.</td></tr>
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This past Friday was just one of those such days. Kyle had been wanting to go and eat at our favorite, Grace Meat+Three. We hadn't been there since the beginning of Christmas, and we really wanted to go back. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFllJzwsp0FRb6swkiajANmJcuoyXLOQUmECtok12vk4JVF6-_pR86AqDAqCcPQXZXB7GW_McRlTXTudPcSxScsXykW-uGMtm2SqMsicR7sbbhdQOH4J54shXsN56ArMoRNkdLh6k7zarv/s1600/50196336_2015527308516861_3196006910096572416_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFllJzwsp0FRb6swkiajANmJcuoyXLOQUmECtok12vk4JVF6-_pR86AqDAqCcPQXZXB7GW_McRlTXTudPcSxScsXykW-uGMtm2SqMsicR7sbbhdQOH4J54shXsN56ArMoRNkdLh6k7zarv/s320/50196336_2015527308516861_3196006910096572416_n.jpg" width="256" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying our lunch at Grace Meat+Three</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJeUR9eIygX0LojKkH7xD9hpREpa2XH5Rl3NCI4xYV2WboQhz0hyphenhyphenfx5gX89MjbNYST9rqErcTxRNjvQErkYi1mEJ6iO9jzNZhIlzwp5wqqoC9pzSxjjhxeuda-F_HsWhIY8Yz6bDhfcFoS/s1600/50324505_2321785761384942_3022070784832045056_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJeUR9eIygX0LojKkH7xD9hpREpa2XH5Rl3NCI4xYV2WboQhz0hyphenhyphenfx5gX89MjbNYST9rqErcTxRNjvQErkYi1mEJ6iO9jzNZhIlzwp5wqqoC9pzSxjjhxeuda-F_HsWhIY8Yz6bDhfcFoS/s320/50324505_2321785761384942_3022070784832045056_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Flat Gracie enjoyed her time at Grace Meat+Three</td></tr>
</tbody></table>
<div class="p1">
We started making some tentative plans, but after getting several inches of snow the weekend before, we didn't really decide to go until late Thursday evening. But this time, the weather missed us, and we decided it was a great day for an adventure.</div>
<div class="p2">
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<div class="p1">
Our first stop was the illustrious Grace Meat+Three for lunch, which was delicious as always. I love their fried chicken, so that's usually what I get. Kyle is much more adventurous than me, and got a fried bologna sandwich. I think he tries something different every time we come, and he's never disappointed.</div>
<div class="p1">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQzcXGfT8NzACpqadn2R_-iSE5Nji_IonBw5bGoiovAjVI7G3hkLrAuRdfVkZQJjuUednlZ1uVqVzcC_g5MFv7WVNaf2h0IZtaWH3qmwv_dnnfjN__Ruln42Xye5VNjnah1VbTb_pdB3if/s1600/IMG_8785.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQzcXGfT8NzACpqadn2R_-iSE5Nji_IonBw5bGoiovAjVI7G3hkLrAuRdfVkZQJjuUednlZ1uVqVzcC_g5MFv7WVNaf2h0IZtaWH3qmwv_dnnfjN__Ruln42Xye5VNjnah1VbTb_pdB3if/s320/IMG_8785.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun at the Magic House</td></tr>
</tbody></table>
<div class="p1">
We also got to visit a bit with owner and chef Rick Lewis, who is always so kind to us. He took a long time to talk to Grace toward the end of our meal and thank her for coming on her day off. Though she mostly eats Pediasure, she did get to try some of Kyle's leek soup and some of my mashed potatoes and gravy. We also stopped to take her photo with Flat Gracie by her license plate. The last time we did the Grace license plate fundraiser, we got TEAM GRCE for our two vehicles. After it was displayed on our vehicle, we gave it to Rick, where it graciously hangs on the wall in the restaurant next to a tray signed by Andrew Zimmern.</div>
<div class="p1">
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicmN4QWJBbDPKEKIKbPfyorncIkhP8o3bTK7EaO76c-K9TsesVgo15tcw8ATm_ortQeiZmWR_7TdBC8OxaAsyTVoa7AEUAMZgyxL6b-pX6iqdHufqcVMoEprhzeukyRZnmZbUAkOYBDdia/s1600/IMG_8787.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEicmN4QWJBbDPKEKIKbPfyorncIkhP8o3bTK7EaO76c-K9TsesVgo15tcw8ATm_ortQeiZmWR_7TdBC8OxaAsyTVoa7AEUAMZgyxL6b-pX6iqdHufqcVMoEprhzeukyRZnmZbUAkOYBDdia/s320/IMG_8787.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This was one of Charley's favorite stations.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbKEHBZqydkMvZ9tRCn5SZSP1i7Gy6fpnityNyep9GDhFtlSQnhRUZ_H-KE6WS-LZ87OHZdcMK9Tf5BviUGD3HHjtJ3QY4rRl6UvoMQqpaizHGz0caHnyopA96YiGcLxHAasPJUVe5mfAr/s1600/IMG_8788.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbKEHBZqydkMvZ9tRCn5SZSP1i7Gy6fpnityNyep9GDhFtlSQnhRUZ_H-KE6WS-LZ87OHZdcMK9Tf5BviUGD3HHjtJ3QY4rRl6UvoMQqpaizHGz0caHnyopA96YiGcLxHAasPJUVe5mfAr/s320/IMG_8788.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="p1">
After finishing lunch, and talking ourselves out of dessert, we thought it would be fun to take the girls to the Magic House. Grace had been once before when she was not much older than Charley, and it had been a really great time. So, we thought Charley might think the same, and the afternoon definitely did not disappoint.</div>
<div class="p1">
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis53OCU3fGOiG8bKwpkx_wK9dIgitrSIWYO8tUIDhzs939M3dwpCOIsOIKGaMxUfj-a9p1ai6hb3qaEK1TkiSJixy7ZzghlHbZWpVP_VKsdaFtQ76RkxkRTumFlgiQCWY-S-Syw2cRE_-W/s1600/IMG_8789.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEis53OCU3fGOiG8bKwpkx_wK9dIgitrSIWYO8tUIDhzs939M3dwpCOIsOIKGaMxUfj-a9p1ai6hb3qaEK1TkiSJixy7ZzghlHbZWpVP_VKsdaFtQ76RkxkRTumFlgiQCWY-S-Syw2cRE_-W/s320/IMG_8789.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being silly and having fun.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgjq2i4LkBdiXPRjoX3PQvWjtxG6utZ4E72kfkLhTUZP3X12zR4hQDAiF_piRpHxpYi6IZxYFLuXB8wmaCffjrtH6xEMm7TPj0qrPvcX6wyqkOZIRBR0PVcnpvDT7shb-UAO5Q3eqPBRV9/s1600/IMG_8790.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgjq2i4LkBdiXPRjoX3PQvWjtxG6utZ4E72kfkLhTUZP3X12zR4hQDAiF_piRpHxpYi6IZxYFLuXB8wmaCffjrtH6xEMm7TPj0qrPvcX6wyqkOZIRBR0PVcnpvDT7shb-UAO5Q3eqPBRV9/s320/IMG_8790.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="p1">
I can't even tell you what Charley enjoyed the most because she just ran from thing to thing trying absolutely everything you could do there. She seemed to really enjoy anything you could climb on or climb in, and she even tried to climb into the water table. Even with a smock, she was drenched in the few minutes she played in the water table, but she loved every minute.</div>
<div class="p1">
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWBzcqkfr367G-Bmk5PrmusXHDpqNN7SJgCHKCofCz6JfgcDEgsjW-xQ4MWzbgwUpM0GlEGYKjV-hS81pANoPvDURxuNgOt7B-c2b0qkQzw5Y9LBMKbnDUwYpCXF_jX1flFeHi362YZ9Uc/s1600/IMG_8793.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWBzcqkfr367G-Bmk5PrmusXHDpqNN7SJgCHKCofCz6JfgcDEgsjW-xQ4MWzbgwUpM0GlEGYKjV-hS81pANoPvDURxuNgOt7B-c2b0qkQzw5Y9LBMKbnDUwYpCXF_jX1flFeHi362YZ9Uc/s320/IMG_8793.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Climbing fun</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoCDbgV7f13cBJmYKZCbJgPqLdLXCyQelVz861YpxbVZ7wl3cSGqxc13_ZPoaRGrAdoqk1fyPpTu2865D8V1pASn8dC4VKQfAaifsZQmBlL9WXUFYi5wT6bTlh1cA6XcIDXTufdskCMadm/s1600/IMG_8794.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgoCDbgV7f13cBJmYKZCbJgPqLdLXCyQelVz861YpxbVZ7wl3cSGqxc13_ZPoaRGrAdoqk1fyPpTu2865D8V1pASn8dC4VKQfAaifsZQmBlL9WXUFYi5wT6bTlh1cA6XcIDXTufdskCMadm/s320/IMG_8794.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Water fun</td></tr>
</tbody></table>
<div class="p1">
I can remember going to the Magic House as a little girl, when it was actually just a much smaller house. But my favorite part was always the electrostatic generator on the top floor where your hair stood straight up. That was one thing I really wanted to do with the girls, and it was a lot of fun too.</div>
<div class="p1">
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7M-uhPI4FyGNoM1ljf0g3ry4_LpM18Yf4KSV1CIPCJeCCmlwRUfqDjPjeBJkNycRyFbVAFrAsE9-6nhm32JDmb2KPR_oxglsb77ZNRe78hv4QOvAnU_u_kJkZASB-L8l6_MN5YgtJ7Jlh/s1600/IMG_8799.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7M-uhPI4FyGNoM1ljf0g3ry4_LpM18Yf4KSV1CIPCJeCCmlwRUfqDjPjeBJkNycRyFbVAFrAsE9-6nhm32JDmb2KPR_oxglsb77ZNRe78hv4QOvAnU_u_kJkZASB-L8l6_MN5YgtJ7Jlh/s320/IMG_8799.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Training hard with some of our favorites!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6bCOJiMMrZbLv9GnlA9odvBcHyLnNWAdmGHEY1SpZ2dLhFUFr6Ps1YwfwhFjjtfaZ560wT_En0Qn1E2m8VlLueP9HBKTJ14UNNRXYQanac9eZFOf93S6lo7JqONw5sFgQIII5g8M2p9_T/s1600/IMG_8802.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6bCOJiMMrZbLv9GnlA9odvBcHyLnNWAdmGHEY1SpZ2dLhFUFr6Ps1YwfwhFjjtfaZ560wT_En0Qn1E2m8VlLueP9HBKTJ14UNNRXYQanac9eZFOf93S6lo7JqONw5sFgQIII5g8M2p9_T/s320/IMG_8802.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="p1">
Grace liked some of the sensory rooms with different colored lights. One of our favorite things we did that day was an ocean-themed room. Kids had the chance to color an ocean dweller, scan it, and it would appear on the wall. I helped Charley color a jellyfish, and Kyle put Flat Gracie on it when he scanned it, leaving #BeatINAD floating on the wall. It was kind of a neat way to raise more awareness.</div>
<div class="p1">
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi14edPbJwV19jA2qivIiuIoYkwax0HJPk98ytyB0wIyrUY5M1dIhbpW2PH76OnhV6xGSHPuonpNNOEN4Veu2OVZd-TaW7ZxEdYGOBqjb6xVggKl2_9lMV3-eQaIczmlRuGX3-0wK8fJA8e/s1600/50112159_10213069712231815_6575361163696013312_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi14edPbJwV19jA2qivIiuIoYkwax0HJPk98ytyB0wIyrUY5M1dIhbpW2PH76OnhV6xGSHPuonpNNOEN4Veu2OVZd-TaW7ZxEdYGOBqjb6xVggKl2_9lMV3-eQaIczmlRuGX3-0wK8fJA8e/s320/50112159_10213069712231815_6575361163696013312_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Charley is dancing with Grace.</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDmyzhjI8pD78Fq4WbxyI68Pfvm2Cf7wofK5Sm0hKX3PBRpn0H6i8-UoYy7rIJRtUCNjR6vncZY1MfTz08CGAwmjzrTdz_A3_ByL4j1uCgpEI25p93UeHGAIfeZ455-yEWTjqoE5Un5Hra/s1600/50286182_10213069712591824_6676174083471704064_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDmyzhjI8pD78Fq4WbxyI68Pfvm2Cf7wofK5Sm0hKX3PBRpn0H6i8-UoYy7rIJRtUCNjR6vncZY1MfTz08CGAwmjzrTdz_A3_ByL4j1uCgpEI25p93UeHGAIfeZ455-yEWTjqoE5Un5Hra/s320/50286182_10213069712591824_6676174083471704064_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun with sounds</td></tr>
</tbody></table>
<div class="p1">
After a couple of hours, Charley was exhausted, and so was her mommy after chasing her around those two hours, and we decided to head home, grateful that the forecasted weather held off at least for the drive home.</div>
<div class="p1">
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrQNZihv7NlXN_krURXIK3ESxexEymRaiumSwKjk2DXanckHlIUamGv7cN8lhZ7gSdxuveBozIA9v-gZmr33t34UIqFJrL8rQfNBdgsQY6ZOzLLDsl0kouCVGVTiSffI0sbikJ4pKn5U2s/s1600/50140879_2321851834711668_7307265724563587072_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrQNZihv7NlXN_krURXIK3ESxexEymRaiumSwKjk2DXanckHlIUamGv7cN8lhZ7gSdxuveBozIA9v-gZmr33t34UIqFJrL8rQfNBdgsQY6ZOzLLDsl0kouCVGVTiSffI0sbikJ4pKn5U2s/s320/50140879_2321851834711668_7307265724563587072_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Adventures of Flat Gracie</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYiNmEZNJ8uXqlq29bA0erlo71EZm0r7XTx4gHs4KonzhsJxpqWldj8x6uOZGB5jmehD-jRdt3gIwSIacthp__GH_g-R78JXC2MNLyBta4AYdmiPJ_mu5uxNVgINjfDT2jIcXgy9Ns7y2n/s1600/50690280_2321851864711665_3743974961027481600_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYiNmEZNJ8uXqlq29bA0erlo71EZm0r7XTx4gHs4KonzhsJxpqWldj8x6uOZGB5jmehD-jRdt3gIwSIacthp__GH_g-R78JXC2MNLyBta4AYdmiPJ_mu5uxNVgINjfDT2jIcXgy9Ns7y2n/s320/50690280_2321851864711665_3743974961027481600_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="p1">
Most weeks, our schedule is set, full of therapy appointments, school days and work, but every so often, it's nice to play hooky and have a family adventure together. We can't wait for the next one!</div>
<div class="p2">
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<div class="p1">
mlh</div>
agracefilledjourneyhttp://www.blogger.com/profile/16836528726105313589noreply@blogger.com0