A Year Of 'Firsts' On This Grace-Filled Journey

Within the next month, it's going to be very busy in our house with the addition of another daughter at the beginning of March.  And since it's going to be a year of new and exciting things, I've decided to write my monthly column on "firsts" throughout the year.

Since January brings all things new, I thought I would write about surviving our very first home renovation project. And though we aren't completely done, it's definitely been a journey worth doing.
Our home features a finished basement, that we actually use for our living room most of the time.  It's got a large, open room, as well as a small side room and a bathroom.  The bathroom had been done not that long before we bought the house, so it was in good shape.  However, the basement was in desperate need of some new carpet and trim.  Since that type of project would require moving things out anyway, we opted just to have the basement remodeled all together.

Family movie time in the new basement!

Initially, Kyle and I talked about doing some of the work ourselves, or recruiting some family members to help us out along the way. We decided that it might be worth our time to look into having someone do the work for us. Although it might have saved us some money to do some of the things, like painting, on our own, we also thought about the other things we could do with that time, and it seemed like a better idea to hire the work done.  And it was worth every single cent we spent.

We used the larger room to watch TV and play with Grace, and we considered the smaller room an office, mainly because it included a desk, piled high with junk that needed to be thrown out.  Instead of fixing it up as an office, we decided it might be more fun to turn it into a toy room, and picked out a light purple color for the walls. Built in the 1960s, the room still has the original wood paneling. Instead of covering it up, we opted to paint over it, and were very pleased with the results. 

Grace's new playroom.

For Christmas, we got Grace a Disney princess wall hanging for the walls in the playroom, and it's been fun to set up many of her toys and books in that room.  I hope that she and her little sister will enjoy countless hours of fun as they grow up.

When it came to the main room, we picked a sage green type color for the walls, mainly because I'm a huge fan of green.  The walls have always been white, so it's been fun to see it spruced up with some color.  We have also enjoyed hanging things back on the walls and bringing new things down. 
As with all home improvement projects, we hit a few bumps along the way, but didn't give it much worry. We knew things would all get done, and it didn't do much good to worry if it got off schedule.  And eventually, all the work was done.  We have absolutely loved the fluffy new carpet, and it's like a whole new living space since we rearranged the furniture.

Some of the new wall decor in the basement.

I wouldn't say the project is complete, as we still can't get the van in the garage for the stuff stored out there.  I've been working hard to sort through things and get rid of a lot of stuff. Like most people, we just have way too much stuff, and I refuse to bring things back downstairs until they've been gone through.  I must admit that part is taking longer than I had hoped, but it's been worth it too.  We have lots of boxes ready to donate to the Salvation Army, and I know we will eventually get things sorted out.

Thanks to the help of some awesome local businesses, our family not only survived, but thrived through our first home improvement project.  And I'm pretty sure that not having to paint together means that our marriage will last a little longer too. 

Though we may not get all our home projects finished up before the baby comes, we know it will eventually get there.  It's going to be a great year of "firsts" for our family, and I hope you enjoy reading more about our Grace-filled journey.




MLH

It's Miller Time!

We don't get very many chances to see our favorite NCAA Division I basketball team play in person. Most of the time, it's hard to even catch them on television, as the mid-major team is based in Fargo, ND.

Although, Kyle still roots for Illinois and I'm still a Missouri Tiger at heart, we've adopted a new team over the past two seasons, the North Dakota State University Bison. And let's face it, they're much more fun to watch than the Illini or the Tigers the past few years.

Princess Grace in the lobby of our hotel room. It was just too cute not to share!

Our journey to the green and gold team started when Hillsboro High School senior Dylan Miller helped Grace "dunk" the basketball at a game Kyle was covering. The 6'7" Miller would go on to join the Bison, and we have been fans ever since.  Last year, we had the chance to see them play twice in person, once when they played the Illini in Springfield and another time for a conference game at Western Illinois University in Macomb.

Hotel snuggles with daddy!

When the schedule was released for this season, Kyle immediately put their game at Western on our calendar, and we started making plans for a return trip to Macomb. The three-hour drive definitely requires an overnight stay on our part, and it's still much closer than going all the way to Fargo.

We had pizza delivered for dinner - and it was great!

We decided this year that we would go up on Friday night before the Saturday game. Grace had physical therapy in Springfield, so we were already a good portion of the way there, and it gave us a chance to relax on Friday evening. Originally, we had planned to take Grace swimming at the hotel, since that's one of her favorite activities. However, the pool at the hotel was closed for repairs, so we opted for a movie instead. 

Grace loved listening to the music during the movie "Sing."

Kyle and I had been wanting to take Grace to see the animated movie Sing, and it was  perfect opportunity. We made sure to sit pretty close, and although I'm not sure how much of it Grace could see, she definitely enjoyed all the music, and we enjoyed the chance to be together.

Watching our Spurs play at Buffalo Wild Wings.

We enjoyed a pretty lazy Saturday morning in the hotel room, before stopping for lunch at Buffalo Wild Wings to watch Kyle and Grace's Tottenham Hotspur play in the English Premier League game.  The food was great, and it was fun to watch the game together too.  

Hanging out with my favorite Bison cheerleader!

After having lunch, we headed back to the campus at Western Illinois University to get ready for the game.  We picked seats right behind the North Dakota State team bench, and waved at Dylan as he and his team got ready for the game.  Grace looked awfully cute in her Bison cheerleading uniform and seemed to enjoy the people that came over to talk to her.

Someone fell asleep on daddy's lap during the game.

Kyle had a chance to visit with our friend, Wes, who is an assistant athletic director for the team, and has followed our story since the very first game we saw. We brought a couple of Grace scarves for Wes and his wife, as a thank you for all they have done for us.

Daddy and his tired little Bison fan.

Once the game got started, Dylan took the tip off for the Bison. Grace and I cheered from our seats and Kyle took a spot on the sideline to take some photos for the paper.  It ended up being one of the best games Dylan had this season, and Kyle got some awesome photos of him dunking the ball in the first half.  Kyle joined us in our seats for the second half, and Grace promptly fell asleep in his lap for a good portion of the game.

Dylan was so gracious to come over and talk to Grace after the game.

We have really enjoyed the chance to see the Bison play in person and meeting some members of the team.  After the game, Coach Richman stopped by to thank us for coming, and Dylan made a point to come over to thank us too.  He talked basketball with Kyle for a little bit, but specifically stopped to talk to Grace and ask her if she enjoyed the game.  Even though she couldn't respond with words, she had a huge smile for Dylan, and I know she was glad he came to talk to her.

Kyle got this awesome shot of Dylan during one of his dunks.

Even before we learned that Grace had INAD, we tried hard to share as many experiences with her as possible. And we've had some really great chances. Although we've adopted the Bison as one of our favorite teams, we feel like they've adopted us too.  Since Fargo is a 12-hour drive, we may not have very many more chances to see them to play in person, but we know we'll be on the sidelines next January when they head back to Macomb. We wouldn't miss it for the world.

mlh

A Beneficial Therapy

As we turn the calendar over to another year, we can't help but be grateful for all the therapists who help keep Grace at her best each and every single day.  Although Grace's disease is regressive and keeps her from making much long-term progress in therapy, the weekly sessions help to keep as many of her skills as possible and also keeps her in good health.

Our journey into the world of therapy started about four years ago when Grace was just 18 months old. She could take a few steps independently, but never really started walking on her own. So, we began to inquire about the Early Intervention birth to three program, and the possibility of helping Grace catch up on meeting some of her milestones. At the time, we thought Grace would only qualify for physical therapy, but a developmental screening was required as well, and we discovered Grace wasn't meeting all her milestones for fine motor skills either.

You can see the mutual admiration for each other as Amy works with Grace on standing last year. 

For the next year and a half, Grace had therapy three times a week, including physical therapy, occupational therapy and eventually speech therapy at our home.   It's funny how quickly these therapists become part of your extended family, as they celebrate successes with you and try to come up with the best ideas to help your child succeed. 

In the beginning, we had no idea that Grace would be diagnosed with INAD, and we worked hard with her every day trying to help her catch up on her milestones. And she made progress in building trunk and core strength for several months.  As she continued not to be able to walk on her own, we sought additional physical therapy, and got some good recommendations for a pediatric therapy place through Memorial Medical Center in Springfield. 

We've been seeing Amy nearly every Friday for the past three years. Again, we started going once a week about a year before we learned Grace had INAD.  When we first started, there was this blue barrel that Grace just loved to walk around, over and over again. Amy worked hard with Grace (even when Grace protested) to help her move toward the goal of independent walking.  She was always trying new things and sharing her experiences with us.

Grace just giggled when Lauren helped her knock the tower over in speech therapy.

About six months after we started physical therapy in Springfield, we began to inquire about additional physical therapy to help Grace out.  The only problem with that, is that Springfield is about an hour from our home, and we just couldn't get there more than once a week.  So, we looked into other options closer to home, and started Grace seeing Dr. John Mekala at RehabEdge in Hillsboro.  We heard he had quite a bit of success with young patients, and he was more than happy to start seeing Grace.

When we first started, Grace would hold onto his fingers and walk from one end of his office to the other.  She protested when he made her do things she didn't like, but he always believed she could do it.  And I think he still does.  Dr. John also works hard to keep her spine in alignment, as scoliosis can become a major problem for INAD kids.

As Grace turned three, she aged out of the Early Intervention program, and we looked into the school district's pre-Kindergarten program.  As we were very happy with the physical therapy Grace got twice a week, we were mostly interested in getting her some additional speech therapy.  All our therapists told us that for most kids, the gross motor skills (like walking independently) come first, following by more fine motor skills and then speech. They felt like if Grace could get walking on her own, her speech skills would follow.

Dr. John Mekala is one of Grace's very favorite people (and ours too!)

We ended up deciding to send Grace to a preschool program three days a week at our church, instead of the school district program, but that left us without any speech therapy.  It just so happened that the friend who introduced us to Kids at Koke Mill in Springfield was also a speech therapist for TeamWork Rehab at Hillsboro Area Hospital.  And we made an appointment for a screening with Grace.  I can remember the very first thing she worked on with Grace was trying to get her to say "I Love You."  

It wasn't long after we started that speech therapy, that we learned Grace had INAD, and would probably never gain any of the skills we had spent the last 18 months working so hard on.  The thing about therapists is that when you see them each and every week, they truly do become part of your family.  They help you celebrate all the little successes and milestone along the way, but they also share in your heartbreak.  We just so happened to have therapy with Amy the day we found out she had INAD, and I think it broke her heart as much as it broke ours.  

Initially, Kyle and I talked about backing off some of the therapy we did every week. At the time, she had speech therapy twice a week at the hospital, and also saw John and Amy once every week.  We talked about maybe letting go of our weekly Springfield visit because it's such a big commitment to take her so far every single week.  We talked about going down to just one time a week for speech therapy, just to make it one less place we had to go.

Grace loves when Amy helps her stretch out on the ball.

But the more we prayed for a miracle for Grace, the more we realized that we would still have to do our part too.  We couldn't pray for her to get better, and then not utilize the tools at our disposal.  For the last couple of years, Grace has qualified for an All Kids insurance card, which covers all the therapy she needs, and we are so grateful for that, because it means we don't have to worry about getting her covered.

And while Grace's therapists were just as devastated as we were to learn she would probably never walk on her own or talk, they never stop trying to find new things that will help her.  Amy went all the way to Arkansas for a special training on a BalanceWear vest, that helped Grace improve her head and neck control for awhile.  In speech therapy, Lauren just started doing some additional oral stimulation to keep her skills for eating strong.  Grace isn't a huge fan of it, but we feel like it's still important.

It would be easy to throw in the towel and give up taking Grace to therapy every week. After all, as the disease progresses, it keeps her from reaching any longterm goals.  When we started physical therapy, our goal was for Grace to walk on her own.  She could take a few independent steps and was a champ at walking with her posterior walker or with a little help from mom or dad.  Now, three years later, Grace isn't even able to sit up on her own, or hold her head up without help.

Yes, it would definitely make my life a lot less complicated not to find time to work in three therapy sessions every week, as well as three mornings of preschool.  But we know that's not what's best for Grace.  She may not make any long-term progress, but she does still meet little goals, and her therapists continue to celebrate those small successes with us each and every time. They never stop trying just because Grace won't be able to walk or talk.  They continue to push Grace to her potential, never giving up on her, in spite of her limitations. 

There's definitely no quitting on this Grace-filled journey, and we are so grateful to those who help us keep Grace happy and healthy along the way.

mlh