Sunday, January 15, 2017

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.


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