Intensity

Next month marks three years since our family's move to Pittsburgh. We knew then and we can see even more clearly now that our return to PA was highly providential for many reasons. The catalyst for this decision was our commitment to help plant The Church at Mon River (we are an official church now, meeting in the Greenfield neighborhood, and we would LOVE for you to visit us on a Sunday morning!). We sensed the Lord leading us to participate in this ministry in the final months of my pregnancy with Ellie. Once we received her diagnosis a few months later, moving closer to family and to a city with a nationally recognized children's hospital and so many other resources was all the more confirming of this decision.

One such resource is The Children's Institute (TCI), located just 12 minutes from our home (actually, 12 minutes if you can cross the Fern Hollow Bridge, but since its collapse it's more like a 20 minute drive). Ellie has been seen at TCI for the past year and a half as a supplement to her in-home physical therapy (PT) services, and it has truly been a great experience.

Why pursue extra PT? As for any of us, extra strengthening exercises are always beneficial to grow stronger and reach gross motor goals. When the pandemic began, in-home therapy services moved online for a very extended period of time. As I've already written, virtual therapy is better than nothing in terms of educating the parent, but very draining and not ideal for a toddler. Slowly outpatient clinics began seeing patients again, so I decided to pursue some outpatient PT to recover the hands-on experience with a therapist. We received services from two sister outpatient clinics prior to TCI, but I was not satisfied with the quality of service, so we finally landed at TCI and found it to be the enriching experience we were hoping to find.

Another major difference between outpatient PT and services in the home is the facilities and equipment that become accessible in a clinic. The possibilities open up significantly at a place like TCI where there are gyms with countless pieces of equipment that can't be replicated at home. Just a sample of these items include a custom treadmill, the Universal Exercise Unit, an adapted bicycle, obstacle course equipment, and so many other items.

Many people know that individuals with developmental delays and disabilities qualify for weekly therapy services. But did you know that individuals can also complete an intensive therapy program that entails 30 hours of therapy over the course of three weeks?! This is what we did in August of 2021.

The Intensity Program at TCI is a unique opportunity to create a "therapy burst" for a child who might need a boost or be close to reaching a critical milestone. TCI is the only organization in the region that offers such a program as this methodology is fairly new to the therapy world. Therapists utilize a universal exercise unit (UEU) and bungees or a pully system to create a weight-training experience for children with low muscle tone. Just two weeks ago I finally received some of the videos from Ellie's program, so if all of that sounds confusing, here's a glimpse of what she was doing during that time!

For three weeks Monday-Friday, the program consists of a half-hour warm-up performed by the parent or guardian followed by one hour of PT and one hour of Occupational Therapy (OT). Baby Christopher was just five weeks old when we began the program, so the therapists excused us from the warm-up portion of the program since I was often nursing at unpredictable times. This made things just a bit more manageable for me.

Like with any therapy program, we set goals that were tailored to Ellie's level of skill and strength, and at the end of the three weeks she was statistically above average in her improvement (adding weight resistance to her exercises, for instance.). Some of her goals included increasing time in independent standing, becoming proficient in use of utensils for feeding, putting coins in a piggy bank independently, etc. None of the goals were met in full (and some didn't show much progress, to be completely transparent), but Ellie did a great job engaging with each activity and overall responded so well to a very intense and exhausting program.

The following videos were actually captured by TCI staff; they asked my permission to film Ellie for a PT conference presentation on the Intensity program because she did so well with the UEU. I was thankful for the videos since I almost never had a free hand to take them - the expectation is that parents are hands-on helping with therapy, or I was nursing the little one.

We worked with many different therapists throughout the three weeks since it happened to be a vacation week for everyone at some point during August, so Ellie was exposed to many different styles for doing the same things. I think this kept things fresh for her and also continued to give me a sense for what kinds of personalities and styles seem to be the most motivating and effective for her.

Having different eyes on Ellie always brings out unique observations. For instance, one of the OTs noticed while working on Ellie's pincer grasp that her index fingers structurally curve toward her middle finger. In fact, so does her second toe. This may make the pincer grasp even more difficult for her and could contribute to her preference for a lateral grasp. Several OTs have gone before her but didn't particularly notice this anomaly, so it's helpful to periodically gain different perspectives.

Paying out of pocket for this program would not be an option for most families, including us, so I continue to be so grateful that we live in a time and place where our private insurance will cover part of the expense and Medical Assistance will pay for the rest. I know people have mixed feelings about public insurance, but it is what makes helping Ellie achieve her potential possible for us. I thank the Lord for this blessing often.

It is very likely that we will pursue the intensity program again since Ellie responded well to it and would be eligible again in the future. While it was a major commitment for three weeks of our summer, we did feel that she got stronger and more confident through much repetition and concentrated effort. There weren't any major milestones achieved, to be fully honest, but that doesn't mean it wasn't meaningful work for the whole team behind her.

It would be tempting to force a concrete victory into this account, but that wouldn't be completely honest. In fact, we are still working on many of the same goals many months later. I'm reminded of the process of sanctification as a Christian when I think about the therapy journey. Both involve hard, slow work that doesn't always yield flashy fruit very quickly. But God is sovereign over the process in therapy and as we grow in holiness day by day, and He is strengthening us as we submit to His plan.

There were a couple of days during Intensity that Ellie was pretty resistant to the therapists, and it did feel like a wash and a waste of time. We continued to show up even when none of us were really feeling it, and I don't regret that at all. For myself, it's not always easy to obey when sanctification is painful, like a tough exercise in the UEU, but submitting is always worthwhile because it will yield a harvest of righteousness in the Lord's perfect timing. And someday, if/when Ellie walks, I will look back on hundreds and hundreds of hours of therapy and practice and remember that God used all of it to strengthen her for that miracle.

I don't say this enough, but I am so proud of Ellie. Her ability to achieve therapy goals has no bearing on how much I love her or how I view her as an incredible little girl. I'm so grateful to be on this journey with her, and she teaches me so much as we work together day by day. The Lord has richly blessed us with this beautiful daughter!