A Little Stroll

When we got home from NAPA Center three weeks ago, I tried to make more of an effort to have Sol spend some time in his gait trainer each day.

When I say “make more of an effort”, that generally means that I’m successful maybe every few days because, let’s face it, if I were to do every activity that every single one of Solly’s therapists want me to do at home with him, we’d have enough activities to fill up 54 hours in one day. But, we’ll save the topic of “Mom is medical coordinator, researcher, therapist, advocate, all-while-trying-to-be-Mom” for another post.

While chatting with Jennifer, Solly’s PT at Full Circle Therapy, during last week’s hippotherapy appointment, I told her that we were struggling to find something at home to motivate him to take steps in his gait trainer. She suggested that we allow Solly to have alone time while in his gait trainer so he can work on figuring it out on his own. So, we took her advice and starting last week, for about 30 minutes before dinner, Solly would spend some time simply hanging out in one of his gait trainers. For a couple of nights, he’d shuffle forward a little bit and get stuck, so I’d adjust him and let him hang out so more.

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One Giant Leap for Sol-kind

This morning, we packed up a small 3 bedroom condo in beautiful Belleair Beach, Florida, buckled the kids into the car, and headed into our final day of Therasuit Intensive Therapy at Lamperts Therapy Group. For the past three weeks, Solly has been working his tail off three hours a day, five days a week. Therasuit is very similar to the intensive therapy we did back in July, except this round was much longer, much more intense, and very regimented.

​Every day, therapy began at exactly 9am. For the first hour, Solly started out laying on a table, where Gina, his physical therapist, would apply heating pads to his legs and hips. She’d stretch out each limb, paying super close attention to his legs, hips, and right arm since that’s where he tends to get the tightest. She would then move Solly through a series of table exercises where she’d attach a small weight via a pulley system to his leg or arm and, by lightly tapping him, encourage him to move his limb in a certain way. 

Workin’ those glutes!


After his stretching and lifting exercises, Solly would either work on walking or on core and arm strength for the remaining two hours. Both of these activities were done with Sol wearing a therasuit, which is a compression garment and a series of rubber strips placed to bring awareness to specific areas of the body. For core and arm strength, she’d move him to the floor to work through sitting, side sitting, tall kneeling, quad position, or sit-to-stands. Walking was done either in a gait trainer or on the treadmill.

Hands and knees – not our favorite


The entire three hour session was tiring for Sol. We made sure to take several breaks for hugs and snacks, but, in true Solly fashion, much of the session was completed with a smile on his face. 

Jumping!


Results from this intensive therapy can continue to be seen for weeks after completion, but here’s what we noticed so far:

  • Perhaps most excitingly, Solly took his first-ever unassisted steps in a gait trainer!
  • When Sol walks, his legs tend to scissor due to high tone. Part of teaching him how to walk includes proper foot placement to avoid scissoring. Over the final days of the therapy, it seemed that he became much more aware of where his body is in space. We noticed that his foot placement improved drastically, so much so that he could keep his legs from scissoring while walking in the gait trainer.
  • Improved core strength altogether, including arms!

First unassisted steps in a gait trainer


While these gains may seem like itsy bitsy baby steps, being able to walk in a gait trainer on his own is a HUGE gain towards independence. We’re excited to head home, continue the home program that Gina prepared for us, and allow Solly to spend more time in the gait trainer. We hope this will be the first step to him really taking off with walking!

An Intense Intensive

This week, Solly had his first ever PT intensive at Full Circle Therapy, the center where he does hippotherapy.

It was intense! (Seriously. Solly took a 4 hour nap yesterday!)

Each day started bright and early at 8am, which meant an even earlier wake up call than usual for Sol. Our goal for the week was to increase his mobility, so Jennifer, his PT, focused each day on activities to strengthen his hamstrings, hip flexors, glutes, and all walking muscles, as well as other activities to bring awareness to these parts of his body. She used a combination of weight-lifting via pulleys, a Spider Cage, mechanical horse, treadmill, swing, and therasuit to target his walking muscles and core, quickly moving to a new activity when Solly started to appear “over it” to keep him interested and engaged. She also tried having him walk in his various braces with his KidWalk, a gait trainer, crutches, and with hands under his arms for support, all trying to trigger and activate different muscles and so he wouldn’t get stuck in one pattern.

It was fascinating, exhausting, and, in the end, SUPER productive. We went from Sol really struggling on Monday to engage his flexors to walk forward on the treadmill to him walking on his knees and feet with assistance under his arms on Friday. We have a long way to go, but now we understand that Solly’s issues with walking stem from a motor planning issue – his legs get stuck in extension and his brain has trouble telling them to break up any high tone to bend the knee. Jennifer sent us home with three simple PT activities to focus on over the next few months and, because we see her every week for hippotherapy, she can check in on his progress and help us makes tweaks. We’ll focus on those activities for walking until the end of October, when we travel to Tampa for a 3 week Therasuit intensive.

We are so thankful to have found Jennifer. She is very in tune with Solly’s needs and thinks the sky is the limit for him. We couldn’t agree more.

Here are some photos taken throughout the week:

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And my favorite video of reciprocal knee walking (!!!):

Inching Along

Dad_and_Sol

First winter in Nashville

Today marks the beginning of our fifth month in Nashville. Four months down and we are finally getting into the swing of things with our therapy schedule. We have 6 weekly therapy appointments: 3 physical therapy (with two different therapists), 1 occupational therapy, 1 feeding therapy, and 1 developmental therapy. We are also being followed by a vision therapist and developmental optometrist every 3 months. Needless to say, combining therapy with our regular doctor and specialist appointments, we are on a strict schedule and are very tired at night!

That being said, every second we spend with therapists, doctors, and on the road to appointments is worth it. We’ve seen lots of tiny developments in all areas that are beginning to add up into bigger gains.

Pudding

Pudding is so yummy!

Quite literally, Solly is gaining weight! I wrote quite a bit last year about his stressful weight plateau and how we weren’t given any answers or solutions. Apparently, a weekly session with a feeding therapist is all we needed. Now, feeding is no piece of cake – I suspect Sol has some sensory issues that are contributing to this – however, he is consistently eating three small meals a day and drinking three bottles. He’s even trying a bit of table food, with french fries, chocolate pudding, and pancakes now his favorite foods. It might not sound like much, but this is a huge victory for us. More importantly, Sol has put on at least 4 pounds since we’ve lived down South, moving up in size from 9 month clothing to 18 month.

Another major gain has been learning to use his right arm. Many of our goals in OT include a stronger and engaged right side, so this has been much of our focus in our weekly sessions. When we moved to Nashville, Sol wasn’t sure how to engage his right arm or hand at all, so it typically hung at his side at all times. Now, he’s not only raising his right arm to give a fisted high five, but he’s also raising it to bat at toys. Take a look:

We hope to start some version of CIMT (Constraint-Induced Movement Therapy) this year to continue to increase the use of his right arm and hand.

When it comes to gross motor skills, Sol has made the most gains. Our therapists have added some new tools to our toolbox, which have made quite the different in his tone, strength, and skills.

Grocery_cart

Sitting up tall

For sitting, we purchased a GoTo Seat, which supports Sol enough to sit independently. While it does not make his trunk stronger (which is what we really need!), it gives him a feeling of confidence and independence to sit and play with toys alone. This paired with trunk strengthening activities in PT have made him much stronger. He’s now sitting independently using an arm to prop himself up and can now sit in a grocery cart all by himself, which he loves!

Stander

Stander time

We’re also starting to use a stander. A stander is exactly what it sounds like: it helps kiddos stand. Independent standing helps with developing hip joints, bone density and leg strength, but for kids with CP who are delayed in this milestone, like Solly, there is a risk of hip dysplasia and other impairments. Luckily, a stander will help Sol develop strength, density, and proper alignment, and it will also help decrease muscle tone. While we’ve ordered our own, we are still waiting for insurance to approve its necessity. Fortunately, United Cerebral Palsy of Middle Tennessee has a neat program called the Equipment Exchange that loans out used equipment, and we were able to borrow a stander from them. Sol now spends about 40 minutes a day playing in it.

Gait_trainer

Moving right along

Most 15 month old children are up and walking on their own. While we are working on each milestone in chronological order, we also try and expose Sol to things typical 15 month olds are doing. Since he isn’t strong enough to walk on his own yet, we’ve begun teaching him how to walk using a gait trainer. It is similar to a walker, but it also includes lots of ways to support his weak trunk. At least once a week, we get Sol into a gait trainer and go through the motions of getting his legs through a reciprocal movement. He doesn’t quite have the hang of it yet, but he will try to move one leg forward a couple of times each session.

Finally, and most exciting, is seeing all of Sol’s hard work come to fruition. Last weekend, we watched as he figured out how to put one arm in front of the other and pull his body forward completely independently. There is no better feeling than watching him learn a new skill and then run with it! Here is Solly’s version of an army crawl: