Category: Sol’s Progress

So long, 2017!

Leave a comment

Every once in a while, this roller coaster that we call life heads downwards. Nothing is wrong. It’s just that Solly, Bea and I have been sick with the ick for the better part of a month, which means I have less time to work on Solly’s stretches and exercises, and more time to focus on everything that we aren’t accomplishing.

When life gets like this, I feel a little down for a day or two, and then something as silly as a Facebook memory post knocks me out of my funk. Seeing a post from a year ago reminds me just how much he has grown up and come so far in such a short time. What a year 2017 has been!

We started out 2017 with the mindset that it was the year of change, a year to focus on alternative therapies and procedures as a means to propel Solomon’s progress.

Here’s what we did:

  • First, we added a little sister to the mix. Nope, that wasn’t solely for Solly’s benefit, but let me tell you, having a little sister around has been so good for Solomon. For the first several months of her life, Solly was just so curious about her. He learned how to be gentle around her and to simply observe. Now that she’s a very busy 11-month-old, we’re starting to see the beginnings of a very special sibling bond. Sure, they’re already bickering and picking on one another like siblings typically do, but we’ve also caught them in the act of loving on one another – hugging it out and giggling with each other – and it’s moments like this that make my heart soar. I can’t wait to watch them grow up together!
  • Shortly after Bea’s birth, we moved the family to Hilton Head Island for 2 months so we could start Hyperbaric Oxygen Therapy.
  • In early June, Solly had a procedure called Selective Percutaneous Myofascial Lenthening (SPML). In short, this helped loosen up his legs and give them more range of motion.
  • We followed up SPML by adding hippotherapy to our weekly therapy regimen and we also did two rounds of intensive therapy – one in Nashville and the other in Tampa.
  • And even though we had quite the crazy schedule in 2017, we even found time to cancel all appointments for 10 days and take a vacation.

The end result from our year of change? Progress. Lots and lots of progress. Solly went from having no words to making LOTS of noise (he has about 20 words right now) and from not being able to take any steps AT ALL to taking several assisted steps.

He’s sitting up straighter and by himself for longer periods of time, he’s eating so much better and he’s now insisting on holding his bottle and using his own spoon with assistance. He’s made gains in so many areas!

I’d love to say that 2018 will be a low key year compared to 2017, but that simply won’t be the case. Our year of change showed us many things, but most importantly, it showed us the value in alternative and intensive therapies and the fact that we shouldn’t settle when doctors don’t believe in Solly’s capabilities. This means that in 2018, we’ll be traveling for more intensive therapies and to consult with different doctors and specialists. We’ll also be doing another round of HBOT (in Nashville this time, starting next week!), trying stem cell therapy, and adding an additional weekly hippotherapy session.

I think it’ll be a busy/fun/productive/unexpected year and we’re up for whatever the year throws our way. Stay tuned for updates!

One Giant Leap for Sol-kind

1 Comment

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!

Two Months Post-SPML

2 Comments

This Sunday will mark two months since we made the difficult decision to have Selective Percutaneous Myofascial Lengthening (SPML) surgery. We’ve been hard at work over the past two months, doing some intensive therapy as well as weekly hippotherapy, and, boy, are we seeing some great gains.

For those of you who know Solly personally, you might remember the “old” Solly as a little boy who could not stand or move his legs reciprocally.

This was Solly in April:

Last night, Mike “walked” Solly around the kitchen for a good 20 minutes so Solly could explore, open drawers and cabinets, and see the world from a new height. It was pretty amazing. I was on cloud nine watching Solly move around in ways I never thought would be possible given the level of tightness he had earlier this year.

This is something that we practice every day. We used to try to get Solly in his KidWalk daily before the surgery, but he grew increasingly frustrated in it because he couldn’t move the way he wanted to. Now, he can not only move in it but he enjoys the time he spends walking around in it.

Pretty cool, right?

An Intense Intensive

Leave a comment

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:

This slideshow requires JavaScript.

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

​

On Vision and HBOT

Leave a comment

For those of you who have been following our blog since the beginning, you might remember my constant worry over Solly’s vision. Sol was born with his eyes somewhat stuck looking towards the left. A part of the initial prognosis given was that he could be blind. (Note to Mom’s new to a pediatric stroke diagnosis: take the first prognosis, however grim it may be, and consider it only a possible outcome. Your child CAN and most likely WILL do much more than doctors believe he or she will after a stroke.) Even after rigorous vision therapy, we still got diagnoses – from several different doctors, many giving conflicting thoughts – of delayed visual maturation, CVI (cortical vision impairment), strabismus, nystagmus, possible visual field cut, possible double vision, and so on. With all these possible diagnoses swirling around us, even though it seemed that Solly was compensating well for whatever vision issues he had, we couldn’t be sure how well he was seeing. It was always a point of major frustration.

With hyperbaric oxygen therapy (HBOT), we had read of many children having improved vision after a full course of treatment. In our own experience, we saw many instances where Solly was interacting with his surrounding environment in ways we’ve never seen before, thinking that maybe it helped his vision and helped his brain make new connections as a result. But whenever we think Solly is interacting in new ways, we question IF he is and WHAT, if anything, helped his brain make those connections. We try so many things that we can’t always be sure what move was the right one.

However, after an appointment with Sol’s developmental optometrist earlier this week, we are no longer questioning these new connections: HBOT did, in fact, help Solly’s vision.

Amusing ourselves at an early morning optometry appointment


This past October, at our last appointment with our optometrist, he ran a test on Sol where he set up sensors on his head and had Solly watch a series of images flash on a screen. The sensors provided data into what Solly was seeing and how well his brain was processing the images. We were delighted when the results came back as “within normal limits.”

This week, we saw the same doctor for the first time since October and he ran the same test. After he examined Solly’s eyes, he told me that his vision had improved even more in the past 8 months. He asked if we’d been working hard on our home vision therapy exercises. I said, no, we simply just try to expose Solly to as many new environments as we can, but that we’d also done a full treatment of HBOT and thought that had a great impact on his vision. His optometrist not only agreed that HBOT had helped but he also encouraged us to do another round of treatment as our schedules allowed. We will continue to be followed by Solly’s optometrist every 6 months, but right now, no need to worry about glasses, patching, or surgery at this point. 

We’ll count this news as one big win for HBOT!