Category: Alternative Therapies

The Right Kind of Support

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Before I had Solly in my life, social media was a place to simply share photos, articles, humblebrag, and occasionally whine. Back then, even though I was working in digital marketing, I felt myself growing increasingly annoyed with all the oversharing on all platforms and was particularly ready to pull the plug on Facebook (hello, addiction!).

Then, I had a special needs child. Because of HIPPA, our doctors and therapists couldn’t connect me with other parents going through a similar journey. I connected with a few parents while in waiting rooms, but their child’s diagnosis wasn’t always the same, so I still had questions and craved advice from parents who had been there, done that. So, I started googling and realized how many special needs parents were making those kinds of connections on social media – mostly, Facebook, but also Instagram and Twitter. Over the past three years, I’ve started one support group and have followed and participated in several others. These groups not only help me discover new therapies, new medical treatments, and doctors that can help Solly, but they also give me a place to vent and share wins with people who go through similar ups and downs every day. Plus, I’ve even gotten to meet several local parents who I’ve since met up with in person! (These meet ups are refreshing – it’s always like reconnecting with a long-lost friend.)

A daily walk in the shoes of a special needs parent is certainly not an easy one. But I’ve found that with the right support group, life has gotten a little less scary and, in most cases, I’ve even felt empowered when making decisions for Solly.

If you’re new to a cerebral palsy or stroke diagnosis, or you’re simply looking for help with some of the alternative therapies, here’s a list of my go-to support groups on Facebook:

General

KISS Pediatric Stroke Support (I started this support group with two other stroke Mamas so we could not only connect parents with one another and share experiences, but so we could also follow what non-profits were doing to advance pediatric stroke awareness. We’ve grown to over 1,000 members and have parents from all over the world.)
Mom’s of Pediatric Stroke Survivors (If you’re local to the middle Tennessee area, be sure to join this one. It’s based in Nashville and gives lots of good resources on local therapies and doctors, plus the Mama who started it puts together a meet up every few months.)
CP Warriors, Mommies, Daddies, Grandparents, and Caregivers
2014 Cerebral Palsy Babies Support

Medical & Alternative Procedures

SPML – Selective Percutaneous Myofascial Lengthening
HBOT for Pediatric Neurological Conditions
Parents for HBOT
Stem Cell Therapy for Cerebral Palsy and Brain Injury (Parents Information)
Pediatric Cannabis for CP & Other NeuroMuscular Disorders
Pediatric Cannabis Therapy
Anat Baniel Method Parents/Caregivers

Know of any others I should add to the list? Feel free to send them my way!

As I mentioned above, I’ve also met some parents and gotten great info on other social media platforms. I’ll do my best to put together a post with my favorites, so if Facebook isn’t your thing, stay tuned!

Solly and Bea

Another type of support often seen in our house: sister helping brother!

One Giant Leap for Sol-kind

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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!


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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!

On Vision and HBOT

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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!

Hippotherapy

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Three weeks ago, Solly had his first hippotherapy session. Ever since Solly turned two, the age when children are generally allowed to start horse therapy, I have been anxious to get him on a horse.

In December, he had an evaluation at Saddle Up!, a therapeutic riding center in nearby Franklin. In the short 20 minute evaluation, I got a clear picture of how beneficial hippotherapy could be for him: he smiled and giggled while on horseback as the horse moved at a walk, halted, and circled. Though it may not seem like those simple actions are doing much, they are, in fact, building much-needed core strength, balance, and movement patterns in Solly’s body and brain. Unfortunately, at the time of our evaluation, Saddle Up! was undergoing some therapy staff changes and as much as the physical therapist who completed Solly’s evaluation wanted to begin treating him, there simply wasn’t a spot for him and he was placed on the waiting list. Surprisingly, there are only two therapeutic riding centers in Nashville: Saddle Up! in Franklin is a quick 20 minute drive and Full Circle Therapy in Smyrna is a much father trek. I preferred to not spend too much time driving to and from therapy appointments so I considered Saddle Up! our only option.

Solly’s evaluation at Saddle Up!

Fast forward six months, in the recovery room for Solly’s SPML surgery, his orthopedic surgeon told us the best way for his hips to rebound and strengthen after surgery is to think of putting him on a horse. I’m sure he meant this figuratively – creating a horse shape between his legs, especially any time he is out of his brace. For those of you who know me personally know that I’ve always been a horse-crazy nut, so a light went off in my head as the doctor said this and I took him quite literally – it was time to get Solly on a horse! I decided extra time in the car was worth the benefits of this type of therapy, so I got in touch with Full Circle Therapy. Days later, we completed Solly’s evaluation and were able to find a spot on his new therapist Jennifer’s hippotherapy calendar. We started immediately.

We are now three therapy treatments in and we’ve have already seen some benefits. I cannot wait to see how Solly continues to thrive with his weekly riding therapy and hear both his and Bea’s giggles when they both get to see Solly’s therapy pony each week.

Solly’s all smiles on Cheyenne, his therapy pony

A Coffee Date

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Two little rascals

You know what happens when you have two babies under the age of 3? You drink all the coffee and don’t sleep a whole heck of a lot, let alone write blog posts.

I have had so much to say – so much has happened over the past couple of months – but at the end of the day once both babies are in bed, I struggle to get the words out of my head. Instead I usually let my brain ooze while I watch the Bachelorette and drink a glass of wine, promising myself that I will write that blog post tomorrow.

So, friends, grab your coffee (I’m already on my second cup while en route to a therapy appointment), and let’s have a coffee date – I’ll catch you up!

  • On May 24th, Solly and I completed our first round of hyperbaric oxygen therapy with our final, 40th dive. I found our entire experience of HBOT to be so positive and, most importantly, Solly had so many gains. You can read about experience with HBOT here and here.
  • The next day, we packed up our lives in South Carolina and – with the help of Nana and Papa – Solly, Bea, and I flew back to Nashville while Mike drove home with Solly’s equipment and our pups. Given all of Solly’s gains with speech during HBOT, our two short flights were wild with Solly laughs and squeals. You know when you fly, there is always that one child who is screaming during the entire flight? Yep. That was Solly! And, boy, are we sure happy that he’s that kid now!

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    Nana and a wild Solly on the airplane

  • Just one short week later, Mike and I packed up the babies once again and flew to Summit, New Jersey, where Solly had a consultation and surgery with Dr. Nuzzo. This one is hard to summarize, so I’m putting a separate post together to cover our experience. (Don’t worry. Even though it’s about the scary, seven letter “S” word, it ends on a positive note.)
  • Back home in Nashville, Solly participated in a weekend of Anat Baniel Method intensive lessons. We loved seeing some of our friends there – and even met some new ones – and, of course, spending time with our ABM practitioners Jan and Mary.

It’s been a whirlwind two months, but thankfully we are staying put in Nashville for awhile. We’re getting Solly set up in new therapies, reconnecting with some of his old (pre-HBOT) therapists, and ramping up for some intensive therapies to help make the most out of some of the gains we saw from HBOT and Solly’s new, looser legs.

Off I go to a new feeding therapy evaluation with Solly where I will likely fill up my coffee cup one more time. Life these days requires quite a bit of caffeine, but Solly and Bea sure make it all worth it!