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!

 

Wrapping Up HBOT

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When we first started hyperbaric oxygen therapy, the idea of doing 40 dives felt so daunting. Perhaps it was only because we could do one per day – or perhaps it was because the idea of being squeezed in a tube with a wiggly (and pinching, biting, and screaming) toddler was a bit too much. But when we packed up Solly and Bea to head to our 40th and final dive, I found myself already missing the very special one-on-one time I was able to have with Solly every day.

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Spending Mother’s Day with my boy

When I blogged about the gains we noticed after the first 20 dives, I mentioned that Solly was acting more like a 2 year old than he ever had before (hello, emotions!), he began making new sounds and even came close to using words, his normally tight limbs were becoming looser, and he had gotten strong enough to start bouncing when in a kneeling position.

With the second half of our treatment, we saw those gains continue to strengthen and grow. For example, in his new favorite bouncy move, he started to shift to almost walking on his knees, moving his legs reciprocally:

On top of those, we really saw him become more interactive with his surrounding environment. Instead of simply lying next to me and only playing with me or watching a show on the TV, he became more interested in sitting up and observing what was going on outside the chamber. He’d play peek-a-boo with the person in the chamber across from ours, mimic someone standing outside the chamber, or just be snoopy and watch what the technician was doing. It was really cool to see this awareness develop!

We’re excited to continue to watch Solly develop and grow as a result of HBOT, and we only hope that we can continue to build on these gains. But for now, it’s play time until we move onto the next big thing!

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Swinging in the park at Hilton Head Island

 

Halfway There

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This morning, Solly and I logged our 20th Hyperbaric Therapy Dive. We are now officially at the halfway point of this therapy treatment! Since I first wrote about this alternative therapy, Sol has made the following gains:

Hello, we are 2 years old

Overall, we are noticing that Solly is acting very much like a two year-old. For anyone who has previously met Sol, you know that he was a very quiet little boy who enjoyed quietly chewing on a toy and might give a shy smile.

Now Sol is quiet no more.

Anywhere we take him, Sol likes to be the one making the most noise. Walking through a grocery store, sitting at a restaurant, eating outside, or playing in the pool, this kid is now LOUD. And more than that, he is finding his range of emotions. One section he’s happy, excited, wild, and then the next he’s sticking his lip out with a tear forming in the corner of his eye. There’s no telling what version of Solly you will have at any point of the day. Because this is so much closer to a typical two-year-old than we’ve previously seen, we love it!

Making some noise while out to eat

What’s that you say?

Nope, we don’t have words yet, but, oh man, are we close. Almost immediately after we began hyperbaric oxygen therapy, we started hearing Sol say and make new noises, playing with the way he holds his mouth and moves his tongue. He is saying “hi” all the time and waving. Sometimes we think we hear him say certain phrases that we say to him all the time, like “how you doin'” or “all done”, but we haven’t gotten him to repeat them (yet).

Not only has Solly’s expressive speech made some gains, but he is also becoming more aware of and interacts with his environment. Prior to our travels for HBOT, Sol learned how to clap, but would only do it if we told him to. One day in the hyperbaric chamber, we were watching A Bug’s Life and as an audience of ants cheered, Solly started clapping. He also loves chatting with Bea and mimics the noises she makes.

Loosey Goosey

Right before we started the HBOT treatments, we began weaning Sol off of baclofen, which is a prescription muscle relaxer primarily prescribed to patients with Multiple Sclerosis. We decided to take him off the drug because we didn’t like the side effects, it didn’t really seem to be working well, and we’d found out that not only was it not FDA-approved for children under the age of 12, but studies have shown little efficacy in people who have had a stroke.

I was afraid that this would make him tight, but it seems as though HBOT has loosened up most of Solly’s tight muscles while helping his core stay strong. With the exception of tight hips, the rest of Sol’s body is nice and loose not only in the chamber, but at home, too.

Working on that balance

Bouncy, bouncy, bouncy

Sol’s new favorite activity is pulling himself into a low kneel after he’s been in a quadruped position, and then trying to bounce himself forward. Check it out:

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While most of these gains have been amazing, we have taken a step backwards in another area. Unfortunately, over the past two weeks, we’ve also been battling some of Solly’s recurring eating issues where he refuses to eat. While many say that this is typical for a two year old, it is extremely scary for us since Solly is already quite skinny for his height and has trouble keeping weight on. Since we have had these issues in the past, we don’t think they are related to HBOT, so we’ll keep moving forward and hope that Sol finds his appetite soon.

Breathing In

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Imagine being stuck in a glass tube  for over an hour while unable to sit up straight and with no contact with the outside world. Now imagine you also have a wiggly 2 year old laying next to you and Sesame Street and Frozen are being played on repeat.

Welcome to my life.

While this may sound like a personal hell to some – and I must admit, it isn’t all fun and games – this exercise is an alternative therapy, officially called hyperbaric oxygen therapy (HBOT), that is very promising for Solly. 

Sesame Street and HBOT

 

HBOT is what is typically used for divers suffering from the bends or, as has been highlighted in recent news, for concussions and other sports-related injuries. According to HBOT.com,

Hyperbaric oxygen therapy (HBOT) is a medical treatment which enhances the body’s natural healing process by inhalation of 100% oxygen in a total body chamber, where atmospheric pressure is increased and controlled.

It can do things like alleviate pain from Parkinson’s or rheumatoid arthritis, help restore hearing or vision, quickly heal wounds in war veterans, and more. For us, the idea is that Solly’s brain has damaged areas from the three strokes he had at birth. By flooding his body with oxygen, we hope to help heal these areas and allow his brain to create new connections.

I had first heard about HBOT early in the Fall of 2016, when I was about 4 months pregnant with Beatrix. We did some research into it and concluded that it would be worth our time and money to give it a try. Unfortunately, there are no HBOT centers in or near Nashville that will treat children. Because HBOT is not FDA-approved for cerebral palsy and Pediatric Stroke, not all HBOT centers will treat this population. Luckily for us, we found Hyperbaric Therapy of The Lowcountry, which is just a quick drive from my parents home on Hilton Head Island. This center has experience treating children with cerebral palsy – and they have seen great results in that population. So, at the beginning of April, we packed up our family and pups, put all of Solly’s traditional therapies on hold, and headed to HHI to begin treatment. 

A typical course of treatment for children with CP is 40 “dives” – or one hour spent in the chamber, pumping 100% oxygen at 1.5 atmospheres of pressure. To avoid potential oxygen toxicity, it’s generally recommended to only do one dive per day, so we are calling HHI home for the next few weeks. Many parents I’ve spoken to who have done HBOT for their children have reported seeing improved vision, decreased spasticity, increased mobility, increased speech, and more. It generally takes a while to see results, however, we are now 11 dives into our treatment and have already noticed that Solly is babbling more, is looser in his legs (despite us weaning him off of Baclofen, his muscle relaxer, for non-related reasons), and is more engaged with his environment. For me, it’s one hour a day that I get to spend alone with my sweet boy (which rarely happens anymore)!

We hope this treatment will help him to continue to make gains, but if nothing else, it sure is nice to have some beach time in the evenings and enjoy our little family of four without our typical weekly schedule of endless therapy and doctors appointments.

Getting in some OT on the beach!


Solly loves the sand