Category: Sol’s Progress

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

 

Just Keep Swimming

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In my past life, I remember when I would have a bad day in business school or at work, my best friend Jenn would send me this:

In the months since I last posted, we have subconsciously applied this attitude to Solly’s rehabilitation. We’ve learned to take everything in stride, focusing on solutions for his recovery and not the fact that he needs to recover. Ok, ok, I admit it, sometimes I still freak out and over-worry about something related to his recovery. And when I say sometimes, I mean like once a week, which is a huge improvement over 6 months ago. But, for the most part, we focus on moving forward, no matter how slowly.

I think when I started this blog, I envisioned a Cinderella story, one in which the fact that a stroke took away half of Sol’s healthy brain tissue would not matter – he would recover to lead a productive, “normal” (I still hate that word!) life. And, he very well may. I think he will. I don’t have any bad news that would suggest otherwise. I just think that I was expecting progress and recovery to happen much quicker than it is and because I never had any huge milestones to share, I didn’t bother updating the blog.

Silly me.

So. Here’s what’s going on: Solly isn’t sitting entirely independently, he isn’t close to walking, he still isn’t using his right hand, we are still struggling with eating, he doesn’t have any words yet….basically, we are still pretty far behind in all developmental areas. That’s the unsugarcoated version of life right now.

However, we are seeing progress in all areas. In sitting, there are moments of brilliance where he is sitting up perfectly straight on his own for a few seconds before either his back extensor muscles kick into overdrive or his abs collapse. This is a big improvement over a couple of months ago. We’ve been working on walking in a gait trainer, a slow process, but he will now occasionally take reciprocal steps. We will be getting a gait trainer to work on this at home. We’ve tried some new things with his right hand, including e-stimulation, and are noticing that he is paying more attention to it and is trying to incorporate it when he eats. On eating, he is now eating three small meals a day, tolerating about 5 different types of food, and still getting the majority of his calories from Pediasure, fed by bottle. He is making strides on both an open cup and a sippy cup. For speech, just last week we had a speech evaluation and while we found out that he is behind in speech (duh!), the therapist had some great ideas on how to help him communicate. We are now on the therapist’s short waiting list to start seeing her twice a week.

So this is where we are at. We are moving forward at a snail’s pace, but at least we are moving forward! One step at a time.

 

Inching Along

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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.

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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.

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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!

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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.

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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: