There’s No “I” in Team

Parenting a kid like Solly has taught me more than I could have imagined. I mean, I could probably write a book simply listing everything I’ve learned, from medical terms to therapy movements to assistive technology and more.

My biggest takeaway so far is this: it’s ok to disagree with a doctor, specialist, therapist and find someone who is a good fit for your child.

Growing up, we always heeded our doctor’s advice: when I dislocated my shoulder, we took an X-ray and I went to physical therapy; when my adult teeth started growing crooked, it was three years of braces for me. Simple and straightforward. However, what I’ve found over the past (almost) four years is that medicine, particularly when you’re dealing with a unique organ like the brain, is often times more an art than a science. There’s no one correct way to rehab that unique organ.

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Miss Laura teaching us how to handle Solly so we can encourage proper body positioning

It took me over two years before I realized that not all doctors and therapists are created equal, especially not for a medically complex kiddo like Solly. Part of the delay in learning this is because we were insanely fortunate to be paired with the perfect physical therapist less than one month after Solly was discharged from the NICU. Her name is Miss Laura, and she still keeps tabs on Solly’s progress even though we haven’t seen her since we moved away from Washington, DC. What I’ve found in physical therapy is that many institutions approach rehabilitation by setting goals for gross motor skills and then moving a child towards those goals even if they aren’t ready for them. And what I mean by this is a common goal for Solly in the early days was sitting, holding quad position, walking, etc. But, often times, he wasn’t ready for those goals and would grow frustrated with therapy sessions because the therapist was essentially forcing him into and holding a position that he wasn’t physically ready to do. Continue reading

A Field Trip

One of the biggest obstacles we currently face in Solly’s journey to walking is motivation. Solly CAN walk in his gait trainer – in fact, he walks quite quickly if he sees something he wants – but he has to have a solid reason to walk. That reason changes quickly. Lately, his motivation has been helium balloons, golf clapping and cheering, and high fives, however, we struggle to constantly come up with things that excite him enough to walk.

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We love Target!

So, instead of finding novel objects or cheers to motivate him, Nanny Jen discovered that taking him new places might be the trick. Last week, before his weekly OT appointment, she popped his Rifton Pacer in the trunk of her car and carted Solly over to Target where she plopped him, in his gait trainer, at the entrance of the store. There were new sights and sounds to motivate, not to mention people to impress. Solly spent a full hour walking and exploring the store. He still needed some cheering to get him going (a few shoppers stopped to root him on), but little things like the dollar section and a table with folded t-shirts piqued his interest enough to move his gait trainer along.

Just yesterday, we took another field trip over to our local park, where there is a paved pathway that’s perfect for walking. With his hat on backwards and Nanny Catherine cheering him on, he easily strolled around the park.

Our motivation issue has been solved, for now!

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Cute Kid at the Park

 

 

 

I Like To Ride My Bicycle

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An evening ride

Spring is peeking through the gray clouds here in Nashville. After getting stuck inside for much of the winter, we’ve been itching to spend some time outdoors. Since it’s now quite warm in the middle of the day, we’ve been taking advantage of the cooler mornings and evenings to take walks with Solly on his tricycle.

Solly’s bike isn’t an ordinary bike: it’s an adaptive tricycle made by Amtryke. It has extra support to help keep him upright, a handle so we can help keep him moving, straps for both his hands and his feet, and handle bars that move to help teach his body reciprocal movement. Continue reading

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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NAPA is Magical

On Day 1 of our 3 week intensive at the NAPA Center, which stands for Neurological and Physical Abilitation and is located in Los Angeles (and Sydney and soon-to-be Boston) and NOT Napa Valley, I proudly posted a photo on Instagram of Solly kicking butt and standing (with assistance) during the first hour of his intensive therapy. A Mama of another CP kiddo quickly posted: “NAPA is magical! I hope you have a great experience.”

I smiled as I read her comment, thinking to myself – yeah, yeah, I’m sure it’s great, but we’ve done intensive therapy before and I’m pretty sure I know how everything will go.

Nope. I was wrong. That Mama was right. NAPA is the most magical and amazing place on Earth. Solly made the most gains I’ve ever seen him make in a short time period.

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