Progress is Progress

Once upon a time when we were just getting our sea legs in the world of therapy and diagnoses, I envisioned a time when Solly would magically get up and start walking. It seemed that every day a new video would pop up on my Facebook or Instagram feed that said something to the effect of “this child was told he’d never walk or talk, but look at him now” showing a video of a child taking his first steps at age 2 or 3 or 4.

When Solly was between the ages of one and two, I simply followed the process – therapy once or twice a week, working on some exercises at home, going to all suggested doctors appointments – and I waited. I waited for that magical moment where I could celebrate my son taking his first steps – delayed, but not too delayed – despite the doom and gloom prognosis doctors gave us in the beginning.

We never got that magical moment. In fact, during this time, Solly hit a plateau in therapy and stopped making any progress. I began to feel hopeless.

2f6590e0de122cba00a1978fb954def7--sandwich-boards-zen-attitudeIf you’ve been following our story for a while, you know that we started focusing on intensive and alternative therapies about two years ago, when Solly was two and a half. As a result, Solly hasn’t magically started walking yet, but he has made measurable gains. It might not seem like much to the regular Joe, but those who are closest to Solly have noticed how much progress he’s made. As we started noticing new developments, I started noting them in my head as “inchstones”, a term I’ve borrowed from Moms of special needs kiddos to celebrate when a gain isn’t quite a milestone, but is moving in the direction of one. Continue reading

The Last Six Weeks

I find it’s always hard to come back to the blog after taking a bit of a break: where do I pick up? Do I skip everything we’ve done since our last post or do I go back and cover every single little thing?

I’ve decided this time around to do a quick recap of the end of the year as we did some noteworthy things that I want to mention.

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Enjoying Nashville in the late Fall

In short, the last six weeks were a blur. Here’s what we did: Continue reading

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