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

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

 

 

 

Quick Update: The Hip Situation

A bit of good news for hump day

Hip health is a major concern for many people with cerebral palsy. The reason behind this is largely because spastic (tight) leg muscles can pull the hip out of the socket, causing hip dysplasia where the ball of the hip joint isn’t fully covered by the hip socket. The surgery to correct this is a major one with a long, painful recovery.

In other words: this is something you want to avoid if at all possible.

This is why, against our local doctors’ recommendations, we decided to have Solly undergo selective percutaneous myofascial lengthening (SPML) last year to give his tight muscles a release along with alcohol blocks to help loosen them up. If you’re new to our blog, I wrote a couple of updates on SPML at 2 months and at one year post-op, and also gave an update on Solly’s hip health at 6 months post-op. This surgery was a game changer for Solly’s gross motor development, giving him the opportunity to move his legs more freely so he can now walk in a gait trainer and independently propel his tricycle. Continue reading

Head of Ring Security

This past weekend, my eldest nephew, Reid, married his best friend, Katie. The wedding party included eleven beautiful bridesmaids, eleven handsome groomsmen, a very sweet flower girl, and Solly as the ring bearer.

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Solly and Reid

My heart soared when Reid and Katie asked Solly to be their ring bearer late last year, especially when I overheard Katie tell him: “Now, Solly, we don’t care how you get down the aisle. You can walk, you can ride in a wagon, you can be carried, we don’t care. We just want you to be a part of our day.” (How lucky are we that Katie is now a part of our family?!) And the inclusion didn’t stop there: every time anyone in their wedding party saw Solly at any of the wedding events and over the wedding weekend, it was “oh, hey Solly, how’s it going?” even though every single person who said hi to him knew it was very likely that Solly would just respond with a “hi” and a wave. This approach to including Solly is how I wish the world would include anyone with a physical or intellectual disability.  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.

Continue reading