We Joined The Trexo Walking Club

img_1563I once read that in order to create new neural pathways, a movement pattern must be repeated hundreds, if not thousands, of times. In practice, this proves to be true: we spent months and months helping Solly roll over and army crawl before he was able to do it on his own and we find that as we work towards more complex milestones, more and more work is needed. Putting in this amount of effort for every single inch- and milestone sounds nice and do-able in theory, but in reality, there is not enough time in the day for this much therapy.

I often find myself up in the middle of the night, researching techniques, procedures, medications, and more to help Solly recover to his full potential, which is how I found out about stem cells, SPML, hyperbaric oxygen therapy, and all the alternative therapies we’ve tried. It was during one such research session in the wee hours of the morning in the Fall of 2018 that I came across Trexo Robotics on Instagram.

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Always Celebrate the Inchstones

img_1608I’ve been working on a few new posts about our life in Los Angeles, but Solly just hit a new inchstone and progress is always a good reason for a quick update.

Last night, Solly started holding and drinking from a handle-free cup completely independently! It’s not perfect: he’s still making a mess with it, spilling water from the cup about 80% of the time and sometimes forgetting to bring the cup upright after taking a drink, but we can now proudly say that Solly can pick up a cup off of the table, bring it to his mouth, take a drink, and place it back on the table.

This is a huge accomplishment, especially for a kiddo who the NICU doctors once said would never eat or drink by mouth. We’ll continue chipping away towards all of Solly’s milestones, but today, we’re celebrating this inchstone and Solly’s progress.

Verbal Or Non-Verbal, That Is The Question

Is your child verbal?

How would you answer this question when you can understand the handful of words that your “non-verbal” child has and know that he can answer yes and no questions with 95% accuracy? Man, oh man, I struggle with this.

Sol’s language center was completely wiped out by the three strokes he had at birth. We’ve always firmly believed that he is not cognitively delayed and that he understood everything we said to him, even though his expressive speech was severely delayed. He started to have words after we did our first round of hyperbaric oxygen therapy¬†and his expressive speech has exploded since we did stem cell therapy back in March. To date, we figure that he has somewhere between 20 – 30 words, has just started stringing 2 words together, and, like Bea, will speak in his own language. (Sometimes I think Bea understands him as I will frequently find the two of them conversing back and forth.) 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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