Tag: Pediatric Stroke

Taking A Pause

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It’s been a rough couple of weeks.

Bea’s been whiny. She hasn’t been sleeping, eating, or wanting to do anything other than hold my hand. Solly has been cheerful as always, yet somehow not acting himself – running a little warm, not eating great, just a little off. I’ve been exhausted. More so than usual. We’ve been struggling to get anything done other than keeping ourselves fed, staying cool in the summer humidity, and getting in bed at a reasonable hour.

Something just hasn’t been right.

Then, last Monday, Bea started sticking her fingers in her ears. She was jumpy at any noise, crying unusually hard when Solly spoke too loudly or when the dogs barked. She threw a fit – a full-on two year-old’s meltdown at only 16 months old – immediately when she didn’t get her way.

Something wasn’t right. Continue reading →

NAPA is Magical

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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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Living in the Past

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I try not to be a dweller. I like to live life looking forward, basking in positivity and finding the good in any situation. Anything that has happened occurred simply to mold me into the person I am today, so there’s no reason to have regrets and worries about the past.

This tends to be my attitude towards any event, except for the day of Solly’s birth. Even three years later, thinking back on that day and the following month in the NICU puts a wrench in my stomach and tears at my heart. It’s hard to revisit that time. I can’t even look at the blog posts I wrote while we were in the NICU. I just can’t. Not yet.

SollySmileHowever, when my sweet friend, Laura, asked me to share Solly’s story as an Inspirational Kid for her website Paisley’s Purpose, I knew I had to man up and revisit that time. Even if it could give solace to just one other Mama following a similar path, it would be worth it. So, in just over 1,000 words, I revisited those hard first days in our journey with Solly. The post goes into a little more depth than I’ve ever written about that day, so for those who are newer to our story, it might be worth a read. Read it here.

Another Walk in the Park

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We struggle with motivation. I always get a little envious when I see other babies just sit and play with toys or get up and walk toward their favorite stuffed animal. Bea would do just about anything for an episode of Sesame Street or for her Elmo stuffed animals. Nothing like this ever works for Solly. He’d rather just sit and chew on whatever is in his path than press buttons on a toy or play with a toy car.

This has made therapies – both in a clinical setting and at home – rather difficult. It’s impossible to work on Solly’s strength or functional movement if all he wants to do is hunker down and chomp on a puzzle piece. If a 3 year old doesn’t want to do the work and isn’t interested in anything that will trick him into doing the work, how can we make any gains?

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One, Two, Three, Kick, Kick, Kick

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Solly’s schedule is filled with endless therapies and doctors appointments, sometimes up to 4 appointments a day. Last week, I think we hit an all-time appointment record with 15 appointments in one week! While we’ve adjusted his therapies to try and have as many “fun” therapies as possible and Solly generally comes out of each appointment with a big ol’ smile on his face, I still sometimes worry that he’s missing out on typical toddler fun activities. I find myself wondering, how can I get my special needs kiddo involved in something that other kids his age or of his ability might be interested in that isn’t therapy?

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