Solly is a #StrokeHero

This year, Solly was recognized by the American Stroke Association as a Stroke Hero. I submitted his story for consideration to help raise awareness that infants and children can and do have strokes – that it isn’t as uncommon as doctors say it is, that there are therapies and procedures that can make a huge difference, and that after a stroke or cerebral palsy diagnosis, life can be wonderful. I was so happy and honored when they chose to include Solly’s story, which was shared on the American Stroke Association’s Facebook page on August 20th.

See the full post here.

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Learning to Move with ABM Lessons

Over the past 2 years, I’ve referenced ABM lessons a number of times without going into detail about what this is and how we came across it. So, finally, after much success with ABM, I sat down and wrote this post about how we began with the Anat Baniel Method.

Have you ever sat and watched an infant’s body learn? It seems as every part of them moves at all hours of the day, twisting and turning, exploring, learning where their body is in space. These movements are repeated thousands of times, helping to build the muscles necessary for sitting up, crawling, walking, jumping, all gross and fine motor skills that are typically developed. When the brain is damaged in infancy, the body skips out on many of these movements, causing developmental delays like what we’ve seen with Solly.

When Solly was an infant, I think I always knew he wasn’t moving as much as a typical baby, but it never struck me how few of those subtle, brain-building movements he was making until Bea came along.

In the Fall of 2016, I was poking around the Internet, looking for new therapy ideas and resources because Solly was stuck in a rut. One year prior, I’d been so excited to move to Nashville and gain access to a new team of doctors and therapists to help Solly continue to thrive, but over the year, I felt like our gains grew smaller and smaller. Solly was hitting a plateau. I was growing concerned that this was it – there were no more gains to be made. (A crazy thought considering Solly was just two years old!)

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Count Your Blessings

When we were on vacation, we received some news that isn’t great.

Don’t worry: Solly is healthy and happy and nothing about that has changed. I’ll write more specifics later, but, in short, we were notified by a specialist that Solly might not be a candidate for SDR, a potentially life-changing surgery that would permanently eliminate his muscle tightness. We have to do some legwork – a sedated MRI and a consultation in St. Louis – before we know the answer.

But, this post isn’t about SDR. It’s about how I deal with potentially bad news.

img_1821When you parent a medically complex child, you quickly learn that this life is an emotional roller coaster. One day your child does something amazing, something that doctors predicted he would never be able to do, and then the next day, his journey takes a step backwards – or, on some days, many steps backwards. As easy as it is to wallow in bad news and feel down about whatever that backwards step is, I’ve found that allowing those negative feelings to stick around is not only not productive, it also tends to rub off on Solly and Bea. If I choose this route, no one is happy and we remain at a standstill until I’m able to dust myself off and move forward. Continue reading

An Addendum: Walking in Target

Moments after I published yesterday’s blog post, I received the following text message from Solly’s nanny who was with Solly at Target. I thought it was too cute to keep to myself:

If you ever want to feel better about life, take Solly to Target in the morning. He was mesmerized by a solder, saw his Target BFF (the lady standing next to him in the photo below), and he fell in love with a man who encouraged him and gave him knuckles. Not to mention, every person that walks by him says hi and smiles at him! Oh, and this little kid came up to him and started talking to him! It was so adorable. Literally the whole store walks by and encourages him.

Like I’ve said before, the best way to start a conversation with someone who has special needs is to simply say “hi”. Or, you know, cheer and give words of encouragement when you see a cute kid working really hard to walk in his walker. Inclusion is awesome.

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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