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REHAB RECAP – WEEK 2

Ethan lying on bed

Rehab Recap – Week 1

Finally Making some Progress

Ethan needs prayers

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The Reimer Family is a special needs family from Canada. We will update you on #MightyTimothy and #EthanStrong and hopefully inspire you along the way.

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The Unknown – A Weird Glimmer of Hope
It hits so suddenly
Time to let go
Don’t Close your eyes to the hurt around you
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mom to #mightytimothy and #ethanstrong sharing our medical life journey one square at a time.
📍Ontario, Canada

I tried this little setup for him today, and look

I tried this little setup for him today, and look at him go 😭😭😭

The fact that he didn’t push himself back into extension is huge for him! He used the cube chair to support him while playing his little game for about 5 minutes. And then flopped himself backwards into my lap 😂

It’s the perfect little set up for him, because his legs tuck under and he has some support on each side of his arms to help give him more stability.

Now excuse me while I go cry some happy tears 😭😭

#ethanstrong

When you have a child with a disability you are th

When you have a child with a disability you are thrown into a whole new world.

Lately, I’ve seen a lot of posts about ableism. What’s that?
“Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability.”

Honestly, there is SO much to learn about this world. And in reality, as a mom, I’m gonna mess up. I’m gonna say the wrong thing, use the wrong terms, etc. Not just as a MOM, but also as a mom who has a child with a disability.

Ethan has a disability.
There is SO much more to him tho.
It’s not my experience, it’s his. I’m not the one with the disability, he is.

I do, however, fight this battle WITH him.
So I share my side.
My thoughts.
We share the victories, the setbacks, in hopes to help others and that we can maybe make his world a better place.

I don’t want him to be defined by his disability, but rather by his abilities.
He doesn’t need to be fixed, but rather we fight for a life that will give him a bigger voice and more independence.

We’re all trying our best.
And I never want to take away from the voices of those living with disabilities. I’m a guest in their world, and hope to be as respectful as I can, which means I will continue to learn. I will never know what it’s like. I can only empathize, for his sake.

But I will also keep speaking up.
I will keep trying to encourage a world I want my children to grow up in.
A world of inclusion, a world that doesn’t see them as any less valuable because of a disability.

So let’s educate ourselves.
But also have grace.
We’re all learning, trying our best.

Ethan isn’t any less because of his disability.
He also isn’t any better because of it.
I’m proud of what he battles through and overcomes, but I would be just as proud of his accomplishments if he didn’t have these struggles.

He is Ethan.
Who has a disability.
But he also has so much more to him.

We have 3 genetic mutations. 1 is linked to cleft

We have 3 genetic mutations.

1 is linked to cleft and high arch palate. His is high, but overall it’s not causing issues. He does have a 50% chance of passing it onto his kids.

The second one is associated with hemiplegia and dystonia/Parkinsonism. We’re trying to see if Neuro thinks that maybe this is part of the reason he struggles so much with his tone, that maybe his brain injury started the Dystonia and he’s struggling more with it? Who knows. His brain injury certainly makes this all super cloudy, but it may change treatment approach if we can maybe figure out if one thing is triggering another. They’re not overly suspicious that this specific mutation is causing issues right now because he was fine tone wise before brain injury.

The third is associated with Epilepsy. This one isn’t a shocker because there is the family history. It does however set him up to struggle even more with this beast, because now he not only has 2 insults to his brain but also a genetic factor for it.

Now the other big kicker is that even tho the overall mutation has been seen for the second and third one, his SPECIFIC mutations have never been seen before. It’s like we know the colour is blue, but the specific shade is new. Which means we don’t really know how it will play out and affect him, because there is no one to compare it to. Ethan loves being unique.

We’re waiting to hear if Neuro has any thoughts on this changing treatment plans, but it most likely won’t.
In 1-2 years we can reach out to the lab again to see if any other cases have been found with his specific mutation, but again, the brain injury makes everything super muddy as we won’t know what’s causing what.

And realistically it probably wouldn’t even make a difference. We’ll treat symptoms as they come up, just as we have been.

We knew the Genetic workup wouldn’t give us a magical answer, and while we know SOME more information, it’s still all a “we don’t really know, it’s a wait and see” game.

#ethanstrong

Timothy has been thriving with the new basement sp

Timothy has been thriving with the new basement space. He absolutely loves it, it’s his happy space.

He has room to lay out his train tracks again, play and we even got him his own desk to use as a craft station, and he’s been so excited to use it all.

Sometimes I question if we’re able to balance things enough between the boys, but then I watch Timothy flourish and be so happy, and I realize that at the end of the day, we’re doing okay and he knows that he’s just as valued as his little brother ❤️

Today was a rough day. Lots of tears, sad snuggle

Today was a rough day.

Lots of tears, sad snuggles and we reset our seizure clock 😭

Today has left me absolutely exhausted and heartbroken for him.
Hopefully tonight he will sleep well, that tomorrow will be better and that today was just an off day 🙏🏻

#ethanstrong

We were finally able to (mostly) finish the main r

We were finally able to (mostly) finish the main room of our basement.
It’s been out of commission since mid-July right before Ethan was re-admitted to Rehab due to flooding.

Overall, the basement still has a lot of work to be done, but I’m glad that for now the boys have lots of space to explore and play again. The other 3 rooms will get fully finished throughout this week and then it’s d o n e.

Plus it’s so bright, I absolutely love it 😍

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