0 In Ethan Strong/ Our Brain Injury Journey

Neuro/Seizure Update

We’ve had some pretty….crappy feeling? discussions with Neuro this week and the expectation will now be that given his injury and his seizure history with the injury, he will have seizures.
Our goal and expectation until now has always been to get full control, and that’s now shifted. They will make changes to meds if he starts consistently having the clonic-tonic (the shaking ones you always see on TV) or a significant increase in the ones he’s currently having. The hope is still as few as possible, or none, but there won’t be an assessment to see if we need to change things every time he has one.

If he’s sick or experiencing things that are known to lower his threshold, the goal will be to get him through that right there and then and then keep going with the plan as long as he comes back to his baseline. She said they may and will probably change their presentation (which we’ve seen already) and he will have highs and lows with his threshold and how often he’s having them. We’ll adjust meds with growth spurts but otherwise, the next step would be to add yet another medication which we don’t want unless we absolutely have to, as he’s already on so many and they each have their own side effects – and it may not even work.

So now we’re left in this crappy feeling place where we shift his baseline and expectations/realistic goals. He will have seizures. He’ll have good days, weeks, maybe months, and bad ones and unless things start to worsen significantly and/or it’s affecting his daily life too much, this is our reality and this is the treatment plan. I’m torn about it. I get it. He’s on so many meds, and the reality is, he had the stroke at birth, the encephalitis in December, and the genetic link. The odds aren’t in his favor. But this is my little kiddo. It breaks my heart every time seeing him struggle. Unfortunately, this reality is common for kids like him, but it sucks. There’s a couple of options we’re inquiring about but everything is a balancing act. How do I not give up hope that we may one day defeat this beast of this is the reality that’s in front of us right now?

0 In Brain Injury/ Ethan Strong/ Our Brain Injury Journey/ The Brain

Missing the way things should have been

ethan sitting at park

Today is one of those “missing the way things could have and should have been” days.He’s making some great progress, and we’re super grateful to get to watch him make that progress, don’t get me wrong, but things SHOULD be different.

Timothy picks up on it too. He quite often says he wishes Ethan could ______. That if Ethan didn’t have his brain injury he would be able to _______. That he wishes Ethan never had his brain injury so they could _________. Your babies aren’t supposed to step back in their milestones. Some of the things he could do effortlessly over a year ago now seem so far out of reach

He should be walking, talking, running, maybe even eating. We worked so hard to get to where we were, and he was doing beautifully. Crushing milestones. We will continue to work hard, to get back whatever we can. And he is doing beautiful, it just all looks so very different. In 1.5 months we’re going to hit the 1-year mark. As that time creeps closer, emotions run higher.

I wish there was a way I could go back and yell at myself, tell myself to watch out, that life is about to change forever. But I can’t, so here we are. And here I find myself, getting waves of could have been, should have been. And it sucks.

0 In Ethan Strong

Genetic Results are in

Several months ago we sent in samples to do a WES Genetic test. Whole Exome Sequencing. To see if there is a genetic reason why Ethan is, Ethan.

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 the 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 the brain injury.
The third is associated with Epilepsy. This one isn’t a shocker because there is 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. This 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.

0 In Brain Injury/ Ethan Strong/ Our Brain Injury Journey/ The Brain

Brain Injury is full of Unknowns

Brain Injury is full of unknowns.
“Time will tell.”
“We don’t know.”
“We don’t know if he’ll ____ and if he does, how well he’ll do it.”
“There is no way to know.”
“We don’t know about it.”

All things we’ve heard. And will continue to hear. It’s heartbreaking and hard. Because we want answers. But with brain injury everyone is different. Scans don’t even always depict what someone’s abilities will be. And if the one thing we can actually look at doesn’t give a clear idea of how things will turn out, what do we have to go by? He will do what he can, when he can, to whatever extent he can.

I was thinking about that this morning. About how scary, frustrating, and sad that is. But. It also gives hope. In some weird way. Because at the end of the day, it doesn’t matter what anyone says, he will do whatever he does. While they may be right for some things, they have just as much of a chance of being wrong. So, the unknown is absolutely incredibly frustrating.
But it also leaves room for hope in this weird little way, because we just don’t know. They don’t know. I mean, whatever happens, happens. And it may just be (hopefully) a whole lot better than anyone could ever bargain for 💪🏻So here is me, trying to hold onto that tiny weird glimpse of hope, because I have to. It will often get drowned out by the heartache and frustration of it all, but I know it’ll always be there, as long as we’re fighting.
And we’ll never, ever give up

0 In Brain Injury/ The Brain

The Unknown – A Weird Glimmer of Hope

Brain Injury is full of unknowns.

“Time will tell.”
“We don’t know.”
“We don’t know if he’ll __ and if he does, how well he’ll do it.”
“There is no way to know.”
“We don’t know about it.”

All things we’ve heard.
And will continue to hear.

It’s heartbreaking and hard. Because we want answers. But with brain injury everyone is different. Scans don’t even always depict what someone’s abilities will be. And if the one thing we can actually look at doesn’t give a clear idea of how things will turn out, what do we have to go by?

He will do what he can, when he can, to whatever extend he can.

I was thinking about that this morning.
About how scary, frustrating and sad that is.

But.
It also gives hope.
In some weird way.

Because at the end of the day, it doesn’t matter what anyone says, he will do whatever he does.
And while they may be right for some things, they have just as much of a chance of being wrong.

So, the unknown is absolutely incredibly frustrating.
But is also leaves room for hope in this weird little way, because we just don’t know. They don’t know. I means whatever happens, happens. And it may just be (hopefully) a whole lot better than anyone could ever bargain for 💪🏻

So here is me, trying to hold onto that tiny weird glimpse of hope, because I have to. It will often get drowned out by the heartache and frustration of it all, but I know it’ll always be there, as long as we’re fighting.
And we’ll never, ever give up 💪🏻

0 In Development/ Equipment & Tools/ Therapy

Creepster Crawler

ethan in creepster crawler

We tried out a new fancy tool today, introducing: The Creepster Crawler

It’s a device used to help assist with crawling, by taking the weight of his body however much needed and also allowing us to have free hands to help guide his movements. He tolerated it super well and tried so hard to move forward

He was also incredibly fascinated with the entire frame and wanted to eat it and check out the top too. I love watching him try all these new things, letting him explore and learn such important skills. The amount of fun equipment that’s out there is absolutely incredible.

0 In Brain Injury/ The Brain

It hits so suddenly

ethan sitting and looking up

Today in one of the Facebook groups I’m in, a mom asked how her daughter could have gotten sick so fast. She went to school fine that morning and she was really sick in the ER that same afternoon.
So many comments told a similar story. It all happened so fast.

That’s our story too.
Ethan went down for his nap perfectly fine that day. This was him the day prior. Only to be found seizing in his crib 2 hours later. His owlet, charging in our room instead of on his foot because it just doesn’t charge fast enough.

I remember the rescue meds. Calling 911. Them working on him for so long. It was the first time we had been through a prolonged seizure, or even had to call 911 for one, and while this one was the worst he’d had, little did we know what had just started.

I’ve been thinking about his treatment. It took 12 days. 12 days till he started getting the treatment that would specifically target the Encephalitis because initially no one was too worried about what had just happened.
He was a child with epilepsy, after all, who had just received enough rescue meds to knock out a grown man. But one we started to realize something else was happening, we needed to try and piece it together. Post Viral encephalitis is rare, which didn’t help our case and I’ve wondered if that delayed treatment (which isn’t anyone’s fault) has impacted him negatively, because the sooner you treat the encephalitis, the better.

It just happened so fast.
But that’s how tragedies strike. Suddenly. Out of nowhere. At least for most of them. There’s always something that suddenly comes up that drastically shifts things.
In the blink of an eye things changed so drastically, and I’ve tried to see if there was anything we missed that could have changed how things played out, but there really doesn’t seem to be. And that bothers me, I won’t lie. You’d figure it would reassure me, but somehow it doesn’t. Because as a mom, why couldn’t I see this coming. Why couldn’t I help.

So how does one go from seemingly healthy so critically ill so fast?
I don’t even know.
But it happened.
And it leaves me feeling very vulnerable because who is to say it won’t happen again.

0 In Advocacy/ Parenting/ Parenting Talk

Choose your words wisely

timothy kneeling at park

Choosing the language our children grow up around is so important. It’s important we choose the language that lifts them up, encourages them, makes them feel included despite their differences.

Timothy has scars.
That is a fact.
We call them his battle wounds/scars. Because they’re a sign of what he’s survived. He says his scars made him stronger. He says his scars mean he can keep other kids from getting hurt. There must not be any shaming, talking down on them, none of that.

Ethan does and will use assistive devices. He may never walk “normal”. He has a disability, but that does not make him less of a person. Timothy having scars doesn’t make him less of a person. In fact, seeing how some adults seem to be dealing with this, it’s made him a better person than they are, and he is 6. And Ethan is 2.
If you talk down on either of my kids, you’re out.
Done.
No questions asked. And I don’t care if you’re family, friends, online acquaintances, or a random person at the grocery store. You do not get to limit my Children’s way of thinking for themselves and their abilities because of how you treat them or by what you call them.
Respect my children. Respect other children.Respect other adults. It’s not that difficult.
It’s 2020 guys, let’s be decent human beings, shall we.

0 In Brain Injury/ The Brain

Time to let go

Several months ago Shane and I were sorting through stuff in the basement and found Ethans UpSeat. It used to be Ethans primary seat for being at the table with us. We looked at each other, thinking about whether we keep it for him to use – unsure if he’d ever actually get to use it – or if we should get rid of it right there and then.

We decided to re-evaluate in October.
To see where he’s at.

While completely emptying the basement for our Reno’s it reappeared. Little sticky note and all.

I cheated today.
It’s not October yet, but close enough.
I was curious.

We said that if he’s not ready to use it by October we’ll get rid of it as we’re trying to minimize as much as possible (to make room for all the extra gear he needs 😅)

I put him in it, and while he was excited about it, he’s not ready.

I don’t even know how to feel about it.
He’s made so much progress.
And I’m grateful for that.
He’s much more stable in it than he was a few moths ago, and I’m grateful for that too.
So part of me doesn’t even know why it makes me sad.

Probably because he used it so effortlessly even on December 17th for breakfast, and hours later was stripped of his ability to use it, even 10 months later, and for who knows how much longer.
It’s another harsh reminder of our reality.

It’s this mixture of gratefulness and grief.

I’ve been trying to pass on the stuff that we cannot use anymore and that brings these confusing feelings. We need as much positivity as we can get.
So, our trusty UpSeat will find a new home

0 In Development/ Equipment & Tools/ Therapy

Starting with PEC Cards

We’ve been working on little flashcards as a communication tool. Pec Cards.

He gets 2 options through the cards, we ask him a question and let him decide which one he chooses. We let him pick between the songs ‘The Wheels on the Bus’ and ‘Baby Shark’ and guess which one he was eager to reach for.

He also gets instrument choices, yes or no options, animals and the goal will be that he will be able to more effectively let us know which choice he wants using the photos. Right now we don’t think he always knows exactly what everything means, but by responding to his choices we are teaching him that his choices make a difference and what they truly represent. It’s all about opening up the communication pathways and working on figuring out what will work best for him.