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“How can you be grieving when your child is still here?”

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REHAB RECAP – WEEK 13

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Having a Child with CHD: What we wish you knew

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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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National Air Ambulance Week – Ornge Transport
“How can you be grieving when your child is still here?”
Capture the Chaos
Rehab Take 2 – Week 4
Rehab Take 2 – Week 3

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mom to #mightytimothy and #ethanstrong sharing our medical life journey one square at a time.
📍Ontario, Canada

Today we tried the Rifton Pacer. It wasn’t perfe

Today we tried the Rifton Pacer. It wasn’t perfect, and it needs a lot of work and practice, but I took some videos, because I’m sure in a few months we’ll be amazed by the progress he’s made and we’ll look back at this and really notice the difference.

We’re more aiming at weight wearing and getting the general idea of movement vs actual walking practice. He needs to learn some more basics first, but the exposure is nice.
We can tell he so badly wants to move, and we’re hoping that by exposing him to different scenarios it will motivate him even more to figure things out.

Our Monday Physio trips are exhausting, as we drive over an hour each way to get there and back. But it’s worth it. The more hands on therapy we can get him the better 👏🏻

Oh, and I actually caved today and bought an Iced Coffee. If you know me, that’s a BIG deal, because I don’t drink coffee. But no night nurse plus a Physio trip left this mama desperate. Verdict: it’s still gross 😂

Did you know there is a worldwide Pandemic right n

Did you know there is a worldwide Pandemic right now?
You did. How couldn’t you. It’s EVERYWHERE. It’s consuming everything. Everywhere you look, people are talking about it. Restrictions, closures, masks, distancing.

But guess what.
The rest of life is still there too.

Parents are still losing their kids.
Kids are losing their parents.
A Cancer diagnosis.
Heart disease.
Accidents.
Injury.
Sickness.
Loneliness.
Anxiety, grief, depression, house fires, floods. You name it.

It’s still there.
Those problems didn’t just go away.
They didn’t get put on pause to make room for the pandemic. That sucker just barged on in and took over.

But please.
Don’t forget about the non-pandemic pain around you.
It’s still there.
It’s still hard.
In fact, it’s probably harder because support systems are lost.

Imagine a mom, in the waiting room, alone while her child has surgery.
Imagine your neighbour dealing with depression and it spiralling because no one is there to notice.
The spouses and children worse off at home with nowhere to go because it’s not safe, but home isn’t either.

Don’t block that out.
I know we may not be able to physically go be with people, but find a way to be supportive.
Call.
Text.
Check in.

Please.
Because what’s starting is really bad too.
A mental health pandemic.
People burning out.
People suffering alone.

Don’t get too caught up in the chaos to not see the hurt that’s right in front of you.

And if you’re hurting, be brave and reach out.
And if someone reaches out to you, support.

One of Timothy’s new classmates can’t speak ve

One of Timothy’s new classmates can’t speak very well and uses sign language. He picked up our flash cards and was going through them, trying to remember some signs so he could communicate the same way his friend does.
His heart is absolutely incredible.
She can hear fine, but he doesn’t want her to be alone with how she speaks.

We’ve also been thinking about introducing some signs to Ethan again. His coordination doesn’t necessarily allow for him to sign right now, but we want him to start getting more familiar with the concept.
We tried for a bit several months ago but it somehow became less of a priority. I think my brain subconsciously thought it meant we were giving up on his ability to speak.

But he needs a way to communicate, and if sign language can help that process, we need to give that to him, and realize it doesn’t mean we’re giving up. We’re just opening up another door for him, while continuing to help him build his verbal communication skills.

The face you make when the eye doctor tells you yo

The face you make when the eye doctor tells you your eyes look great 👏🏻👏🏻

Back in December Neurology was worried that the Brain Injury affected Ethan’s vision. They suspected Cortical Vision Impairment.

Today we finally got in to see the Eye Institute and she’s happy to say that she doesn’t think he has CVI.

She thinks it was a short term impairment that corrected itself as the inflammation went down 👏🏻
We could tell his vision had definitely improved over time, and I’m so happy to hear that all looks well from a professional standpoint as well.

We need wins like this! 💪🏻

#ethanstrong

Look who has been working hard 🥰 With being ab

Look who has been working hard 🥰

With being able to calm down easier and focus better his progress has been so much more noticeable.

His OT session today was great! He was sooooo happy and did wonderful 👏🏻
He even sat on his own for a few seconds! 😭

I won’t lie, we’re not where we thought we’d be by now. When we started this Brain Injury Journey we figured he’d be further along with his skills, but brain injury is tricky. If there is one thing I’ve learned is that every person is different, recovers different and handles it all different. You can have 2 people with the same injury, and they will progress at their own level.

There basically is no predicting the future. I’ve met several families where they were told to expect pretty much nothing and their child is making gains. Or kids who have minimal damage show up but they’re affected more than anyone expected.

So, Ethan will recover at HIS pace.
As much as I’d love to know how much and how soon he will be able to do specific things, there is absolutely NO way to know, and that’s not the most comforting either.
But we’ll take it one day at a time.
One victory at a time.
No matter how big or small 💪🏻

#ethanstrong

Big smiles for a kiddo who is feeling better today

Big smiles for a kiddo who is feeling better today (this photo is from last weekend but everyone loved his big smile so much I figured it needed it’s own spot on the Instagram feed)

Tonight we start our weekdays without Night Nursing. Let’s just hope he’s not up at 4:30am again and behaves well.

Side note: I’ve gotten several messages regarding night nursing. How others wish they could hand their kid off to someone else so they can sleep. How he’s probably too healthy to have that anyways. And so on.

While we are grateful for the opportunity to have night nursing in place, it’s not something that’s taken lightly. It’s not something the nursing agency takes lightly (because it costs money!). You don’t actually WANT to be able to “hand” your child off to someone else. If you get a friend to come help, sure. But in order to qualify for shift nursing your child needs to meet a certain level of sick.
Which brings me to my next point. He’s not “too healthy” for it. Are most of his nights uneventful? Yes. And we are grateful for that. Are some nights really difficult? Yes, and that’s where nursing is really needed. He has a significant brain injury which has made him more susceptible to seizures than ever before, seizures that need to be dealt with quickly if they last too long. He gets overnight fluids through his tube and is prone to aspiration, so if he vomits/refluxes someone needs to help him. Cardiac issues, tone issues, respiratory issues, the list goes on.
For 8 months he basically woke up every morning around the 4am mark. Which is EXHAUSTING, and his daytime care is full time and requires an alert mind, which nursing helps us get as we are able to properly sleep knowing he is taken care of at night.

Can we make do without it? Yes.
Is he safer having that resource in place, absolutely.
And we are SO grateful for the nights we do have someone taking care of him and pray we find a suitable replacement soon.

#ethanstrong

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