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REHAB RECAP – WEEK 2

Ethan lying on bed

Rehab Recap – Week 1

Finally Making some Progress

Ethan needs prayers

WHEN MEDICAL LIFE TAKES OVER

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Hello & Welcome

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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Advocacy
Brain Injury
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@our.daily.adventures

our.daily.adventures

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

Daddy and Timothy came to visit this weekend 😍

Daddy and Timothy came to visit this weekend 😍
It was a bit of a last minute decision, but it was SO worth it 👏🏻👏🏻

Happy #rarediseaseday from our little guy. To all

Happy #rarediseaseday from our little guy.
To all of you fighting rare diseases, looking for answers, treatments, all those advocating, looking for hope. You are not alone. To all those who have lost someone, you are not alone.
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Having something rare can be isolating, but it doesn’t have to be. There is strength in numbers, in community. Let the fact of being rare be a connecting factor, not just the diagnosis because in the end, all of us fighting those rare diseases still have so much in common 💪🏻
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#tga #acutenecrotizingencephalopathy

The face you make when you’re still not tolerati

The face you make when you’re still not tolerating your feeds, despite a formula change.
I tried calling the g-tube nurse today but of course she wasn’t in the office all day so we’ll try again tomorrow.
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I just want and need him to stop vomiting bile. It’s no fun, and dangerous. They will probably trial him on an even more broken down formula tomorrow. He tolerates pedialyte, so hopefully this formula will work? But then there’s still the question of why the sudden change. And we may never know? What we do know is that we need to get this reflux/vomiting under control and hopefully that happens soon.
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Despite all that, he’s the happiest little camper. Who hates clowns 🤡
#ethanstrong

Yesterday Ethan saw the Hyertonic Clinic to assess

Yesterday Ethan saw the Hyertonic Clinic to assess his excessive tone. Ethan has Dystonia, Muscle Spasticity and a General Hyperkinetic Movement Disorder. They’re all somewhat similar but bring forth slightly different challenges. The biggest thing is that he has little to no control over these issues and movements that come with them.
It leaves him arching and excessively moving his entire body. His muscles get tight. When he tries to move one part of his body, the rest of his body starts moving as well. His brain says “move this body part” but there is miscommunication and too many muscles start moving.
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These are a result of his brain injury. It definitely complicates things. Recovery, sitting, standing, all those things. The hope is that as he starts to gain strength he will find a way to counteract the movements. They’ve also increased his medication a bit that helps some patients (there’s a second one that can be started as well if needed) and there is still the option for his brain to rewire.
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Time will tell is the name of the game we’re playing, again.
We’re starting the process to apply for funding to get him an adaptive stroller for at home, which will give him the stability he requires. He has a lot of people working to get him what he needs and give him the best chance at recovery. Even our home team is already working and brain storming. We are so grateful for all the people we have working alongside us to help Ethan, which ultimately helps our entire family. ❤️
#ethanstrong

They say knowledge is key. One thing I’ve been t

They say knowledge is key.
One thing I’ve been thinking about is how we will get Ethans what’s needed once we return home.
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ANE is rare. Most doctors we talk to about it probably won’t know much about it, if anything at all, which means we will need to become experts on it and push for what needs to be done. And they need to listen, which they don’t always and that’s nerve wracking.
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Until we (hopefully) get a negative result from the genetic team (results take months), we will be treating Ethan as tho he has the mutation that would put him at much higher risk of relapse, which means treatment will need to happen when he starts showing certain signs of illness and further, seemingly drastic steps (IVIG and steroids) may need to follow if he starts showing neurological issues with or after that, which probably won’t happen locally as it’s a small town hospital and they can only do so much. Treatment that “normal” kids wouldn’t get. Or even “normal” adults.
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We will be coming up with a game plan before leaving rehab, and I’m doing my best to educate myself on this condition so I can be the best advocate possible, because I’m his voice and his life depends on it - no pressure.
#ethanstrong #rarediseaseawareness #acutenecrotizingencephalopathy

Ethan vomited bile again yesterday. Once in the mo

Ethan vomited bile again yesterday. Once in the morning and then the evening. Last night his HR went up too and he kept retching (because he’s GJ fed there’s not a lot in his belly besides bile). I’m amazed at how much bile he accumulated and throws up tho.
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He was put back on pedialyte and things settled. He’s not showing any signs of being sick, so we’re not sure why he’s not tolerating his feeds. It all started after his tube change, but placement looks fine, so who knows.
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He’s got several therapies booked for today and we’ll need to game plan regarding his feeds. Hopefully he starts tolerating everything again soon 🙏🏻
He also sees the Botox/Hypertonic Clinic tomorrow morning to see if they can help with his excessive tone 🤞🏻

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Canadian Mom Blog 2020