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Advocacy/ Brain Injury/ Medical Parent Life

Balancing the good and bad emotions

Our journeys are all different.No two stories are the same.They may be…

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CHD/ The Heart

Congenital Heart Defects

I didn’t know much about them until we didn’t have a choice…

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Advocacy/ Parenting

Accessibility Issues

Can we talk about accessibility? Or lack there of? I never realized…

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Brain Injury/ Grief and Brain Injury/ Medical Parent Life

Dear one year younger me

Dear one year younger me,It gets better.You will learn to cope, mostly,…

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Brain Injury/ Grief and Brain Injury/ The Brain

Ambiguous Grief

Ambiguous Grief.Is the grief experienced by the loss of a loved one…

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Advocacy/ Brain Injury/ The Brain

Dear Everybody

Dear everyone,Just because we’ve had lots of admissions, tests/procedures and countless emergency…

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Nutrition/ Tube Feeding

G-Tube FAQ

I recently posted a button change video on Instagram and got lots…

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Advocacy/ Brain Injury/ Parenting/ The Brain

How did I miss this truck coming right at us?

Sometimes, some days I feel fine. Maybe things will be ok (whatever…

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Ethan Strong/ Our Brain Injury Journey

Neuro/Seizure Update

We’ve had some pretty….crappy feeling? discussions with Neuro this week and the…

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

Missing the way things should have been

Today is one of those “missing the way things could have and…

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  • 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…

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  • 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…

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  • 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…

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  • ethan in creepster crawler
    In Development/ Equipment & Tools/ Therapy

    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…

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  • ethan sitting and looking up
    In Brain Injury/ The Brain

    It hits so suddenly

    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…

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  • timothy kneeling at park
    In Advocacy/ Parenting/ Parenting Talk

    Choose your words wisely

    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…

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  • 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…

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  • 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…

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  • In Development/ Equipment & Tools

    Ethan got his Upsee

    Ethan says “check out my new gear!”Last week we received Ethans Upsee. It’s a mobility device by Firefly that allows children to move and…

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  • In Advocacy/ Parenting/ Parenting Talk

    Don’t Close your eyes to the hurt around you

    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…

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ABOUT ME

Sandra is a photographer and blogger who lives in Ontario, Canada with her husband and two sons Timothy (6) and Ethan (2). Sharing her story as a mom to children with complex medical needs, her goal is to provide education, awareness and a place of community for families walking a similar path.

SOCIAL MEDIA

Find us on Instagram

our.daily.adventures

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

Eeeeeek, this little dude modelled today for @wool Eeeeeek, this little dude modelled today for @woolydoodle and their “Bright Side” Collection that’s dropping March 14th. He was such a charmer, as always.

When they asked if I could bring one of his mobility devices I knew I had to bring his Scooot from @fireflybyleckey because not only is it stylish and easy to bring along, but it fit right in with all the bright colours 🥰

I can’t wait for warmer weather so we can take the Scooot outside and roll around the neighbourhood 😎

#woolydoodle #fireflybyleckey #fireflysuperfan #ad #scoootbyfirefly #mobilityaid
Even the best superheroes sometimes need a little Even the best superheroes sometimes need a little lift 🥰

Tomorrow morning at 7:20am est Ethan and I will be doing our live interview with @breakfasttelevision to talk about our experience at @hollandbloorview and the #capesforkids Fundraiser.
You can watch it online at CityTV as well, and we’ll try to find a way to share it with you here after if you can’t access it.

Sharing our journey isn’t always the easiest, and there’s lots we don’t share, but I’ve always said if it helps just one person it’s worth it. And it has. I’ve gotten so many incredible messages, and the community we’ve found is beautiful.
Thank you for being part of our story.
I can’t wait to share it with more people tomorrow morning and hopefully encourage people to help kids like Ethan 💚
Just a little dude ready to conquer the world with Just a little dude ready to conquer the world with those wakin’ boots 💪🏻

We got a walker to take home and will be starting the process of getting him his own 👏🏻

He gets so excited when he sees it, it’s so sweet.
Now excuse me while I magically add a couple hours to each day to squeeze walker time in 😅

Also, how about that itty bitty belly peeking out 😅🥰

#ethanstrong
Just in case you need a reminder: Inclusion is wi Just in case you need a reminder:

Inclusion is within everyone’s ability.
Telling your story Is the act of recalling all of Telling your story
Is the act of recalling
all of the things
you’ve learned from travelling,
and then, figuring out
how to share those lessons
with someone else
who is about to take that same trip.
-MHN
🖤🤍It’s Rare Disease Day🤍🖤 Ethan was 🖤🤍It’s Rare Disease Day🤍🖤

Ethan was diagnosed with Acute Necrotizing Encephalopathy in Dec. ‘19 which caused his brain injury. ANE is a disease characterized by encephalopathy ensued by varying degrees of brain injury. ANE usually follows an acute, mostly viral, infection. Influenza is the leading associated virus. The symptoms of the viral infection (fever, respiratory infection, and gastroenteritis, among others) are followed by seizures, disturbance of consciousness that may rapidly progress to a coma, liver problems and neurological deficits.

“It’s so rare that we are not able to give an incidence number. So, in medicine we like to say how common something happens in a certain percentage of a population, say per 1000 or 100,000, but it is so rare that at this point we aren’t able to give it a number”.
Dr. Michael Esser 

The Rare Community sticks together because together we are stronger 💪🏻

🦓 While each disease may be rare, it’s currently estimated that 3.5%-5.9% of the worlds population is dealing with a rare disease
🦓72% of rare diseases are genetic and 70% start in childhood
🦓there are over 6,000 identified rare diseases
🦓 it often takes years for someone to get a diagnosis and people are often misdiagnosed (initially)
🦓due to rarity and diversity it can be hard to navigate research and treatment as international communication needs to happen for care providers
🦓having a rare disease community is often met with loneliness and frustration because not only can it be hard to find people in similar situations but healthcare providers may have limited or no knowledge about the disease
🦓people with a rare disease will end up learning/knowing more about it than their health care providers - because how else will we know what to advocate for
🦓sometimes we need to think Zebra, not horse
Load More... Follow on Instagram

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Latest Posts

  • Balancing the good and bad emotions

    February 16, 2021
  • Congenital Heart Defects

    February 4, 2021
  • Accessibility Issues

    February 1, 2021
  • Dear one year younger me

    January 23, 2021
Facebook Instagram

our.daily.adventures

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

Eeeeeek, this little dude modelled today for @wool Eeeeeek, this little dude modelled today for @woolydoodle and their “Bright Side” Collection that’s dropping March 14th. He was such a charmer, as always.

When they asked if I could bring one of his mobility devices I knew I had to bring his Scooot from @fireflybyleckey because not only is it stylish and easy to bring along, but it fit right in with all the bright colours 🥰

I can’t wait for warmer weather so we can take the Scooot outside and roll around the neighbourhood 😎

#woolydoodle #fireflybyleckey #fireflysuperfan #ad #scoootbyfirefly #mobilityaid
Even the best superheroes sometimes need a little Even the best superheroes sometimes need a little lift 🥰

Tomorrow morning at 7:20am est Ethan and I will be doing our live interview with @breakfasttelevision to talk about our experience at @hollandbloorview and the #capesforkids Fundraiser.
You can watch it online at CityTV as well, and we’ll try to find a way to share it with you here after if you can’t access it.

Sharing our journey isn’t always the easiest, and there’s lots we don’t share, but I’ve always said if it helps just one person it’s worth it. And it has. I’ve gotten so many incredible messages, and the community we’ve found is beautiful.
Thank you for being part of our story.
I can’t wait to share it with more people tomorrow morning and hopefully encourage people to help kids like Ethan 💚
Just a little dude ready to conquer the world with Just a little dude ready to conquer the world with those wakin’ boots 💪🏻

We got a walker to take home and will be starting the process of getting him his own 👏🏻

He gets so excited when he sees it, it’s so sweet.
Now excuse me while I magically add a couple hours to each day to squeeze walker time in 😅

Also, how about that itty bitty belly peeking out 😅🥰

#ethanstrong
Just in case you need a reminder: Inclusion is wi Just in case you need a reminder:

Inclusion is within everyone’s ability.
Telling your story Is the act of recalling all of Telling your story
Is the act of recalling
all of the things
you’ve learned from travelling,
and then, figuring out
how to share those lessons
with someone else
who is about to take that same trip.
-MHN
🖤🤍It’s Rare Disease Day🤍🖤 Ethan was 🖤🤍It’s Rare Disease Day🤍🖤

Ethan was diagnosed with Acute Necrotizing Encephalopathy in Dec. ‘19 which caused his brain injury. ANE is a disease characterized by encephalopathy ensued by varying degrees of brain injury. ANE usually follows an acute, mostly viral, infection. Influenza is the leading associated virus. The symptoms of the viral infection (fever, respiratory infection, and gastroenteritis, among others) are followed by seizures, disturbance of consciousness that may rapidly progress to a coma, liver problems and neurological deficits.

“It’s so rare that we are not able to give an incidence number. So, in medicine we like to say how common something happens in a certain percentage of a population, say per 1000 or 100,000, but it is so rare that at this point we aren’t able to give it a number”.
Dr. Michael Esser 

The Rare Community sticks together because together we are stronger 💪🏻

🦓 While each disease may be rare, it’s currently estimated that 3.5%-5.9% of the worlds population is dealing with a rare disease
🦓72% of rare diseases are genetic and 70% start in childhood
🦓there are over 6,000 identified rare diseases
🦓 it often takes years for someone to get a diagnosis and people are often misdiagnosed (initially)
🦓due to rarity and diversity it can be hard to navigate research and treatment as international communication needs to happen for care providers
🦓having a rare disease community is often met with loneliness and frustration because not only can it be hard to find people in similar situations but healthcare providers may have limited or no knowledge about the disease
🦓people with a rare disease will end up learning/knowing more about it than their health care providers - because how else will we know what to advocate for
🦓sometimes we need to think Zebra, not horse
Load More... Follow on Instagram

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