I have nothing left to give
I laid awake at 3am scrolling through my phone when I came across a blog post that opened my eyes. It made me realize I can’t live like this anymore. Continue reading “Medical-Mom Burnout”
Category: Special-Needs Parenting
Maddison’s Exercise Routine
Hypotonia exercises to help meet developmental milestones
Doing therapy with Maddison is a daily occurrence. Sometimes it’s structured, sometimes it through play. But we know that Maddison needs it, so we keep it up! The only way to build muscles is to work them! Continue reading “Maddison’s Exercise Routine”
A Day at the Hospital
12-hr hospital trip and answers
On November 13, 2018 we had 3 appointments out at BC Children’s Hospital for Maddison. We were doing the 2-hour drive in on a beautiful sunny day from Chilliwack to Vancouver, BC. There was a lot of anticipation for the appointments ahead, and apparently a lot of nerves as well. A Day at the Hospital. Continue reading “A Day at the Hospital”
We’re on YouTube!
Meet a Family of Ohs
On October 26, 2018, we took the plunge and launched our family’s YouTube channel! We’ve been sharing our life on our blog here, as well as our social media channels through Facebook and Instagram. But we’ve been wanting to be able to reach a larger audience – and hopefully impact more people – so we made our first YouTube video. Continue reading “We’re on YouTube!”
Camping trip 2018
Our greatest adventure yet: camping with our Tubie
There is no doubt that I was extremely wary about taking Maddison along for our first camping trip. You see, a toddler who is fed through a feeding tube, and camping, aren’t really two things that go hand-in-hand.
But we don’t want Maddison’s medical conditions to give us an illusion that she is limited when she actually isn’t. Continue reading “Camping trip 2018”
Family Beach Trip 2018
Taking our Tubie to the beach
When you think about going to the beach with children, you know it’s going to be a lot of work, but for the most part it’s pretty straight forward. You pack the basics; towels, umbrella, snacks, floaty, sunscreen… You give them a bucket and a shovel and they play for hours.
Life with Maddison isn’t straight forward though, and I was slightly intimidated taking Maddison on her first real beach experience. Medically complex children tend to make things a little more… complex. But I did my best to think everything through ahead of time. I knew that doing something like a beach trip on a whim just isn’t possible, so I had to make sure I did some serious planning before we left the house.
Continue reading “Family Beach Trip 2018”
Will we have any more children?
Will we stay as a family of four, or will we grow?
Asking a family what size of family they dream to have, or if they plan on having any more children is pretty common. Families come in all sorts of sizes, and it isn’t bizarre to have someone inquire if you would want to add more children in your family. But what about the Ohs family, do we see our family growing? Will we have more than two children? Continue reading “Will we have any more children?”
Insensitive Questions
“What’s wrong with the baby”
Some people don’t know the most respectful way to ask about Maddison ’s feeding tube. On our most recent trip to Kelowna we encountered that exact insensitive question, “what’s wrong”. But the man it was coming from was not asking it to be rude, he was genuinely curious, and quite nice. It may be that his generation doesn’t tip toe around the bluntness of questions they want to ask. Or maybe in his time things like disabilities weren’t as accepted or talked, so it would be viewed as something “wrong” with the child.
Continue reading “Insensitive Questions”
My Tiny Little Baby
Why won’t my baby grow?
When I held Maddison for the first time after her graceful entrance into our lives, I really didn’t know what our journey was going to be like. I also didn’t know that after 15 months since her birth I wouldn’t be chasing after a toddler – I would still be caring for her as if she was a tiny little baby.
Continue reading “My Tiny Little Baby”
Transitioning to J-Tube Feeding
I never thought I’d be happy about Maddison being hooked up to her pump 24/7
If you would have asked me a couple months ago my thoughts on switching Maddison from bolus g-tube feeding to continuous j-tube feeding my answer would have been, “no way Jose!”
Maddison hooked up to her feed pump all day long was something we certainly didn’t want. But her reflux was so bad. So was the pump really worse than catching spit up in my hands all day long…?