Blog

Maddison Ohs, Special-Needs Parenting

Family Beach Trip 2018

Kelsey Ohs

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.
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Maddison Ohs

Update: IMAGINE Research Study

Kelsey Ohs

10 Months later

Maddison Ohs has proven to be quite the mystery ever since she was born. And it appears she is holding on to that reputation. Even when we left the NICU, we went home without clear answers as to what was causing Maddison’s symptoms, or even the condition itself. It has been an ongoing investigation trying to understand Maddison. Continue reading “Update: IMAGINE Research Study” →

Mom Life, Special-Needs Parenting

Will we have any more children?

Kelsey Ohs

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?” →

Mom Life, Tube Feeding

Family Photos 2018

Kelsey Ohs

Not hiding the feeding tube

For Maddison’s first birthday my wonderful friends gifted our family with a one-hour photo session with Rebecca Bennett Photography. I knew from the very beginning that we would not be hiding Maddison’s feeding tube. Maddison’s feeding tube is an extension of her body, and as much as Maddison is accepted, so is her feeding tube. Continue reading “Family Photos 2018” →

Tube Feeding

How To: Cleaning Feeding Tube Extensions

Kelsey Ohs

The safe and effective way

Feeding tubes that are used for continuous feeds can get super gross with one day of use. When we switched Maddison to j-tube  feeding (into the jejunum, or small intestine) we noticed that her feeding tube extension would get a ton of formula build up. I’ve found a safe and very effective way for cleaning feeding tube extensions using household items. Continue reading “How To: Cleaning Feeding Tube Extensions” →

Mom Life, Special-Needs Parenting

Insensitive Questions

Kelsey Ohs

“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.
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Tube Feeding

How To: Organize Tube Feeding Supplies

Kelsey Ohs

Making tube-feeding a little easier

There are a lot of supplies involved when your child is tube fed. Your home may be over run with all the syringes, tubes, and don’t forget the boxes and bags that the tube feeding supplies come in. And it’s not just feeding tubes, it can include other medical equipment (trach, suction machine, pulse oximeter, etc.), whatever you may get from your medical supply company. But if you have a organize system in place for when your order come in, it will make things flow a lot smoother. Continue reading “How To: Organize Tube Feeding Supplies” →

Tube Feeding

Why we formula feed Maddison… for now

Kelsey Ohs

And why using formula doesn’t bother me

I have a strong belief that fed is always better than not. But I also believe that nutrition that comes directly from nature is preferred. I have been very blessed that my body produced milk for both of my children, but Maddison has almost always needed to be supplemented with formula feeding, and I’ve never been bothered by it.

Continue reading “Why we formula feed Maddison… for now” →

Tube Feeding

“How long will she have the feeding tube for?”

Kelsey Ohs

This is by far the most frequent, and hardest question to answer

People ask us all the time, “How long will Maddison need her feeding tube?” And I’m sure if you ask any other parent of a tube-fed baby they will say that it is the most common question they get asked too, along with “Why do they have it?” It really is the hardest question to answer, because there isn’t a straight forward answer. Continue reading ““How long will she have the feeding tube for?”” →

Tube Feeding

Top 10 Items Every Tube Fed Child Needs

Kelsey Ohs

My favourite 10 items for raising a tube fed child

There are so many things involved when your child is tube fed (as if raising children wasn’t hard enough). There are syringes, feed bags, pumps to operate, rates to calculate, dosages to draw up, and of course a lot of mess. It is a lot of hard work, and you can pretty much earn your degree in medicine from the amount of hours you will put in to feeding your child.  Continue reading “Top 10 Items Every Tube Fed Child Needs” →