Tube Feeding

Top 10 Items Every Tube Fed Child Needs

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”

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Tube Feeding

Talking to parents of tube fed children

How to talk to a parent whose child has a disability, without offending them

I recently did a quick survey through my Instagram stories, super scientific, I know. In my stories I asked parents who had children who used feeding tubes to share with me what they hated people to say when asking about their child’s feeding tube, and what they would prefer people to say to them instead. I received so many messages from my followers weighing in on the subject.

Although most of the responses were similar to how I would prefer people to interact with me about my own daughter’s feeding tube, some of the messages surprised me.

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Maddison Ohs, Special-Needs Parenting, Tube Feeding

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…?

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Maddison Ohs, Tube Feeding

Hospital Stay 2017

Photo credit: Rachael A Photography | www.rachaela.com

Failure to thrive

Maddison’s feeding continued to deteriorate after her spica cast came off. I had tried everything I could to help her, but Maddison continued to spit up anywhere from 75-100 times per day. I kept hoping things would start to improve, but they weren’t. She was starving, and we were beginning to get desperate! Read the Spica Story Part 1 and Spica Story Part 2.
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