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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Speech Therapy

Tips and Tricks from Speech Therapy

“The greatest decision I made”

Enrolling our son Jackson in our local speech therapy program was the greatest decision I made in getting him to speak. Over the first couple months of enrollment we had multiple one-on-one sessions with Jackson’s speech and language pathologist (SLP) in our home. In those sessions she was able to evaluate Jackson’s speech (or lack there of) and give me (the mom) the right tools to teach Jackson to speak myself. We then went on to do speech therapy in a classroom setting for a couple more months.
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Speech Therapy

Teaching Jackson to Speak

What we did wrong and what we learned about teaching our son to speak

“He’ll get it eventually”,  If I had a nickel for every time I heard that phrase, I’d be rich. But all joking aside, by the time Jackson was 18 months old, he only had two words: “Mama” and “Dada”. By two years of age Jackson was showing he could understand a great deal, but his vocabulary hadn’t grown. He just wasn’t getting it and I was getting frustrated!

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Mom Life

Toy Tidy

How to start a Toy Tidy rotation, and why it works

I am the kind of person who doesn’t just like organization – I thrive off of it. I love the satisfaction I feel when the job is complete. It makes me so happy to have everything organized in boxes and bins – I must take after my mother! (Thanks Mom!)

I like everything to have a home in my home. I find that with better organization comes more fluidity through my day, and thus less stress. Win/Win!

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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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