Counting on grandma --Rosa and Stephanie’s story

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Born with a rare brain disorder, my granddaughter Stephanie is confined to a bed and cannot use her limbs. Her meals come by way of a feeding tube—from me.

I care for her day in and day out—because I’m her grandmother—and that’s what I do. Since she was an infant, I’ve been at her side giving care—and giving love. Now she’s 19 years old.

Stephanie recognizes familiar sounds and knows grandma’s voice. But since she’s non-verbal, I can’t ask her questions.

Still, I get plenty of feedback from her. We have our own way of communicating. It’s pretty special. I know she’s happy when she coos—she reminds me of a gratified baby.

When I hear her chuckle, it makes me feel good. It tells me she feels good.

Stephanie loves music, especially children’s songs. And she likes the cartoon, SpongeBob SquarePants.

Something interesting about Stephanie—she senses my emotions. If I’m stressed, she knows. I’ve noticed how her body language changes. Her eyes tell the story or her little lips droop and she gets real still.

When someone relies on you 24/7, it takes unwavering dedication. Keeping Stephanie healthy and engaged is my purpose. Sure it’s hard work at age 64—but it keeps me active and healthy.

Because of her swallowing difficulty, I’m like a hawk watching over her and making sure fluids don’t accidentally drain into her throat—which could be fatal if it travels into the lungs.

You can imagine the challenge of rinsing her mouth after we brush teeth.

A while back, Stephanie was in the hospital. That’s when I noticed an interesting tooth brush connected to her suction machine. I was impressed because it prevented water from draining into her throat.

This suction-type toothbrush is designed for people who cannot spit (or expectorate) or for anyone with difficulty swallowing.

Eventually, I found out what the nurses were using—a Sage brand known as a Toothette® Single Use Suction Toothbrush System with Perox-A-Mint® Solution.

I figured it would be a great product at home. And I was right. It helps reduce fluids from accidentally draining into Stephanie’s throat when we brush her teeth.

Something else—it’s easy to use. I just hook the toothbrush up to her suction machine—and now rinsing is a breeze—the suction takes care of it.

Having the Toothette Single Use Suction Toothbrush is a necessity. I’m really pleased with it and so glad we found it. 

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