Living with Hypotonia

One of the ways that Precious’ disability presents itself is through her low muscle tone, also known as hypotonia.

When Precious was first born, her hypotonia showed itself through her general floppiness, and in the way she laid on her back with legs and arms akimbo, like a frog. She was really hard to pick up; almost like a rag doll. The hospital wouldn’t allow her to be fed by mouth, so she had nasogastric tube and was fed by a pump. We were trained on inserting the tube and on using the pump so we could take her home from the hospital. As she got older, sitting, standing and walking were challenging due to her low tone. She also snored loudly enough to rattle the windows.

Precious’ uvula (the dangly thing in the back on the throat that is always in cartoon drawings) was hanging down, loosely; also a victim of low tone. This caused Precious’ snoring and for her to have a raspy sound like she needed to clear her throat for the first 4 years of her life. We would ask her to cough to clear the sound. When she was about 4, she finally had an adenoidectomy, which eliminated the snoring and allowed better air flow. The Ear, Nose, Throat doctor said that Precious likely couldn’t breathe through her nose until after the surgery with caused mouth breathing.

One of the other issues from the low tone, which seems concentrated in her trunk and the middle of her body generally, is that she has trouble keeping her mouth closed. This causes her to drool, and I know it’s not good for her teeth to be breathing through her mouth. Since she also has a high palette (roof of mouth), her teeth are really crowded, and despite flossing and brushing by an adult every day, she has had more than her share of cavities. The pediatric orthodentist started drooling herself (with greed) when she saw Precious teeth and guaranteed us “you’ll be back!”.

So the habit of mouth breathing, and the lack of muscle tone have created a child with an open mouth.

The infant development specialist recommended putting jam on her lips, or getting her to lick things off of a plate. The speech pathologist recommended using a visual cue, like touching our chin, to remind Precious to close her mouth.

Open Mouth

Closed Mouth

Fake Smile

When I’m taking pictures of Precious, I try to remind her to close her mouth, but her closed-mouth posture is so tight and unnatural, and her forced smile seems so fake. I’m all for natural photos of people, without asking them to smile. What do you think? Should we embrace that Precious has an open mouth and not worry about such a trivial thing, despite the dental bills? Are there any exercises that we should try?

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