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Hypotonia - Joey's Story

Our relationship with Hypotonia started as soon as Joey was born. He was diagnosed with mild hypotonia during his admission to the neonatal ICU at 4 days old. From then on, with every admission to the hospital, it was noted that he had hypotonia- but to what degree was varied by medical opinion. Either way- we knew something was off.

This was the third child that we have raised together and the other two weren’t “floppy”.

But, there were other more concerning things happening at the time- like seizures,

so his low muscle tone took a backseat on the problem list.

As he got older the hypotonia became much more obvious. Milestones, unfortunately, were not even close to being met. Joey’s big sister took it upon herself to lead  tummy time classes with him a few times a week. It was so much fun to watch.

He actually did okay in the beginning, but as his seizures and disease progressed, he was unable to even hold his head up. There were only a handful of times that he did hold his head up just briefly. Of course as you can see, we were beyond proud of him, for whatever he could achieve.

We did biweekly Physical Therapy with Joey. He had great potential as stated by his Therapist. He would make progress, only to be undone by seizures and medication side effects.

Frustrating, heartbreaking, and unfair.

Any special needs parent will tell you- not what their child can’t do, but what their child CAN do. Joey breastfed like a champ- better than his typical brother ever did. He also took well to bottles. Feeding was his comfort. In the end the hypotonia was so severe that he was fed with a feeding tube. He could no longer latch to a bottle properly, so he would aspirate the formula into his lungs, coughing and choking. This is a common problem that many severely hypotonic children face.

I will have to add a precautionary ‘do not try this at home tale’- but we did let him lick an orange gummy bear once. It’s one of our fondest memories.

We knew that he was succumbing to his disease, so we gave him every comfort and joy that we could provide. He left us at 7 months old, and despite the obstacles bestowed upon him, he outshone his struggles with a great love that could be felt by just holding our sweet, perfect, floppy baby boy.

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