Hypotonia, Parenting

World Prematurity Day 2016

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Today is World Prematurity Day and, as I’ve done on various social media outlets for the last two years, I’ve shared pictures of L and a little bit of his story. It doesn’t look like I did that here last year, so lets take a walk down memory lane, shall we?

L was born a few days shy of 37 weeks. He is what is called a late-term premature baby. My biggest concern upon finding out I was in labor was NICU time, but thankfully he didn’t need it.

World Prematurity Day 2016

Although L didn’t need NICU time, we’ve faced challenges. Many of them are the same things even younger preemies face. These challenges have been breathing/respiratory issues when he catches a cold and developmental delays. Hypotonia (low muscle tone) is also found in premature babies.

World Prematurity Day 2016

I still go back and forth on whether L’s hyptonia is from his early birth or if it’s genetics, or both. It can be caused by birth trauma, which is plausible because I was walking around with broken waters for two days. It can also stem from a genetic disorder. It can affect everything from respiratory to development milestones to speech. I’m hoping to get some answers next month when we see the geneticist.

World Prematurity Day 2016

L has always been a little bit behind, but still within normal range of when doctors want to see kids reach milestones. We’ve been working with Early Intervention since he was 16 months old, when I called because he still wasn’t walking at his 15 month check up. While the pediatrician wanted me to wait a few more weeks because she was certain L would take off running any day (something many, MANY people had been telling me for months), my gut told me something wasn’t right. He was officially diagnosed with hypotonia at our consultation with Early Intervention just shy of him turning 16 months.

If L has taught me anything, it’s been that I need to trust my gut more often. Mothers instinct is real, and it’s powerful. So often we’re told to cast it aside, and when we don’t we’re looked at as a little bit crazy and irrational. But it keeps me driven, and I’ve been proven right more than I’ve been proven wrong.

World Prematurity Day 2016

L has improved so much this year: Eating and chewing…His confidence in climbing at the playground and even using the stairs…And especially his speech. I think school has helped with that immensely.

We still have challenges to overcome, but this year has given me hope that they will improve, and even fade, as long as we continue our hard work. He seriously amazes me every single day.

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