When we found out LB had Down syndrome, I admittedly had little to no knowledge of this word. I knew that low muscle tone could be an issue but didn't know the word for it. Even as immersed as I tried to become in all things Ds.

So when she was born, I thought the "low tone" they were talking about was how she cried. LOL! I crack up at that thought now. But she didn't cry! She had a yell, almost. It was adorable and yet distinct.

Now that word has become such a large part of our lives that I can't ignore it or laugh it off anymore. Nor did I have any idea the impact it would have on LB's development and life.

When you really think about it, there are so many muscles that you use and you never even think about it.

Since LB has been born, she has the cute little tongue protrusion. Many people commented on it saying she likes her tongue to hang out. But what they don't realize is that it wasn't a willful gesture. It's the lovely Hypotonia.

We see it in all aspects of her life. Mostly, feeding and speech. LB is 3 and has a some handfuls of words that she is able to articulate. Many aren't easy for others to understand yet. I guess this isn't as apparent until you have a younger sibling that is like a little parrot that repeats every word you say.

She's getting much better though and mostly post surgery. I am quite sure her tonsils and adenoids had a great deal to do with her delayed speech in addition to her hearing and need for tubes.

But the hypotonia also has given her a weaker tongue and muscles in her cheeks. If I had one word of advice for any new mom, it would be to learn the exercises and do them religiously! It will make such a difference. I can without doubt say that we NEVER had this taught to us when she was a baby. We didn't even get speech approval until she was much older. This has to start from the early days. Like day 1 or 2! It's CRUCIAL to so many other elements to development.

As a new mom, I didn't know. I wasn't informed. When they ask me how she was eating, I would answer, fine. But now, she is 3 and still can't drink from a straw. She took a bottle and even nursed well. But the concept of a straw or hard sippy cup doesn't work. Let's not even touch on the chewing aspect. That's another nightmare. She is a masher.

Then you have the gross an fine motor that hypotonia affects. This list could get long with all the things it causes, etc. But the one thing Hypotonia does give us, is one HECK of a snuggler!!

Hugs from Bug are just like butta! She melts to you and its the best thing in the world.

Until next time..


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