Wednesday, November 23, 2011

Hypotonia - My Daughter's Story

Every mom wishes for happy, healthy, normal children so what do you do when you find out one of you're children isn't so 'normal' ??  My daughter was born on June 20th, 5 days late, 8 lbs and a perfect apgar score.  This was after a fairly easy pregnancy and a quick delivery.  I guess the first signs that something was wrong, though I didn't know at the time, was she couldn't breastfeed effectively.  She could suck forever and not get enough.  It took us 18 days to figure out she wasn't getting enough so I pumped and she got the bottle.  It took her a few weeks to be good at taking the bottle.  At the time I didn't think too much about the sucking issues.

I think when you're a mom you just know when something isn't right.  When my daughter reached 3.5 months old I was getting a little concerned as to why she wasn't lifting her head up when on her tummy, why her head was still wobbly, why she had head lag and when picking her up under the arms it felt like she'd slide right through.  At her 4 month check-up I expressed my concerns to the doctor and she felt that it was because my daughter is long and didn't weigh much for her length so it was causing muscle weakness but she referred us to a specialist for further evaluation.  Even though she was being positive about it I just knew it was more that just muscle weakness.

At 5 months old we got an official diagnosis of mild Hypotonia which upon reading about it doesn't really mean much.  Hypotonia is usually a symptom of something bigger having to do with the central nervous system or muscles and it's linked to many, many disorders.  If they can find the underlying disorder than that's treated accordingly but often with Hypotonia it seems that they can't find a cause so it's treated with appropriate therapy as needed.  We are in the process right now of beginning the testing to see what can be causing it starting with an ultrasound of my daughter's head.  Apparantly a lot can be seen through the fontanelle or 'soft spot'.

As you  can see in the picture she is lifting her head up now at 5 months very well and she's also started to stand when we put her feet on a flat surface!  She still has head lag, is a little wobbly and doesn't sit well even with support.  She's reaching milestones in a timely manner so far but only time will tell how the Hypotonia will affect her.  She doesn't babble much but that's not a concern yet.

I'm still trying to let this all sink in and educate myself as much as possible in order to help her.  I find writing about all this helpful for myself and hopefully others who might be going through something similar.  It's also a great way for me to keep my friends and fans updated.  I'll keep updating as our journey unfolds.  Thanks for listening!


  1. I did some reading myself when I heard about the little one. Keep us updated when you start getting the test results back.

  2. Thank you for sharing the beginning of your story. I am a new follower and also work with adults with developmental disabilities. My heart goes out to you, and so do my prayers.

  3. Hello... My daughter is coming up on 3 months and has hypotonia... I was wondering if you have any current blog entries about your daughter and her therapies etc. I can be found at