By Kim @ Up North Mommy | Leave A Comment
My daughter, whom, I lovingly call Little Miss Throwsafit, is my sweet, precious, beautiful three year old daughter. She lights up any room and brings a smile to the face of everyone she meets. She also has hypotonia and speech apraxia. This is how I learned about her hypotonia.
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“She has hypotonia.”
That’s what the pediatrician, Dr. Clay-Hufford, said to me at my daughter’s nine-month well visit. I asked the doctor to examine my daughter closely because I was concerned that she still wasn’t sitting up at nine months old. When I put her on her bottom, she immediately fell forward onto her face.
Hypotonia, also known as Floppy Baby Syndrome, is a neurological disorder that causes the muscles to be low in tone, making them feel soft and doughy. The easiest way to explain it is that my daughter’s muscles struggle to support her body weight.
After the doctor made her hypotonia diagnosis, she immediately referred
me to a pediatric neurologist who then ordered a battery of procedures
and tests to try and find the underlying cause. So far, after a CT
Scan, an MRI, CPK, a variety of blood tests, urine tests, amino acid
tests, chromosomal and metabolic tests, and a muscle biopsy, everything has come back normal. This is good on the one hand, but frustrating on the other.
Thanks to physical therapy, my daughter finally did learn to sit up when she was 13 months old, the age when most kids learn to walk. She
began crawling when she was 2 1/2 years old. In early June, when she had just turned three, she took her first steps in her walker. That was a significant day for us.
Every day Little Miss Throwsafit gets stronger. Yet, my husband and I are very much aware that it’s going to be a long road ahead for her and that it will be take a lot of time and physical therapy before she walks without any assistance. We also expect that it will probably be years before she runs, skips, and jumps. But one thing we know for certain is that she’s got the pluck to make it happen.
Kim blogs about life in the woods of Northern Michigan at Up North Mommy.
ABOUT Kim @ Up North Mommy
I am a wife to Steve and a mom to three wonderfully crazy kids: Little Man who is six, Little Miss T{read more}
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Wow. How long have I been reading you and I didn’t catch on to this? It sounds like you’re handling it very well, and she looks like a very happy little girl in spite of her challenges. Thanks for sharing your story.
A very good friend of mine’s daughter was also diagnosed with hypotonia. She’s in grade school now, and doing wonderfully. I’ll send her over!
great honest, hope-filled post…and beautiful daughter! her smile is infectious.
What a cutie. She is blessed to have two parents who care very much.
Kim,
I enjoyed hearing more about Little Miss Throwsafit! Although I’m familiar with hypotonia Peanut does not have it to the degree your daughter does. How exciting that she is walking now. She is so pretty and that smile is infectious. Thanks for sharing!
Our daughter was recently diagnosed with hypotonia and speech apraxia. Your girl is adorable. It is nice to see parents that appreciate every moment and accomplishment. I know we do.
Sarah,
Thanks so much for commenting. I know how overwhelming it can be at first trying to adjust to your daughter’s new “development schedule,” I suppose you could call it.
There’s so little information on hypotonia on the internet, but there are two really good message boards you may want to visit just for the realization that there are so many other kids out there like ours.
The first is Hypotonia Hope and the other is Hypotonia and it’s through iVillage.
For speech apraxia, the site Apraxia Kids is a good one and has a message board too.
I hope all this helps.
Thanks, everyone, for your comments. I appreciate the words of encouragement more than you know.
You have such a positive attitude! Thank you for sharing your story.
I am enjoying your blog, too.
Hello there, one of our 10 mo old twins was recently “diagnosed” with hypotonia. We are in the process of looking for a real cause, and have an appt. with the ped. neurologist next month. I’d love to converse with you about this as we go through the journey. I’m checking out the message boards too.
My email and details are above.
Thanks!
Dear Kim. Thank you so much for your post. I too learned that my son had hypotonia at his nine-month visit. I will never forget the look on the pediatrician’s face when she tried to sit my son up and he fell over like a house of cards.
That was eight months ago and he has been in PT since that day. At 17 months, my son is not on the road to walking before 18 months. Soon, he will begin EI and be evaluated by a neurologist. I am just starting to learn the long road that is hypotonia. I have endured the stares from other parents and the thoughtless comments from family. And, I find it a blessing. It has taught us so much about the character of people and the quality of our relationships. And, our son is a joy, on no one’s time table but his own. He is also Mr. “throwafit”, so thank you for mentioning that. I think the fear associated with physical limitations makes that reaction understandable.
God bless….
HI,
my daughter is 14 mos. now and she can’t sit straight yet. she is also has hypotonia.
we did the blood test and it was normal and now the neurologist ordered a MRI on the brain and c-spine. when your daughter had the MRI, did she have to be sedated? and at what age she did the MRI? I am worry about the sedation.
thank you for sharing any information you may have.