Redefining MommyhoodJourney of a mom whose son is overcoming hypotonia

I’m sure most people in the US would never ask that question, but it’s a different story if you live in Florida and you are not originally from here.

Luke and I have been going for walks in the morning to a nearby park, but it’s unbearably hot by 9am. I’m drenched in sweat by the time we get back. Luckily for Luke, he gets to sit back in his jogger stroller and stay out of the sun. He still gets a little sticky though. I’m sure I’m burning lots of calories!!

Florida has horrible heat and humidity, but at least we have pretty birds too:)

For those who have no idea what I’m blabbing on about:

Alternative Names

Decreased muscle tone; Floppy infant

Definition

Hypotonia is decreased muscle tone.

Considerations

Hypotonia is often a sign of a worrisome problem. It may be a sign of a central nervous system problem, genetic disorder, or muscle disorder.

It can affect children or adults.

Infants with hypotonia seem floppy and feel like a “rag doll” does when held. They rest with their elbows and knees loosely extended, while infants with normal tone tend to have flexed elbows and knees. Head control may be poor or absent, with the head falling to the side, backward, or forward.

Infants with normal tone can be lifted with the parent’s hands placed under the armpits, while hypotonic infants tend to slip between the hands as the infant’s arms rise unresistingly upward.

Source: http://www.nlm.nih.gov/medlineplus/ency/article/003298.htm

Every mom I know has read the What to Expect books, including myself. The pregnancy one was ok, although it did make me paranoid and worry about every little thing going wrong. The first year and toddler versions did nothing but make me worry, get angry & sad, and think I’m a horrible mother, or that my child is not “normal”. There is that dreaded word again! Any parent of a special needs child or a child with hypotonia should seriously burn these books!

I stopped reading the toddler version when my son was about 15 months old. That is around the time his pediatrician referred us to the neurologist and we self-referred to Early Intervention. Some of the behavioral issues still apply, but it’s not worth it for me to skim the book to find what I need because my eyes always drift to the “your child should be able to..” sections, then I’m upset all over again.

Maybe I should write a book for parents with kids with hypotonia??

Before having a baby, I was very independent and self-sufficient. I was in the military for 4 years, then worked full-time for many years in telecommunications as an engineer. I also went back to school full-time to finish my Bachelors while I was working.

We moved to our current city about 3 years ago, where I wasn’t able to find a full-time position. I worked part-time doing marketing and advertising up until I had my son.

I am now my own worst enemy. Yep, you guessed it, a stay-at-home mom!! In our previous neighborhood, I was in the minority. I worked full-time and had no kids. Every other woman in the neighborhood was married w/ kids and a lot of them were SAHMs. I remember thinking “ugh, must be nice to stay at home all day.” Obviously I hated my job and I was bitter. I am getting paid back for those thoughts now.

Being a stay-at-home mom is the toughest job I’ve ever had, but it is also the most rewarding.

One thing no one really tells you about before becoming a mom is all of the advice and opinions you hear once you have your precious bundle of joy.

Sometimes people actually offer constructive criticism, I mean advice. Other times, it makes me wonder if they are really just trying to push my buttons and be intentionally mean or judgmental.

With our situation, I’ve heard almost more than I can stand to hear. I’ve heard such ridiculous things like “oh, he doesn’t walk because you hold him too much and you don’t make him do anything.” Another great one: “all you do is hold him and nurse him.” Um, hello?!?! He’s a baby, that’s what they do.

For awhile, I would second-guess myself. After all, these opinions came from seasoned parents, so they should know right?? NO!!! Every mother and child is different and I’ve learned over time to trust my instincts and know that I’m the best mommy I can be (on most days anyway). I do still place some blame on myself though for not picking up on the cues sooner or getting him into therapy earlier. There is nothing I can do about that now. We have to live in moment and know that things will be ok.

Ok, here is one of the not-so-fun parts of mommyhood. Constipation and blowouts! Luke is chronically constipated because of the hypotonia. His hypotonia is mainly in his trunk and legs so constipation is a side effect.
He has been to a gastroenterologist and is on Miralax daily to try and combat the problem, but dosing is always a guessing game. He still gets constipated, so we up the dosage, then two days later……boom!!! A huge blowout!
The doctor seemed to think that he may also be withholding since his early bouts of constipation (pre-Miralax) were so traumatic.
I’m so excited to start potty training. Can you sense my sarcasm?

One of the main reasons I wanted to start this blog is to share my experience with my son’s hypotonia, also known as low muscle tone.

He is a normal boy in every way except that he is 20 months old and is not yet walking. He can stand along tables etc when he wants to get at something. He just starting getting into a sitting position on his own in June (from laying down), and he just started to crawl about 2 weeks ago. His primary form of transportation since December has been “butt scooting.”

Luke has been in physical therapy through early intervention since May of this year. He has progressed quite well. His therapist is happy that he met her 6 month goals in only 3 months!

He has also been through various tests to rule out causes for the hypotonia. He has had an MRI done of the brain and lower spine, both were normal. He also had extensive bloodwork done to rule out metabolic disorders and genetic conditions. The only thing that showed up was a vitamin B12 deficiency, which may or may not cause hypotonia. He is taking a B12 supplement just in case. A trip to the orthopedic surgeon also ruled out anything wrong w/ his legs or hips. They did a hip xray to be certain.

I guess our only “diagnosis” from a doctor is hypotonia which really isn’t a diagnosis at all. My diagnosis is a subborn boy who will do things in his own time, no matter how frustrating it is for all involved:)

Phew!!! Ok, now that I’ve filled everyone one in on Luke’s medical background, it’s time to move on. He is still a normal (whatever that really means) toddler with the same issues etc. as others.

My name is Tilly and this is my first attempt at blogging. I am a 33 year old stay at home mom (SAHM) to a wonderful 20 month old son named Luke.

Luke is a normal toddler in almost every way. He is not walking yet, which makes him different from most toddlers his age.  He has gross motor delays and a condition called hypotonia.

This blog is to share the story of our journey together. I hope to make more people aware of hypotonia and to hopefully offer some support to others in our situation.

I will also be blogging about other mommyhood issues that any mom can relate to.