One year of hypotonia. Learning and loving through it all.

Every mother loves to hold and snuggle with their new baby.  What a treat when that baby is easy-going, loves to sleep and eats as expected.

We had our first sweet bundle of joy and none of the above applied.  She was colic-y (is that a word, if not, it is now!).  She didn’t sleep, eat and certainly wasn’t easy going.  If she wasn’t crying, she was fussing.  If she wasn’t fussing, she was whimpering.  You get the picture.  She was (and still is) our “tough” baby.  I wouldn’t have her any other way.  She’s almost three and loves to talk to us, tell us her opinion and make demands.  Typical almost-three year old.

When she was about 19 months, I had my son.  This was a night and day difference between her and my son.  His first night in the hospital and he slept almost eight hours!  Of course, when the nurse realized he slept so long, she immediately woke him up and we tried feeding. Sigh… so much for sleeping through the night!  With our other experience being quite the opposite, we were happy to have a little sleep!

We noticed early on though, he wasn’t feeding well.  He would constantly latch on and off, then on and off again.  He was struggling to suck and had a very noticeable tongue tie.  So, like our daughter, we had the tongue tie revised.  No improvement.  You could imagine our frustration and doubt.  We couldn’t figure out why he struggled so much.  He wanted to feed, he just couldn’t.  We went through IBCLC’s and even had a feeding consult.  He was not just struggling with me, he was struggling with bottles too.  We were lost and desperate.

At three months old, our pediatrician noticed it… hypotonia.  She was hesitant to diagnose this, since it is typically a condition of something else, not the cause.  She told us what to watch for, suggested therapy (physical and feeding) and gave us some resources.  We got him in to physical therapy, feeding was more of a challenge to work with.  He went to PT once a week and mainly worked on strengthening his core.  The therapist would give me things I could do to work with him at home.  Then the new year hit.  And the much higher bills of therapy hit.  We continued to go, knowing this was best, but at a much higher price.  Then the therapist that was working at this company (a contracted therapist) was not renewing her contract, thus we had no PT.  We were discouraged to say the least.

Fast forward to his 9 month appointment.  Doc comes in, evaluates him as usual and tells us he definitely has hypotonia.  She wants to continue on the PT route and start looking in to neurology.  Neurology!?  Seriously?!  I was overwhelmed with the “what ifs” and couldn’t believe my adorable, sweet-smiling, easy-going boy was going to need more evaluations.

We worked through the state run early intervention program to continue his physical therapy and feeding therapy.  This was extremely nice as it was free to us and the PT was in our house – no running to an appointment!20190424_181852

He made strides! At nine months he could sit up and eleven months he was crawling!  He wasn’t just doing his “inch worm” crawl (we called it this because he would push up on his hands and knees, then lunge forward, flopping his chest on the ground and doing it all over again).

We worked on getting him in to neurology asap.  His pediatrician wanted to run the standard one year tests, but also a chromosomal micro array work-up.  This was something she knew neurology would want anyway, and since he had to get blood work done, why not?!  I thought it logical, as did she.  Apparently our insurance did not!  With any chromosomal test, it has to be approved prior to the appointment.  I didn’t know this!  I had my first crash course in learning the insurance company nuances… it wouldn’t be my last.  They declined the test, saying there’s no medical need at this time.  What?!  Did they have a doctor magically evaluate my son to determine need?  I explained to our case worker that we were going to neurology in a month and knew they would also be requesting this test.  We were trying to avoid the delay and provide neurology with a better picture of my son’s health so they can make a more informed decision on what to do next.  She seemed genuinely sorry (my hands are tied kind of thing) and gave us some suggestions.

After talking with the pediatrician, we decided to just wait until the neurology appointment.

Here we are, on the precipice of knowing, but not knowing all at once.  As a fairly logical minded person, this is a struggle for me.  I struggle wanting to know what’s specifically wrong, so we know how to best treat it.  I also know that we may never know what is the cause of his hypotonia and will only be able to do our best to treat this.  Leg braces, 20190604_171527which I have learned are called SMO or AFO, are a high probability. Back and hip braces as well.  More fights with insurance about their rules and procedures are expected for all of this.

In the mean-time, I have an adorable little boy.  A boy who knows nothing different than what he currently has.  He does his best with what he’s been given and always with a smile on his face.  He’s our easy-going, loving kid.  He loves to be held and snuggled.  He loves to laugh.  And seeing this in him, seeing all his love of these simple things, helps me stay joyful through it all.

2 thoughts on “One year of hypotonia. Learning and loving through it all.

  1. Pingback: AzEIP – Advocating for your child! (for families who live in Arizona & my personal story) | mommasbusylife

  2. Pingback: To breastfeed or not to breastfeed? That is a question? | mommasbusylife

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