Couch time makes my heart smile

My precious angel girl. She’s so perfect to me in every way. Though I know she’s hardly perfect, she just lights up my face with her personality. She’s feisty, independent yet also very empathetic and thoughtful.20190118_152408

One thing she is not is an early riser. Can I get an Amen?! This was absolutely wonderful for my night-owl husband and me. She would go to bed around 7 pm, and be in bed until at least 7 am. Yes! Twelve plus solid hours of sleeping.  No middle of the night wake-ups, no early morning “are you up yet”, our lives were golden.

Then we got the sledgehammer with my son. He thinks, “The sun might start coming up, so I’m just going to get up now.  Don’t want to waste that daylight!” He’s usually up by 5:30 am.

Our morning routine usually looks like this (note, I am NOT a morning person, so this is just how I interpret the morning while wishing I was still asleep):

  • Get the hell-creature of early morning perkiness up and feed him before he wails his banshee cry of hunger.
  • Oops! Didn’t change that pee-faucet catcher early enough, so now it’s leaked on his freshly worn onesie. Guess he’s going topless.
  • *hears the start of the banshee wail* Oh yeah, chair, food! *makes coffee*
  • Shovels 10 tons of food in to this miniature daddy creature (I don’t know where he packs it all). *takes a sip of coffee – still too hot*
  • The creature is now starting to resemble a baby boy, though he’s not too cute yet.
  • He gets a wipe-down, and is now free to roam.
  • OH CRAP! Forgot to close the baby gate to the kitchen, this baby has now knocked over the dog’s water and is trying to eat the dog food. Eww!
  • Get the dog food out of baby’s mouth. Clean the baby, clean the floor. Change the diaper – yeah! that’s what it’s called – again.
  • He now smiles his wide mouth, ear-to-ear smile.  He’s starting to look like my cute baby boy now! I smile back.
  • Allow him to roam again, this time with the kitchen gated off.
  • Go to the kitchen and make my breakfast – oh no! where did I sit that coffee down?!
  • *gets coffee and takes sip – too cold* I dump the cold coffee and start over.
  • *takes sip of new coffee – too hot, but still chug it* I shovel my breakfast as my sweet-sweet boy stands up and tries to grab it from me. I literally have to eat with my plate above my head or in another room.
  • Thank the heavens! He’s almost ready for his morning nap. Oh crap – forgot about that toddler of mine.
  • I look on the viewer, and sure enough, she’s awake, just laying on her bed.
  • Get toddler up, change her diaper ASAP and get her breakfast ready.
  • Now it’s definitely time for baby to go down for morning nap (about 8:30 am).
  • Toddler pushes her food around, maybe takes 2 bites and insists she’s done.  She then sits in her chair another 30 mins, because I am busy getting baby ready for bed (and let’s just face it, she needs to eat more than 2 bites!).
  • Baby goes down! He’s out for at least 2 hours.
  • Go back down stairs and force feed my toddler. I bargain with this child, because her will is much stronger than mine this early in the morning.
  • She’s finally “finished”!
  • I set her free to roam and she heads straight to the couch. Gets a pillow and blanket and asks to watch something on the TV.

I give this all to you to get to this point in my day. This is my joy moment. I love when she just wants to lay on the couch, many times lay on me as well, and “wake up”. We usually watch some show on our Roku, or a movie, but it’s our time. It’s just her and me sitting together, cuddling, talking, and eventually playing.

It’s almost as if she knows I need a break. Our little guy, I love him so much, is such an early riser. He’s so energetic when he wakes, and I just can’t keep up in the morning. It’s as though she feels this and knows – or so I’d like to think that.

I really believe she’s just like her daddy. They take a while to really get revving in the morning. Usually, they like to lay in bed for a good 30 minutes. Then they’ll have a small breakfast and just do something relaxing for another 30 minutes.20190613_083807

I know these moments won’t last forever, though there is a part of me that wishes they would. I know it’s fleeting, and I soak it up. There will be a day she will hide in her room, listening to her music with ear buds and not want to be around us any more than humanly possible. So I hold on to this time. This is our calm time, our quiet time, our cuddle time. It’s my joy time!

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.