hypotonia

While changing my buddy's diaper the other day, I got to thinking about all the "side effects" of hypotonia.  Hypotonia, aka. low tone, is the ability of a muscle to respond to a stretch.  It has nothing to do with the strength of the muscle.  I looked it up and the best description for me was - low toned muscles do not fully contract before they again relax, they remain loose and very stretchy.  Our physical therapist said it's like my buddy has some extra gravity that he has to work hard against.  Kind of like the opposite of floating in water.

You may be asking yourself - why this thought during a diaper change.   Typical babies, you grab the ankles and push them towards their face and the bottom magically lifts.  Not my buddy.  You can put his ankles next to his ears and his bottom is still flat on the ground.  I have to physically lift his ankles up into the air... easier before he reached 26 pounds and knows how to squirm and roll.

My buddy wears cloth diapers - which I love.  But at night, you need to "double stuff" the diapers which adds a little to the bulk.  Usually not an issue unless you sleep on your stomach with one leg hitched up so your foot is next to your ear and your knee is pointing out, causing a gape and allowing lots of leaks.  We are in disposables at night.

As an infant he was so hard to hold.  It's not easy to pick up a limp noodle of a baby and even harder when they are soapy and wet.  It was so long before I could sit my buddy on a hip and hold him with just one hand.  And the low muscle tone also impedes speech development.

Yet with all that is stacked against him, here he is at 17 months old walking.  The past week he has perfected his skills and now walks 90% of the time in the house.  He even walked around a playdate and at the mall playground.  The "normal" range for walking goes up to 18 months.  We hit a milestone for typical kids!!!! I think I owe it to monkey bear.  She has walked up and down the hallway with him, encouraging him along the way, for countless hours.

1 : 1700

I am in the process of changing my doctor, so I had requested medical records from when my buddy was born.  While flipping through, I notice the lab results from my blood work testing for risks of chromosomal abnormalities.  My risk of having a baby with Trisomy 21 was 1 in 1,700.  

It takes me back to when I was pregnant with monkey bear and I had the same blood work done.  I came back with an increased risk for Trisomy 18 - which is basically deadly for the baby.  None live past the age of one.  So we went ahead with the amnio and endured the excruciating wait.  As it turned out, the baby was fine and we found out it was a girl.  A very good day indeed.

It's amazing the odds for my buddy to come into our life.  I had a 0.06% chance of having a baby with Down syndrome.  I am 5 times more likely to die from falling down.  I don't really believe in a greater being, but I do feel like my buddy was out there looking for us.  He knew we needed him, even if it took us a while to realize that ourselves.

magic

I can’t seem to shake the guilt I feel about the day my buddy was born.  It should have been a day of joy and unbridled happiness.  How could I have looked at him and felt such sadness and loss?  I’m not sure I can ever make that up to him.  I find myself giving him extra snuggle time and his cheeks are raw from all the kissing.   I need for him to know that I am overjoyed he joined our family.


I hate that I think of his birth and remember all the pain.  I wish someone could have made me see that it’s not a big deal.  Life hands out WAY bigger deals that Down syndrome.  With that extra chromosome, comes so much.  He will meet a kid for the first time and kiss them.  So maybe most kids don’t appreciate the open mouth slobberyness of it all, but it’s the thought that counts.


My buddy is one of the cutest kids I’ve ever seen, but for some reason I can’t capture it on film.  Every picture of him is lacking.  I read recently a mom referring to the extra chromosome as pure magic…  I agree.  There is a sparkle when you are around him that just doesn’t translate into pictures.


In the past, I’ve searched for something that made me unique.  I think being my buddy’s mom is exactly what I was searching for.   I can’t wait to watch him grow and see all that he can be.

shouting

My buddy is driving me up a wall.  Whenever he wants something, he screams at me.  He stands at the gate in the kitchen shouting, he hollers whenever a toy isn’t turned on, he bellows when food isn’t shoveled into his mouth fast enough.  I am so tired of being shouted at.  He has plenty of signs that he knows and uses, but to get my attention or, god forbid, I don’t move fast enough, out comes the screaming.

I am working on different ways to change this behavior, but so far no luck.  I’ll give him this much, the howling is effective.  It gets my attention every time.  I can only ignore it for so long before it pushes me over the edge.  I can be heard mumbling … “someday he will talk, someday he will talk”.

I love that my buddy knows what he wants and is trying to communicate his needs.  I really do appreciate each and every milestone - like when he wanted me to hold him instead of Papa.  I am confident that someday he will say “Mama” and I will tire of hearing that as well.  Hopefully, I’ll look back to these days and relish in hearing my name over and over again.