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.

frustration

Drinking out of a straw.  The proverbial straw that broke the camel’s back.  I guess that makes me the camel.  There is no good way to teach someone how to use a straw when they really don’t want to learn how.  As soon as my buddy sees that straw coming, he throws his head back and yells at me.  He has no words, but sure does get the point across.

The fact that he can only drink out of a bottle doesn’t bother me too much.  I am more concerned about the future.  I want him to be able to speak as clearly as possible in order to make his adulthood easier.  There is a school of thought where the stronger his lip/tongue muscles are, the better his speech will be.  Sucking on a bottle does nothing to help the situation.

I am a patient person.  But I feel like we are getting nowhere.  There are no mini victories along the way.  Just frustration.

first steps

My buddy took his first step!!!!!!  Granted, it was entirely accidental and he hasn’t done it since, but I saw it with my own eyes.  Of course, he was walking to me.  The only other person around was monkey bear.  She worked up a bit of enthusiasm, but not the response I was looking for.

My buddy has been standing unassisted over and over again.  He will stand up, hold it for a few seconds, plop down, and look around for applause.  Monkey bear is a pro at this.  She calls me out from the kitchen every time he stands up.  I can sit and just watch him.  I never thought that at 15 months he would be standing on his own - with walking only a step away.

It’s funny.  I hoped for walking by 2 years old.  I am fully confident that milestone will be reached before my secret goal.  I never had a thought about being able to drink from cups.  And here we are … only able to use a bottle and only if leaning back.   As they say, the highs are higher but the lows are lower.  The therapeutic straw cup just came in the mail today, so off we go to reach another goal - even if we didn’t know it was there.

But man, how that boy loves to move.  He can commando crawl faster than I can walk.  He has mastered crawling up the stairs.  He can pop up into sitting in the blink of an eye.  He’s up on his feet pulling things off a table top before you even notice.  Perhaps we have an athlete on our hands.

go forth and multiply?

Lately the question has been on my mind - is our family complete?  I feel quite happy with two children.  I think the number is easy to handle and it’s what I always imagined my family to be.  I don’t want to go through pregnancy or the newborn stage again.  Personally, I am complete.

But does that mean that my family is as well?

I know my buddy will learn more from siblings than any other source.  Does he need more?

I think about monkey bear years from now with the task of caring for aging parents and keeping an eye on my buddy.  Is it fair to have that burden be solely on her?

I want grandchildren.  OK, so it’s a little premature for those thoughts, but all my eggs are in one basket (so to speak).

And lets face the facts.  As my mother-in-law liked to say before I had kids, “You’re not getting any younger.”

How do people make that kind of a decision?  I can barely decide what book to choose for the book club.  Is it worth messing with my sanity now just to possibly improve the long term future?  And there is no guarantee that any child will grow up to be responsible and helpful.

Perhaps I’ll start believing in a higher being and leave the decision to them.