Sunday, January 27, 2013

Are we there yet?

Are we there yet?
Are we there yet?
Not yet.
Are we there yet?
Not quite.
Are we there yet?
Are we there yet?

Ever have all your children chime together and ask "are we there yet?" from the backseat of your vehicle?  When we go on trips, short or long, someone inevitably asks "are we there yet?"

We are having "are we there yet?" moments with Sam now.  When we go places and people get a look at how big and strong he's getting, they assume he's doing everything any other almost-ten-month-old would be doing.  They ask "is he crawling yet?"  They say "oh I bet he's cruising around the house now!"  They ask "is he pulling up on the furniture yet?"  They say "I bet he'll be walking soon!"

It's seems everyone's asking us "is he there yet?"

Nope, not quite...but he will be someday.

Nearly every individual with Down syndrome has something called "hypotonia."  Hypotonia, more commonly known as low muscle tone, can be basically described as muscles lacking stamina.  The muscles respond much slower than they do in a typical persons body.  As neurons develop though, the effects of hypotonia can tend to decrease as a child reaches about the age of 9.

Hypotonia also causes the muscles to tire more quickly, so while it's easy for other 10 month old babies to sit for a long period of time, Sam just plain old tires out doing it.  Other 10 month olds can move from sitting to a crawling position, down to laying on the floor and back up to sitting with no problem at all, but for Sam it's much different.  Each movement of muscle is learned differently than in typical babies, and each movement of muscle take a lot of energy.

It took a lot of work to teach Sam to sit and it took a lot of hard work on his part to get his muscles strong enough for him to sit on his own.  Now when he's sitting, we push him over (I know it sounds mean) to teach him how to catch himself.  We push to one side and show him how to put his hands on the floor and then we help shift his feet under him so that he's on all fours...and then he flops to the floor in one mad and exhausted heap of baby.  So, we do it again.  And again.  And again.  And eventually, his muscles will do what they've been taught.  We are also currently working standing by the furniture and the beginning motions for crawling.

A milestone? Posing for the camera?
Hypotonia affects every muscle of the body, facial muscles, muscles in the legs, arms and trunk - every muscle.  Often times, because of low muscle tone in the facial muscles, people with Down syndrome will require speech therapy.  Sam's teacher is already doing speech therapy with him and it's interesting to watch her show him different sounds with her mouth.  He hasn't yet mimicked us in these activities, but he is making different sounds which is a good sign.

Hypotonia is something Sam will just have to learn to live with - there's not a fix for it.  Fortunately, we're able to change his activities when he tires to give him a break and we hope that with time the severity of hypotonia will decrease and his stamina will increase.

Another quick update unrelated to hypotonia, Sam will be receiving his very own set of tubes on Thursday.  He's had two tympanogram tests performed.  Tympanometry is an objective test of middle ear function.  It's not a hearing test, but a measure of energy transmission through the middle ear.  Variations in air pressure are created in the ear canal and a measure response by the eardrum is taken.  After two of these tests, the doctors determined that Sam does have a slight hearing impairment in his right ear due most likely to some fluid built up in that ear.  The tubes should alleviate this and if theories are correct, he'll hear better.  I'm interested to see what it does for his language development too!  I was told that he's in a big window for language development right now and it's super important to make sure that he's indeed hearing things correctly so that he learns how to speak them correctly.

It doesn't bother me when people ask "is he there yet?"  It doesn't bother me that it took Sam two months longer to sit up than it took any of his sisters.  It doesn't bother me that he most likely won't be walking by his first birthday like most people would expect.  What matters is that he will get there someday and I'm proud of every achievement he makes!

There are milestone he's reaching that I didn't even know exist.  In fact, I find it kind of funny because most of these milestones aren't even considered by most parent with other kids.  Nobody pays attention to when you pick up your first cheerio or when you should have  picked up your first cheerio until you do it LATE.  Two milestones Sam reached last week were passing and object from one hand to another and apparently he's mastered "object permanence."  (I had to ask what that was.)  Object permanence is when a child learns that an object is still there even if you can't see it.  It's basically the "peek-a-boo" concept.  You put a toy on the floor in from of Sam and cover it with a blanket.  At first, he didn't do anything.  Eventually, he pulled the blanket off and played with it.  But now, he understands that the toy he wants is under the blanket - because he rips the blanket off and continues to play with the toy that you tried to hide from him.

We've also mastered the art of "smolder" out ladies!
Last night, we hit a HUGE milestone...something we've been working on in therapy for a very long time....something that has caused Sam many frustrated moments of exhaustion.  In one swift movement, Sam pushed himself up on all fours last night.  I jumped off the couch faster than a horse out of the gate when I saw it because it shocked me!  He's been so stubborn when we work on this and has made it very clear to me he's NOT interested in being on all fours.  But in true Sam fashion, he made the choice to do it and he did.  My new goal for Sam is to crawl from one side of the room to his pile of birthday presents...which means we have 62 days to get this crawling business down.

We can do it.  We're not there yet, but we are on our way!

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