My Son Has Low Muscle Tone, But He's Strong as an Ox!

When Jacob was born, I read a bunch of the literature on what to expect.  Most of it depressed me, quite frankly.  I didn't want to know that Jacob had a increased risk of this or that.  I wanted to know what to expect in terms of development, and what virtually every child of Down syndrome had in common.

I quickly discovered that, like typically developing children, those with Down syndrome develop and grow at different rates, have different difficulties, and varying types of cognitive abilities.  However, one attribute, which appears to be across

the board for children who have Down syndrome is their low muscle tone.

Originally, I thought that meant Jacob would be weaker than typically developing children.  BOY was I wrong.  In fact, it was the exact opposite.  How is it that a a child, with an un-correct AVSD heart condition needed THREE nurses to hold him down for IV's?  Then there's the walking.  That happened at 13 months.  Where's the delay in that? And aside from a slight delay to catch up from being immobile the first 3 months of his life, Jake quickly built up steam and now exceeds nearly all physical expectations for kids his age.

And now that Jacob is 6 1/2, I'm forced to begin weight training because he is just about stronger than me.  Scary, huh?

So, low muscle tone does NOT mean weak muscles.  Then what does it mean? For a more detailed explanation, you can go to Wikipedia. They're the most straight forward and comprehensive. Essentially it means hyper-flexibility, and (sometimes) weak muscles, or muscle resistance.  For Jacob, it's TOTALLY hyper-flexibility.

Jacob's preferred position to sleep is folded in half, laying on his legs, occasionally sucking (or biting on his toe nails). Sadly, I don't think I've ever cut his toenails (please don't gag. I've done enough of that for all of us).

On the bus, Jacob wears a harness that has 2 straps for his feet, a vest that goes over his shoulders, and zips in back.  He's managed to slide out of that thing too.

He's slid out of his 5-point harness on his car seat (don't get me started on that one!), out of my arms if he's throwing a tantrum, or wedge himself into a drawer or a tiny cupboard.  I can't tell you how many times I've run through the house frantically calling his name, to find him grinning from ear to ear because he'd successfully hid from me. Sigh.

My boy is Houdini.  He can get out of EVERYTHING. If he were in a straight jacket, he'd find a way.
Luckily, he spends a lot of time in PT and OT, learning to strengthen his joints and his core.  Heaven knows, the rest of his body doesn't need to be any stronger.

Needless to say, this little boy keeps  me, and the rest of our family, on our toes!  Good thing we learned fast that low muscle tone does not equate to weak muscles, or any excuse to treat our child any differently from the rest of the kids in our home.

If anything, Jake's low muscle tone gives him an advantage.  Sometimes it's like the kid has four arms - quite handy when he and his 17-year-old brother are wrestling in the living room.  Or his hands are full, and he needs a little extra leverage with something he's playing with.

Never a dull day with Jacob around.  Never.

My Little Giant...

Yesterday I got to go into the Doctor's office and begin the first of MANY appointments to check on the welfare of Baby Jacob.  I'd been rather nervous because I had the impression that with so many visits he was looking for something. 

Luckily, I got an amazing ultrasound tech who was friendly, talkative, and took the time to explain everything she was doing in detail as she went, so there were no surprises.  What I discovered was that they were looking for 4 specific things from Jacob: 1) Amniotic Fluid.  Apparently one of the big things that can occur is that he won't have enough fluid, which keeps him from growing, and could obviously kill him.  2) Tone.  They are looking to make sure that he can open and close his hands, move his limbs etc.  3) Breathing.  Apparently, babies practice breathing in the womb!  This is especially important for Jacob because breathing problems is a big thing in Downs babies, so their requirement was that they needed to see him 'practice' breathing for 30 seconds straight within a 30 minute time frame.  4) Movement.  She said if the amniotic fluid is low, it is hard to tell if lack of movement is just baby sleeping or if it something else, but they need to check on it anyway. 

And.....of COURSE Jacob decided that right then was when he wanted to take his nap ;)  She began the ultrasound, double checked his, heart, measured his head, abdomen, checked out his kidneys, measured his amniotic fluid, etc.  Luckily he was more than happy to show her how his little rm could move, and we watched him open his tiny little hands.  He gave us a nice view of his face (I've got pictures to prove it!) and I was amazed at how he didn't 'look' like a downs child.  I don't know what I was expecting to see, but whatever it was, I didn't see it.  He looked just like Nathan, Elisha and Courtney did at that age - cute and pudgy! 

When it came down to breathing, he wouldn't breathe for more than a few seconds on his own because he was sleeping, so she gave me some juice, had me turn over a few times and ultimately broke out this little vibrating buzzer thing that he DID NOT like! lol  She'd put it up to my stomach, turn it on, and he'd kick it!  Finally, with only 4 minutes left in his allotted 30-minute time frame, he woke up long enough to practice his breathing for 30 seconds and viola!  Jacob got 8 points out of the 8 possible points available for the BPP test! :)

For the Growth scan, she basically measured his head, chest and thigh bone to see if he was on track growth wise for his age - we're at about 33 weeks now! And he wound up being in the 67 percentile range (at this age, most kids are around 73%, so he's pretty close).

After 45 minutes with ultrasounds I thanked my tech and headed to the Doctor to get the results. 

I weighed in - I GAINED 8 LBS IN 2 WEEKS!!!!! - Thank you water retention :(
I spent the first 8 months only gaining 10 lbs and in 2 weeks, I nearly DOUBLED my weight gain for the pregnancy. I am NOT happy.  My legs hurt, my hands keep falling asleep, I feel like a beached whale...oh the joys.

Luckily, they checked my blood pressure and it's still spot on, so no Pre-Eclampsia....yet.  But I'm sure they'll be keeping an eye on me.  Dr. Zweisler said, abnormal babies make abnormal pregnancies. So he's not ruling anything out yet.  Just waiting to see. 

We went over the results of both my ultrasound tests and everything looks good. We're still on track for a normal delivery around the 39-40 week date. And, with my track record of having to be induced with all three of the other kids, I'm at a high likelihood of being induced again.  So that begs the question of when do we want Jacob's B-day to be?  We could have it on Elisha's Birthday (the 24th), or on Halloween, or should we have mercy and have him on some other day of the week????

We looked at the Growth scan and Jacob is about 4.5 lbs in weight, so he's spot on.  I told him that stunting his growth may not necessarily be such a bad thing being as though Elisha is almost 5'10', Nathan is already 5'5 at age TEN, and Courtney is still growing an inch per month.  We all laughed and agreed that for this baby stunted growth may mean that he just ends up a NORMAL size!

So, I have another week until my next round of testing.  Until then, my little giant better keep practicing his breathing and kicking up a storm!  That way I'll know that he's been doing his homework for all of his test!