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!

Tuesday, January 1, 2013


Sam's birth suddenly transformed our lives.  We were prepared for a baby, but not for a baby like Sam. But over time, we adjusted to a new "normal" and all is well.  But from the get go, that little guy has been completely in charge of himself, and he proves that to us daily.

December was a month of many firsts, big firsts, for Sam.  

On the 1st, Sam suddenly had a tooth.  When I say suddenly, I mean SUDDENLY.  On Friday, November 30th Sam did not have a tooth or even a sign of a tooth in his pink little mouth.  But Saturday morning, on the 1st, his first tooth emerged in a sudden burst of raw-red-pain!  At eight months old, and having sisters who started teething as early as 4 months, I was checking his mouth nearly daily for any sign of a tooth.  At 8 months and 1 day old, he popped one out for us to see.  Then on the 14th, he gained another tooth.  This one came in a little less abruptly.  He's quickly learning how to use his teeth out, he bites!

Sam, as I've mentioned before, is developing nicely and is considered "low normal."  One minor concern that his teacher and I had discussed were the sounds that he was making.  He was very vocal day in and day out, making moaning and groaning sounds with vocal fluctuations.  However, we had yet to hear any vowel or consonant sounds.  I asked his teacher about this sometime in November, and without seeming overly concerned, just said she's waiting to hear vowels and changing vowel sounds - like "aaah oooh".  I started talking to him like an alien and really enunciated different vowel sounds to him, contorting my lips in extremely awkward ways so that he could see my mouth making the different sounds.  Did it work?  No, not really.  He just looked at me like I was an alien.  However, on the 5th of December, Sam suddenly decided he knew how to talk!  In that one day, we heard all of these sounds: mama, dada, blah blah and lala.  Now he sits around chattering like a little chipmunk, acting like it's no big deal to talk!  I try to coax more "mama's" out of him as he mostly says "dada"....and whenever I do this, he chuckles at me, shakes his head and loudly says "dadadada".   

My girls all sat up at about the 6 month mark.  When 6 months, and then 7 months came and went, I tried so hard not to get discouraged and I had to remind myself that he WILL sit up when he's ready to do it.  But that didn't stop me from spending a lot of time working with him.  My goal was for him to be sitting up by Christmas, so that he could open his gifts.  We worked, and we worked, and we worked....all with no success.  I would set him on the floor between my outspread legs and he'd buck his little tush forward and fall back on me every time.  I'd try other ways of getting him to sit, but he'd stiffen his body head to toe like a steel rod and stand instead.  I tried plopping him on the floor with a boppy pillow behind him and walk away, and I'd find him ten seconds later face first on the floor or bent backwards over the pillow.  I was getting extremely discouraged.  With Christmas less than two weeks away, I had almost resolved to push my goal back a little.  Then, on Wednesday the 12th of December, I plopped him in the middle of the living room floor with the boppy behind him, and I walked away.  I waited for the telltale "whomp" as his face smacked the floor, but it never came.  After a minute, I peeked into the living room to find him sitting there, playing with a toy.  I stood watching for several minutes, as my little man suddenly knew how to sit, like it was the most natural thing in the world for him.  It was like he suddenly decided that sitting was no big deal and was his new favorite thing to do.

Sam has the appetite of a horse.  He has for several months now.  I had to start cereal at 3 1/2 months, and fruit and veggies at four months to keep him satisfied.  He liked everything except for peas, but can you really blame him?  At about 7 months, I started trying some "real people food" with him.  He tried spaghetti, tator tot hotdish, mashed potatoes, real banana, and stuff like that.  He would take the first two bites enthusiastically and then he'd pucker his lips shut and stick the tip of his tongue out like a little pink stop sign indicating NO more.  I'd keep trying and trying, but to no avail.  OT suggested trying a bite of "people food" followed by a bite of baby food, perhaps he was overwhelmed with the flavorful foods we were eating and just needed a break, a bite of bland food, in between.  That didn't work either.  Until Christmas Eve morning....suddenly, Sam loved people food.  In fact, he ate more of my biscuits and gravy than I did for breakfast, and at lunch he chomped down a half of a grilled cheese sandwich, and for dinner he tried and loved Aunt Vicki's meatballs, mashed potatoes and gravy.  He suddenly ate everything in sight and hasn't stopped yet!  Lefse, chili, pizza, beef stew, hashbrowns, toast, broccoli and even licorice.  Yes, I fed my baby licorice.  And you know what?  He LOVED it!!

It's New Years Day today, it's suddenly 2013.  I remember New Year's Eve last year, with friends, smooching on Kevin at midnight and getting teary eyed (remember I was pregnant at this time) thinking how tough 2011 had been and hoping for a better 2012.  Now, I can't remember what was so tough about 2011, but I found myself last night hoping for a better 2013 too.  2012 was an incredible year for me, for all of us.  My heart grew in ways I didn't know possible and my life has been changed in so many ways because of Sam.  Sam is nine months old, meaning I have only three months to plan his first birthday extravaganza, and three months to come to terms with all the emotions I felt in 2012.  I'm not saying that I have to change what I felt, because I can't do that.  But I need to forgive myself for beating myself up over what I felt when Sam was born.  His birthdate was the most difficult day of my life, and I cry now as I type those words.  Through everything I've learned and gained with his presence in my life, I still can't go back and change what I felt when I first looked in his eyes.  I can, however, forgive myself for thinking poorly of myself for what I felt.  It seems we all come up with different resolutions as we move into each new year, and I think my biggest goal this year is going to be forgiveness for myself.  I know that time isn't slowing down any time soon, and before I know it, Sam will suddenly be a toddler and then a teenager, and my other children will be grown and gone, and I surely don't want to waste a single moment more feeling down about what our lives are like now.  Every day is a gift, and can't be taken for granted,....because tomorrow, things might suddenly be different.