Friday, November 9, 2012


Sam at a Halloween party, sitting with the
"mystery" gorilla

Tuesday evening....
The girls are in bed.  It's just Sam and I, snuggling on the couch.  Kevin is still at the town hall serving as election judge.  Sam is on my lap, belly to belly and looking up at me with that smile that gets me every time.  He does one of those long "aaaah" sighs and smiles his biggest smile - the kind that reaches his eyes and tugs at my heart.  Then I get the goosebumps.  You know, the kind that nearly bring tears to your eyes.  It was like a surge of love and pride for my precious guy.  After the day he'd endured, it's a miracle that he's got any smile left in him at all.  But the fact that he does, makes me love him that much more.

Right after Sam was born, the staff at our hospital scheduled us to attend a Down Syndrome Clinic at the Coordinated Treatment Center.  Basically, instead of me taking Sam to eight different appointments, to see eight different doctors in eight different locations on eight different days, we go to one place on one day and the appointments and doctors come to us.

That day was Tuesday, and we had to check in at 8:00 am.  For a little guy who's used to sleeping until at least 8:00am, it's been a long morning already.

First stop - cardiology for an echocardiogram.  Sam should have had this within the first few days of his birth, but because the pediatrician believed his heart sounded perfect, we never had the test.  I had asked about it several times since then, but was always told he had a good heart.  I had come to terms with the fact that the doctor was probably right, until I read an article that said "it's extremely important for every newborn with Down syndrome to have an echo."  Why?  Because there is a 50% of major heart complications.  50% is pretty huge - you are either on the good side of a coin or the bad.

The echo took nearly an hour, partly because Sam was getting restless and had no intentions of sitting still.  But also, we discovered that because of the placement of his heart, it was hard to find 'windows' between rib cages to get good pictures of the heart.    In the end, the technician was able to get enough views to conclude that Sam was indeed on the "good" side of the coin.  We also ran an EKG to get a baseline for his charts.

He has a good heart.  This makes me smile.

Next, we were off to meet with an occupational therapist who conducted a Bayley's assessment on Sam.  This basically was a series of tasks to see where Sam was at with his development.  He scored at a 6 month level for his cognition (smarts) and gross motor (rolling, pushing up on arms, sitting), which means he is at the low end of normal and not yet considered delayed.  However, when the OT put a Cheerio in front of him and he didn't grab it, or the shiny red block, or the little yellow duck, he scored at a 4 month 10 day level, meaning that he is "significantly delayed" in his fine motor skills.  At first, I felt very defeated.  I ask myself every day is we're doing enough for Sam for him to achieve, and this felt like a little slap in face saying "no you're not doing enough."  But when I look back now, considering the circumstances, I wouldn't have grabbed that stupid Cheerio either.  He was hungry and exhausted from the echocardiogram.  He was sitting in a Bumbo chair longer than he's used to, so he was getting physically tired.  The last thing on his mind were the Cheerio, block and duck.  He does have some fine motor skills, and it may take a little concentration on them to get them to develop to where they need to be - but it's not something we can't do.  We're on Sam's schedule here, not Bayley's.

Halloween - with Grandma, sisters and cousins
After OT, we met with a nutritionist.  We talked about what Sam eats, how often he eats and stuff like that.  It was pretty basic.  She encouraged me to include meat in his diet.  Have you opened up a fresh can of Gerber Turkey with Gravy lately?  It looks, smells and, I assume, tastes like cat food.  Ugh.  After some calculating, we also determined Sam is in the 89th percentile for height and 87th for weight on the "normal" charts.  They do have adjusted charts for children with Down syndrome, because typically, they grow at a different rate.  Apparently, Sam is in the 100th percentile for both height and weight - meaning that if you were to put Sam in a room with 99 other kids with Down syndrome, he would be the biggest.  Not in the top ten, not the second or third biggest, but THE biggest.  That's my boy!

Speech therapy.  It sounds weird, because he's not exactly spitting out words yet, but it's something that is developing constantly, even at this age.  There's not a whole lot to work on here for now, other than to introduce new foods with different textures so that he has a chance to learn how to manipulate them around his mouth.  In doing this, he will develop the muscles in his mouth, hopefully making learning to talk easier down the road.

We then met a social worker, who provided us with applications for programs that Sam may be eligible for because of his diagnosis.  I struggle, because I have pride, and don't feel that we need any "help" from the state.  But I did learn some interesting things.  For instance, if we feel that we need to be concerned about Sam wandering out of the house in the middle of the night when he gets bigger, we can apply for funds to help install an alarm system in our home.  Or if there are any other improvements that would need to be made to our home to better Sam's life, we can apply for those funds.  It's still hard to think about accepting any help, but the bottom line is that we will want to do everything for Sam that we possibly can - and we are thankful that programs are in place to help people like Sam, both now as a child and later when he's an adult.

We met with an audiologist to test Sam's hearing as well.  He passed the first test (I forget what it was called) where the audiologist measured the pressure in front of and behind the eardrum.  The left ear was great, the right ear was "ok."  In the next test, (I forget the name of this one too...super mom, eh?) sound was administered into both his ears.  His left ear passed, but his right ear had trouble.  The doctor encouraged us to schedule an appointment with an ENT and to have Sam get tubes.  There is such a huge window of language development right now for Sam, and for him to be able to hear things properly is imperative.  It's likely that he has fluid built up, and tubes will help to keep that clear.  We have yet to schedule that appointment.

At some point during one of these visits, Sam's godmother Kim came to join us for the day.  Kevin was unable to attend these appointments because he is an Election Judge, and after all, it is election day.  Kim will tell you that I didn't need her there, that I had it under control.  But I will tell you, it was wonderful to have someone there with me.  Not just to have someone to help hold, feed and change Sam, but someone to keep me strong.  There were a few points throughout the day where I just felt defeated - but having her support there was wonderful, and it helped me get through the day.  In trying to find someone to fill Kevin's shoes for the day, I wanted someone along who would listen as intently as Kevin would have - someone who loved Sam as much as we do.  Kim was the obvious answer.  I am very thankful she could be there with us - especially in the waiting room at the lab...but that story will come a bit later.

Mom's cousin Amber - she's the biggest baby lover EVER!
We got to meet with a pediatrician.  She was fantastic.  She answered so many questions that I had, and still took the time to pick Sam up and snuggle him.  Not many doctors do that these days.  In giving him the once over, she pointed out that he has "chubby boy syndrome" - I won't go into details here, just for the sake of Sam's dignity - but it's sure better than what other doctors have called it - "the magical disappearing penis."  I don't have a penis - but if I did, I'd be mortified if it could "magically disappear."  So, we'll take "chubby boy syndrome" and know that down the road when we're not so chubby, our plumbing will reappear.  The pediatrician also pointed out some really positive things going on with Sam's body - his magnificent heart, his size and strength, among other things.  She said to me "Sam was born with a certain amount of potential, and it's our job to unlock it."  I have taken these words to heart and will live by them.  It makes perfect sense.

Ok, I think I've covered all the stops we made....oh wait, I almost forgot the lab waiting room.  We had left our coats, stroller and diaper bag on the first floor in our "base camp."  Naturally, Sam would choose a waiting room on the second floor to do his business.  And I'm talking DO his business.  Have you ever changed a diaper whereby more of the poop is on the outside of the diaper and smeared down the leg than what's actually inside the diaper?  Yes, this was one of those diapers.  Kim hustled back to the first floor to grab the diaper bag.  In the meantime, I held Sam out away from my body to avoid any more crap being smeared into my favorite bluejeans.  The receptionist brought over a large paper towel to help.  Kim got back and we booked it over to the nearest bathroom.  Guess what's not in the bag?  Guess what's sitting on the bed in our base camp room?  The wet wipes!  No worries, we can just use paper towels and wet them down.  Sure, no problem...until Sam decides to pee every time the towels touch his hind end.  No joke, he peed FOUR times on that changing table - and you're thinking I'm pathetic for not getting the diaper on him quick enough.  But here's the deal - I was down to my last diaper and I had no choice but to soak it up with the paper towels and save the diaper for the hour long ride home.  It took about a dozen paper towels, and the onsie went in the trash because I wasn't carrying that stinky thing around with me - but we got the job done and headed back to the lab.

They drew a LOT of blood, for a CBC and a thyroid screen.  Sam screamed his head off the whole time.  Poor guy, and he didn't even get a sucker when it was over.

The only thing we missed during the day was our eye appointment.  He was supposed to see an optometrist, but after the pediatrician had seen him, she determined it would be better for him to see an opthalmologist.  Sam spends a lot of his day with his eyes crossed, and I'm assuming it's because of a focus thing.  The doctor told me that most infants grow out of this by about three months when their eye muscles get stronger, but Sam's never did, so now we have to see an eye doctor.  That appointment is next week.

Last but not least, Sam got his second dose of the flu shot and we were sent on our way.  We arrived at 8:00am, and left just before 4:00pm.  It was a seriously long day for both of us.  But, I will say it was a great day.  A couple small hurdles were tossed on the track in front of us, but they're not anything we can't leap over and keep on keeping on.   Go Team Sam!

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