Wednesday, May 22, 2013

The Green Eggs and Ham were good, and so were the last 52 days

So first off, I need to apologize for not keeping up with this blog for nearly the past two months.  It seems like life is getting busier and more and more hectic every day!  For a while, I really didn't have anything pressing I needed to write about.  Then I did have things I wanted to share, but I didn't have the time to share them.  And then, to top it off, my internet quit working for two whole weeks!!  Do you know how hard it is to survive daily life without internet?  I know!  It's tough!  After a short and rather embarrassing call to our internet service provider, we worked together to resolve the issue.  It turns out, it was Sam's fault.
My pal Jodi! I LOVE her!!
Our little man has been busier than ever in the past couple months!!  First of all, the birthday went great!  36 members of Team Sam piled into my parent's house on March 30th and about 30 seconds after everyone got there, Sam freaked out.  I'm pretty sure he was just overwhelmed by all the people.  I was too afterall.  Marie read "Green Eggs and Ham" to the crowd and we devoured LOTS of food!  Sam cried through the entire meal and refused to really eat much of anything without screaming at it first.  We moved to the living room to open gifts...sure the first one had his attention, but after that he wanted nothing more than to bury his face in my chest and escape the party.  He received so many nice gifts from everyone!  After gifts, it was time for cake...that was the ticket to Sam's happiness.  The very second I set that cupcake down in front of him, he stopped his crying and screaming and he dug in with a vengeance.  He smeared cake up and down his tray, himself and all over Grandma Robbie's kitchen.  (No worries, Sadie the dog cleaned it all up)  And from that cupcake on, he was a happy camper! 
Before the cupcake....

My baby is no longer a baby, he's a big one year old boy.  His birthday was fun and we celebrated his life with love and laughter,...and I was able to let go.  I forgave myself for the tears and I'm moving forward with a heart filled to the brim with hope.

A couple of weeks after his birthday, Sam started to push himself up to sitting all by himself.  A couple weeks after that, he progressed from tucking and rolling all over to get where he wanted to go, to scooting himself forward inch by inch.  Two more weeks pass, and this boy is cruising!  He can army crawl like it's NO one's business and he's been known to disappear on us.  He has a fascination with doors, and if I leave a bedroom or bathroom door open, he crawls into a room and shuts the door, leaving us to wonder "where is Sam?"  It turns out he crawled into my room one day and turned the switch to the modem off, creating a lack of internet service.  He's growing and he's moving, he's learning and developing every day and it's so beautiful to watch.  The day he learned to turn the pages of a book all by himself, I cried.  I try not to make a big deal out of these little things, but they're not little things anymore.  Everyone in this house recognizes it.  Sam sucked out of a straw for the first time and I thought the girls were going to tear their vocal chords they screamed so loud with excitement.  
After the cupcake!

We attended the Coordinated Treatment Center's Down syndrome clinic again in May.  The day was exhausting once again, but very informative.  We met with a Speech pathologist who recommended we start speech therapy with Sam in about six months.  She talked to us about sign language and how to help Sam learn some basic sign language - just enough for him to communicate his basic needs with us.  "milk" "more" "eat" "book" "all done"  He really hasn't made any progress with language lately, but his ECSE teacher is not concerned.  He's been making such huge strides in other areas, it's very common for another area to slow down or temporarily shut down.  
Grandma doesn't mind cake smeared all over her kitchen,
as long as her Sam is happy!!

We met with a dietician, who took one look at Sam and could tell he's a good eater.  Other than adding a multivitamin to his daily intake, she was very happy with his growth and eating habits.  

Physical therapy wants us to look into some ankle/foot braces that will help prevent problems with his ankles when he starts standing on his own and working on walking.  We haven't ordered them yet, I pray they come in a camo print. :)

Occupational therapy....remember the Bayley's assessment?  We had to go through that again, but this time Sam picked up the Cheerio and devoured it before she had a chance to tell him to do just that.  His cognition was measured at about a 10 month age, fine motor 12 months and gross motor 11 months.
These two have a very special bond...except for when
Jessi forgets where she's swinging her rear-end and Sam
happens to be in the way....

Audiology - Sam underwent some "big boy" hearing tests, and passed with flying colors.  The tubes are working well, and there are no concerns about his hearing at this point.  We pray it continues to go that way.

Vision - Sam's prescription has been reduced by half, so his glasses no longer look like Coke bottles. 

The pediatrician was great and answered many questions, as did the Social Worker.  She hounded us about getting our application for MA completed.  It's still sitting in it's envelope on the desk...someday I'll get around to it.  

This is what happens when my sisters
get ahold of mom's LIPSTICK!!
Our final stop at the clinic was the lab to draw blood to test for Celiac disease and thyroid issues.  The lab tech in training poked around in Sam's arm for a minute or two before the instructor stepped in and did it in under 30 seconds.  Sam was screaming his lungs out and I thought Kevin was going to toss the student out the window.   

According to the professionals at the Down syndrome clinic, it's time to start direct therapies...meaning after another assessment (of course) Sam will begin weekly occupational and physical therapy outpatient treatments at the hospital.  It's overwhelming to think about adding more to our plate, but I have to believe that if it's best for Sam, it's a must do.

We walked away feeling's not like there's any "good news" associated with Down syndrome.  Sure, the good news is Sam's heart is good, unlike half of kids born with Down syndrome.  Sure, the good news is Sam's hearing is up to par, unlike so many children born with Down syndrome. But in general, there's not a ton of good news.  Hearing that your thirteen month old son has the cognitive ability of a ten month old is heartbreaking.  But there is something good I can say about his cognitive ability...and this isn't something that can be measured with a Bayley's assessment.  This is something that only a heart can measure.

This is what love looks like
When Sam wakes up in the morning and I go up to his room to pluck him from his crib, he lifts his head from the mattress and before he even finds the energy to open his eyes, he's smiling.  When I change his diaper, as we leave the room we walk past a large mirror and every single time he starts jumping in my arms with delight at the sight of himself and me together.  When his sisters walk in the room, he grins from ear to ear and anticipates their tickling.  When he goes to give Kevin his "night night fives" before bedtime, his face shines with love for his daddy.  There's this theory that people with Down syndrome are "always" happy....and I've learned, that is far from true.  But Sam, I believe, truly understands love and happiness, even at his young age.  He always responds to our loving words and gestures and there's a sparkle in that boy's eyes that I've never seen before.  He might not be as "smart" as the books say he should be, but he's by far the wisest person in this house.