What's the Difference?

It has been a while since I've given an update on Annie.....

This could be because for a while we were consumed with all things Christmas, and since Christmas we've been consumed with snow.  lots of snow. 

 

 

Or it could be because most days, I can't even find time to get the essentials done much less sit down to write (or even go to the bathroom!)   I mean, we've got kids hanging from the rafters!  (Well, we don't have rafters.  But if we did, there would surely be someone hanging from them!)

 

But ultimately, I haven't given an update because there hasn't been a whole lot of news to report!  (and that, my friends, is good news!!)

Annie is finally gaining weight pretty steadily!  Dare I say she's even chunky?  Oh I love me a chunky baby! (I love me a skinny baby too!)  At last weigh-in she was 17.5 lbs! 

 

She had an appointment with the cardiologist last week.  Let me tell you, these appointments rival any P90x or Turbo work-out (well, not that I know that from experience), as we try and keep her contained (and entertained) for the 2+ hour appointments!  For starters, Annie, Matt, the ultrasound tech and I were sticky from head to toe from her "distraction" (aka, a sucker!), but by-golly they got a successful echocardiogram without having to sedate her!!   Matt literally had to pin her down for the EKG and blood-pressure check, she tore apart the exam-table paper as they tried to measure her, nearly leapt off the scale as they tried to weigh her, and chewed on the stethoscope as the doctor listened to her heart.....And????  Her heart function is great!  Less than one year since her surgery, Dr. Butto couldn't even hear a murmur anymore!  Wow!!  There's one area he's going to keep an eye on - She has some scar tissue on the aorta, near the valve, which may possibly pose a problem with blood flow down the road, but it's not a huge concern yet.  Next appointment is not for another 6 months! 

She "graduated" from the 12-month tummy-time study with the U of M Doctoral candidate.  Although it was neat to be a participant , I must admit it feels good to have one less appointment!

She still has physical therapy every week, and we meet monthly with her intervention team.  Their main goal at this time is to get her walking.  She was doing really well with 4 point crawling (up on both knees, keeping her hips in line), but has started swinging one leg out, kind of like a little frog (that darn uber-flexibility!)  Soooo, back into her "skinny shorts" she goes!   (and like her mama, she hates skinny-anything!!)  The delay in walking is truly NBD!  This mama is in NOOO hurry!  Had this been our oldest, I'd be freaking out!  Now?  Not so much....... She'll get there!

 

(These photos from therapy are done from afar, and unbeknownst to Annie. 
If she catches sight of me, it's all over!)

Not that I haven't had my share of freaking out with Annie......There was the diagnosis of her heart defect & disability, her birth & time in the NICU, her slow weight gain, her open-heart surgery and recovery....and her lack of teeth (still, nada one!)    But through it all, Annie is "just" a baby.  And truthfully, most days I no longer see Down Syndrome when I look into this little lady's eyes.  Had you told me I'd be at this point a year ago, I'd never have believed you.  That's ALL I saw before - and for a time, after - she was born.  And it's all I assumed others would see.  I was surrounded with reminders.  Three of my nieces, several friends, three of Matt's cousins and his brother all had babies within a year of Annie (holy baby boom!), and I used to anxiously contemplate:

"What is it going to be like to watch these "typical" babies grow up alongside Annie, and blow right past her in milestones?"

"What if there comes a day when they won't want to play with her because she's different?" 

 

(Here she is with a few of the aforementioned "baby-boomers"  So far, not so sure what I was concerned about!)

 

 

Now, I look at Annie and I understand that she is exactly who she is meant to be, with the family she was meant to have, and I feel overwhelmed with gratitude....

Time is marching on, and, as they say, time heals all wounds.  

Today, I feel healed. 

But some days, dare I say, I miss the wounds.  Looking back, I realize that those times when I was entrenched in fear, pain and mourning was when my soul was most alive and I was acutely focused on what truly matters!  My relationship with God became my lifeline, my marriage was strengthened, and my true friends were revealed.  I will never forget how she has changed me.  Changes me.  Every day.  And I would go through it all over again, over and over again, for this girl. 

I personally made a big step last month!  I did something I swore I wouldn't do.  Something I swore I didn't need.....  Annie and I attended a "play group" for children with Down Syndrome.  This group meets monthly, and is led by a doctor who works with special needs children, and has an 18 year-old daughter with Down Syndrome.  She also leads a parent group that we plan to check-out soon.  

And what did I learn?  I learned (or rather, confirmed!) that these are some pretty amazing kids- and families- and I'm both inspired and humbled to be a part of this community.  I'm sure I will have much to share from my new wealth of resources as I continue to learn, and to grow, right alongside my daughter.  (And I learned that Annie has no trouble making friends... #lifeoftheparty!)   

Are they not the CUTEST???

 

And lastly, one of my favorite slogans for Down Syndrome awareness is "More Alike Than Different!"  How true it is!  Annie really is no different than any of our other kids.  In fact, I fully expect one day she'll be hanging from the rafters too.....if we had them.  

So, as I close this first chapter of her life, allow me the privilege to share just how "alike" Annie really is:

She loves "helping" with dishes, laundry, and other household chores

 

She loves the bath

She loves to eat.  Anything.

 

 

 

She's loud in Church (just take my word for it.)

She can hold her own in a battle (The boys call her "Annie-kin Skywalker!)

 

She loves a good party

 

She loves her brothers and sister, and they love her.

In fact, she's just one of the gang around here.

 

And that's how it will always be.  Annie is no different.

 

And for those of you who have followed this blog, Annie's friend Vincent is also doing great!  (For anyone new to the blog, you can read more about Vincent in the "Companions on the Journey" post from January 2014.  It's a pretty cool story!)  He also had a good check-up with the cardiologist, has 4 teeth (he always has been a carnivore!), and is just "one of the gang" at his house too!!