Tuesday, May 28, 2013

A Quick Update

A Quick Update, because it's been forever!

Life as we know it is nothing like life as we used to know it.  Seriously.  Poor Aidan has been through so much change lately, and all I can do is stand back and admire how he handles everything.

From the medical side - He was scoped, it went well, results came in, they were more or less ok (more on that later), and we are keeping him on Elecare Jr. for now.  His next procedure is a tube change in IR on July 9th.  He is still very slow to gain weight - weighing in at 25 pounds even.  He has been struggling for the past week with a Strep Infection around his tube site, and the antibiotics make his tummy feel gross.  Poor Buglet.

From the Early Intervention side - We have new therapists galore!  We were finally assigned a Social Worker to help us navigate the sea of medical assistance paperwork.  We also have our speech therapist every other week, and a behavioral therapist weekly, and a sensory therapist weekly.  So far, I really like them all.  I feel like we've really lucked out this time around.  More on all of that later too!

On the Home Front - Megan and the dogs no longer live with us.  From our perspective, it wasn't sudden or unexpected, but it's certainly a change for Aidan.  Aidan is also no longer being nannied by Megan - and is no longer with his two best friends all day long.  THAT has been a tough change - every time we go down in the basement, he asks for Teddy and Chase.  It's heartbreaking.  But he has been in his new daycare for a week now and he's adjusting really well.  Dropoffs are difficult (aren't they always?) but the teachers are so sweet  and so willing to work with us.  I want need this to work out so, so badly.  More on this later too, I suppose.

We're hanging in there.  We're still smiling.  HE is, anyway!

Tuesday, May 14, 2013

The Night Before Scope Day

'Twas the night before Scope Day, when all through the house
Not a creature was stirring, not even a mouse.
The feeding bag was hung from the IV pole with care,
In hopes that the surgery date soon would be there.

The little boy was nestled all snug in his bed,
While visions of Blue's Clues danced in his head.
And I with my pillow, and daddy with his CPAP,
Had just settled our brains for a few hours’ nap.

When in the boy's room there arose such a clatter,
I sprang from the bed to see what was the matter.
Away to his room I flew with a jump,
Tore open the door and silenced that pump.

The moon on the crib, all cluttered with toys,
Gave the luster of mid-day to the face of my boy.
When, what to my wondering eyes should appear,
But a kinked feeding line, somehow wrapped 'round an ear.

With a looping figure 8 tied in such a bow,
I knew in a moment, toddler hands made it so.
More tangled than a rat's nest, this feeding line was,
The pump sounded and alarmed, and continued to buzz!

It Beeped! It Buzzed! It Alarmed and it Sounded!
It Blared! It Bleated! My head, how it pounded!
Inside the room, and out in the hall!
Now Silence it! Silence it! Silence it all!"

I knew that I'd bought myself but a minute or so,
But I could act quickly - I'm really a pro!
So over to the crib, my nimble feet flew,
To shut down the pump, and disentangle him, too.

And then, with a rustling, I heard in the bed
The stirring of a child, as he picked up his head.
As I drew nearer the crib, and was turning around,
Up popped my Aidan, with barely a sound.

He was dressed all in fleece, from his head to his toes,
And formula had soaked his jammies and bedclothes.
A bundle of toys surrounded the chap,
And he seemed to be ensnared in a feeding tube trap.

His eyes-how they twinkled! His dimples-how merry!
His cheeks were like roses, his nose like a cherry!
His droll little mouth was drawn up like a bow,
And the rivers of formula were as white as new snow.

Scraps of medical tape he held tight in his hand,
As the puddle around him continued to expand.
A sweet little face and a little round belly,
That shook when he laughed, like a bowl full of jelly!

He was happy and plump, (the tube was doing the trick),
And I smirked when I saw him - this boy's clearly not sick!
A wink of his eye and a twist of a smile,
I should have known then, we'd be up for a while.

I spoke not a word, but went straight to my work,
Unwinding the tubing, and mopping the murk.
Laying him down in a clean and dry bed,

Backing out the door as he rests his small head.

Then he sprang to his feet, blankets and pillows askew,
As out of that room this tired mama flew!
But I heard him proclaim, as I ran out of sight,
"More Elmo Brush Mommy!  No more night night!"