Thursday, June 28, 2012

Belly stickers for all.

This morning we had the BIG specialist appointment.
The appointment that was likely to result in major reconstructive surgery for YH.
Surgery that would be scheduled as soon as possible.

I was nervous. So so nervous.
I went out last night with some friends and tried to steady myself with the comforting bite of Hendrick's and tonic.
Didn't work.

I got home and tried to sleep.
Didn't work.

I tossed and turned and battled the "what ifs" until dawn.

YH woke up a little before 7am. I heard him start to moan and I jumped out of bed. I opened the doors to his "room" (an attached flex space in our bedroom) and scooped him off his mattress.
He was bleary eyed and cuddly--my favorite.
We got back into the big bed and he curled in the space between my knees and my chin. I held him in my arms as he began to fully wake up.

He waved his hands and babbled to himself. He honked my nose and kissed my cheeks.
I buried my nose in his hair and apologized for what the morning would bring.

We got up. Ate breakfast.

I stuffed my purse with his favorite toys and books.
I dropped the big kids off at my parents' house.

"Haraboji? Halmoni?"  Over and over from the backseat as we drove away.

At the children's hospital YH grew quiet.
He remembered this place.
He did not like this place.

We made our way to the third floor--craniofacial and reconstructive plastic surgery.
I filled out a million forms.

A baby came in and YH went over to her and gently stroked her arm.
"Ai-po, aegi. Ai-po."

The nurse called us back and YH's tears began to flow.
Just like last time.
The nurses were SO GOOD. They worked around his distress, did their best to get the necessary measurements without making him more upset.

Next came the two PA's. One for the neurosurgeon and one for the plastic surgeon.
They asked questions about his background, measured his head, looked in his ears and eyes.

He stayed on my lap while they were in the room.
He whimpered throughout.

The PA's left and told us they would be back with the plastic surgeons and the neurosurgeon.
We would all discuss treatment plans and surgery.

In the quiet, just the two of us in the sterile room, YH and I played with a toy car. We made it roll up and down the examination table. We made it hide under the crinkly paper.
We put it on the doctor's stool and spun it around and around.

We laughed! It was so much fun!

In the middle of a spin, there was a knock on the door.
YH froze as the whole craniofacial team filed into the room.
He looked at each face. He shuddered.

And then he decided the situation called for fist-bumps.

He walked to each person and held up his tiny fist expectantly.
And each doctor, each stuffy medical expert, bent down to fist bump my boy.

And he smiled. And he laughed.
And it was all ok.

****                     ****

As the doctors talked, one by one, YH walked around the room putting stickers on their bellies. The PA had a pocket full of stickers and she would dole them out to YH any time he wandered by. He took the stickers and carefully peeled the backing off before affixing the image to the dress shirt of his choice.

The doctors said his condition is mild. It is the one type of craniosynostosis that doesn't automatically require surgical intervention.

They said he was handsome. They said if he showed any signs of developmental delays they might recommend a different course of action.

They watched him climb around the room and laugh and interact with their colleagues.

The neurosurgeon turned to me and said "He seems really smart, you know."
A neurosurgeon said my son is smart! 

So for now, we wait. We see the pediatric opthamologist and make sure YH's vision impairment isn't caused by elevated intracranial pressure. We watch for any changes in his head shape. We pay attention to any headaches, dizziness or developmental delays.

For now--we put surgery on hold.

The relief I feel at this news is overwhelming.



  1. Wonderful news! So happy for you and YH :)!

  2. That news deserves a double fist bump!