Sunday, November 7, 2010

You've come a long way, baby!

Tonight, Chaos and I gave Doc a bath.
Big Brother Chaos is super-protective of Little Brother Doc.  He insists on helping with everything for Doc from changing diapers to playing, even filling sippy cups and trying to read books to him.

I know- that shouldn't be a special thing, but it is.

Doc, has what his therapists describe as "sensory delays and issues".
This is Doc.
When Doc turned 13 months old, he got sick with a horrible sounding cold.  Since he'd had pneumonia once before, I took him into the ER to be checked out.  They did a chest x-ray and told me he had bronchitis, then sent me home with some medicine.  Three days later, we were back into the ER again- his bronchitis had gotten worse- he was gasping for breath.  Another x-ray happened.  While waiting for the result, the nurse came in and gave him a breathing treatment.  A few minutes later, two doctors walked in and quietly shut the door.
My son had severe scoliosis.  My baby- my wee little man- was most likely having breathing issues because his lungs were being crushed by his rib cage's rotation and spinal curve.
I was in a bit of shock.  I'd noticed that one side of his rib cage seemed to be at an odd angle to the other.  I'd even seen the curve on his spine, visible through the skin.  But, every doctor I had look at it told me there was nothing wrong- it was the position he sat in, or the direction he was looking, or some other excuse.
Within days I was being seen by the family GP.  She called in a referral to a pediatric orthopedic specialist.  He saw us two days later. One glance at my son's back and he ordered new x-rays.  He sat and played around on his computer screen measuring bone angles and determined that Doc needed treatment- ASAP.  He outlined all the options: surgeries, waiting it out, bracing, and EDF casting.
Without blinking I voted for casting.  (I hadn't been sitting on my butt doing nothing while waiting for the appointment- I'm a researcher.)
Corrective casting is safe, non-invasive, and fairly effective.

There were risks, after all, Doc had to be fully sedated.  I wasn't allowed in the room for the procedure.  And then there was the cast itself- it couldn't come off until it was time to change it out.
Imagine, going MONTHS without being able to feel his sweet, squishy little baby body in my arms.  Instead, all hugs were to a hard, itchy cast.
Doc waking up from his first cast.  Poor kidlet- he was so scared by the changes.  He was a real trooper, though, and was up and at 'em within a day.

I found a great online support group for infantile scoliosis.  They really helped keep me grounded.
I knew from others' experiences it could be years before we saw results.  We might not even see results at all.  We might end up needing to choose corrective surgery.

Imagine my surprise when, after only 4 months, his correction was sufficient to move on to a removable brace! 

Now I can hug his squishy sweetness all the time!  One day into his 2nd cast, he took his first steps!  He started trying to talk.  He started laughing- without coughing at the end of it.  He jumps and plays and scoots toy cars along.   

However, back to the bath at hand...
When I first got the diagnosis, I contacted the local Early Childhood Intervention people.  I didn't think there'd be issues with my little mister, but I wanted to advocate as early as I could.  After several assessments- we were assigned an Occupational Therapist, a Developmental Therapist, and a Physical Therapist.  Doc was about 5 months behind developmentally.  It was discovered during this time that Doc has his sensory issues- bathing was a BIG fight.  He wouldn't even touch water (or anything non-fluffy) with his hands.  Baths were few and far between- typically we'd end up sponge bathing him with a damp cloth while he screamed in panic.
The OT has been working to get him used to water and past his sensory issue with it since May.  And, I admit, she's made progress.  Little did I realize how much progress was made.
Tonight, since his face was smeared with peanut butter and bread crumbs, I filled up the plastic tote we've been using during therapy as a stand in bathtub and put it in the floor.  I cringed, waiting for the usual screams to start.

HE GOT INTO IT ON HIS OWN--- WILLINGLY and EXCITEDLY.  He didn't want to get out.

He let me wash his face.  He let me splash his hair.  He didn't panic, or scream, or tantrum.

I could cry.  Such a little thing, but I couldn't begin to imagine that it would actually ever happen.

Maybe, one day soon, I can hear that his scoli is completely resolved.  That would be amazing.

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