Smile time’s a comin’

Shade sporting the Tarantino Suitcase, a hitman’s goatee that we had to fill in with Sharpee to connect the stache to the beard. Universal policy. It lasted about a week until Aitza put a stop to it because all his white sleeves were stained gray from where he wiped his face on his sleeves. Doh!

Shade is embarking on a new journey. This is sailing across the uncharted Atlantic to search for a new world. We’ve booked a surgery for him. Nerves harvested and grafted. An electric journey across his face. It’s going to do wonders for his smile.

On Thursday, at 2:30 PM EST, March 29, 2018, we travel from Orlando to Raleigh-Durham for Shade’s appointment with Dr. Jeffrey Robert Marcus, MD of Duke University. He’s one of the top Plastic and Reconstructive Surgeons in the country. They did various scans and tests and determined he was a good candidate for a nerve graft. Of course, I told you all this on the Facebook post for his fundraiser so sorry to be redundant.

So this Friday, he’ll be prepped for surgery. After he’s under, Dr. Marcus will remove a nerve from his calf and graft it from his left cheek to his right. They go in under his lips and insert the nerve.

They’ll also lifting his right eyebrow and lower eyelid. It doesn’t close properly and tends to droop, causing his tears to run out and his eyeball to dry. It’s painful and we have to constantly keep his eye lubed and taped at night. The stitch will pull the corner of his right eye up so it holds the tears and potentially allows him to close his eye.

Then comes the recovery period.

I’ll keep you all informed about Shade’s Progress during this procedure. Here’s to symmetrical smiles and blinking eyes.

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Finding Focus

The explosion that erupted in Shade’s skull over three years ago knocked out his focusing ability. Shade has the attention span of a pyromaniac in a candle shop. Ooh, all the pretty lights.

Though his intelligence centers were not damaged by his stroke, short-term memory and focus did not fare so well. The MRI looks like someone tap-danced in those areas with golf spikes.

Thus, Shade’s school work suffers. He lags in class because he’s incapable of trudging up Homework Mountain without a study Sherpa to carry him. For example, he’s way behind in American Government class. Getting him to read the Articles of Confederation is like getting a Chihuahua to, well, read the Articles of Confederation. They’re both preoccupied with yapping at cats. (Shade’s cat fetish has not waned.)

So for every single homework assignment, someone has to sit and read with him, and explain with him, and write a little. Then read again, and

Shade getting study help from big brother, Edwin, and little brother, Mayan.

Shade getting study help from big brother, Edwin, and little brother, Mayan.

explain with him again, and write a little. Often it’s Mami. Sometimes Dad. This week it was big sister, Arianny, who’s in town for a week. It’s exhausting for Shade and for the Study Sherpa. It takes ages.

Shade’s not dumb. He gets the ideas. But then forgets them. And then gets them again. And forgets them again. Partly because he suffers short-term memory loss. Partly because he can’t pay attention long enough to transfer info to his long-term memory.

School demands focus if he’s going to acquire enough knowledge to have a career. A career demands focus if he’s going to keep his job.

How is Shade going to perform brain surgery if he can’t focus on the brainy bits? That’s a career tragedy waiting to happen: “Now, we just need a micro-incision right here in the meninges and … Hey, look at that beepy machine over there. Oops.”

So we’re trying something new. Shade’s neurologist, Dr. Kojic, has prescribed him Vyvanse, a drug often used to treat ADHD. (Back in my day, they didn’t have ADHD. They just called it fidgeting.)

This is a new edition of Shade’s Progress. The Focused Shade edition. Tomorrow morning (Thursday, October 2), Shade will take his first Vyvanse and we’ll see if he can switch from Dog Chasing Squirrel mode to Laser Beam Focus mode. We invite you to join the journey.