Dramatic Plot Twist

Inside Fort Matanzas

In a movie, whenever the camera pans across a scene of natural splendor, you can expect something bad to happen. It’s a cinema trope. Make the protagonist comfortable, and then drop a boulder on him. Without conflict, story doesn’t exist. So if a director says, “Let’s capture this stunning snowcapped mountain range glistening in the sun,” you can guarantee an avalanche is coming.

Last week I took Shade camping with the YMCA Indian Guides at Princess Place Preserve in Bunnell, Florida, about 15 minutes from St. Augustine. It’s a 1500-acre parcel of bucolic Florida wilderness. I never liked that word bucolic. It sounds like a respiratory infection. However, I think it fits here as the park is home to historic buildings such as an old livery stable, equestrian trails, a huge salt marsh, massive live oak stands, and Florida’s first in-ground swimming pool, fed by an artesian spring. It’s the epitome of a Southern pastoral setting nestled on the shore of the Matanzas River.

Standing atop Fort Matanzas

During the campout, we visited Fort Matanzas National Monument, which guarded St. Augustine’s back door. It’s about 14 miles south on the Matanzas River. The approach is dramatic. We started on the nature path which passed the banks where Spanish soldiers slaughtered a few hundred lost French soldiers who had surrendered. That’s how the fort got its name, which loosely translates to “slaughter.” We took a pontoon ferry across the river toward the looming fortress, giving us a good look from an invader’s standpoint. Guards in traditional Spanish soldier uniforms walk about and explain elements of the three-story stone fort such as the big cannons pointing down river to stop those nasty Brits or Frenchies from sneaking up and causing havoc. Shade climbed up the stairs and ladders to the top, where a large flag flapped to Hurricane Jaoquin’s distant exhales while gray clouds boiled overhead. We got a pretty cool pic of our entire group on the roof.

Fishing in the Salt Marsh

Afterward we went fishing in the salt marshes. The sun was positioned perfectly to reflect in the mirror water the cloud-blotched blue sky. We caught no fish (I don’t think I’ve ever caught one), but the view was magnificent. As we finished fishing, Shade’s buddy Cody noticed hermit crabs on the stones by the bridge. I grabbed twenty hermit crabs to tote back to camp for crab racing. I had big plans for a betting ring. We learned that hermit crabs are extremely shy and horrible at racing and within the hour, I had returned them to the salt marsh. We spent the rest of the night enjoying bonfires and brisket.

A beautiful weekend. From a movie standpoint, you couldn’t get more ominous.

The plot conflict came on the Tuesday afterward when Aitza took Shade to see Dr. Trumble. A few months back they performed an angiogram on Shade and discovered that he still has a small nidus, that little tangle of arteries and veins that caused his bleed four years ago. The Gamma Knife treatment performed on him in December 2011 destroyed most but not all of the arterio-venous malformation.

Here’s the dilemma. With each year, his risk of a bleed increases by 1%. The doc said if you’re 70-years old, no big deal. You may get up to a 10% chance of a re-bleed. You’re nearing the end of your rental agreement anyway, so to speak, and making big renovations wouldn’t be worth the risk. But a 16-year-old boy still has a good 60-70 years, maybe more. So in your later years, your percentage of a re-bleed may be 60-70%. The procedure has an 80-90% chance of destroying the rest of the nidus completely. I hate math.

The procedure has its own risks. The location in the pons (the brain stem, which is a dense nerve bundle) leaves him open to some more damage to surrounding healthy nerves, especially a few cranial nerves. Shade’s already got facial palsy and can’t shut his eye, but we don’t know how much more damage to his face it may cause. His coordination might be more at risk, too. Plus, the brain swells a bit when you shoot it full of radiation. Go figure.

The full effect of any damage is unknown until they do the procedure. Afterward, we’d have to wait three years to see if the procedure was totally successful. This would also be his last shot at destroying it because of the level of radiation Shade’s brain would absorb from this second Gamma Knife procedure.

Of course, damage from a bleed would be much more devastating. If it happened at all. Whatever decision we make, it’s going to affect the plot of this movie. I just wish Shade wasn’t the protagonist and that the dramatic plot twist didn’t involve his poor abused brain.

Steps forward

Shade visited his Neuropsychologist Dr. Westerveld today to see if he’s bonkers like daddy. Good news. My kind of crazy skips a generation.

Actually we got the results of his Neuropsychology Assessment Report, which analyzes his progress on behavior, reasoning, comprehension, memory, and processing. In some areas he’s progressing, in others he’s just floating in the pond. But the general outlook is positive.

He can interpret complex language, performs above expectations with visuo-spatial learning, and does okay analyzing visual materials and solving problems nonverbally. He continues to have difficulty with memory and his processing speed–his ability to interpret info rapidly without errors–is at terrapin levels. So his attempts at learning information are like trying to play World of Warcraft on a Commodore 64 using dial up. The info and intent are good, but the game’s going to go reeeeeeeally slow. That’s why his homework takes hours when it should take minutes. The good thing is his fantastic teachers at CFP give him plenty of time to work on homework. Thanks CFP.

Shade continues to gain steps in, well, stepping. He’s been practicing free walking. No crutches, walkers, or jet packs. Only Daddy behind him as his net, and Mami in front to cheer him on. Today he managed 10 steps at least 5 times. His record so far is 15 steps. A year ago he couldn’t do 3. At this rate, he’ll be running a marathon by his 21st birthday.

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.

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.

Plastic brain

I didn’t mention that yesterday was the five-month anniversary of Shade’s traumatic brain injury. Wow! Time moves so quickly. Time moves so slowly. Everyday, Shade sees improvements. More new memories are sticking. His balance is getting a bit better. It’s not fast enough for me, but I’ve always had an impatient streak. I think microwaves cook too slowly.

What’s remarkable is the plasticity of the brain. Neural paths that are damaged do not regrow, but the brain has the ability to reroute the paths. It’s similar to taking an alternate route to work when the highway is closed down. It may require some extra time and they might lead to some dead ends, but eventually the brain can find a new path to its goal. It seems the rerouting is more efficient and effective when there is a true need, desire or impression. That’s why Shade can remember things about his cat or a toy he wants for Christmas or the reason behind the painful cuts in his head (Gamma Knife Halo) but he can’t recall what day it is. Info about the day has no real relevance in his life. It’s extraneous information. But pain, love and Christmas longing forge their way into the memory.

Talking about the ability of the brain, I don’t know if your remember back when Shade was first in the hospital and there was a young girl, Maggie, who was in a car accident and had severe head trauma. She was in a much worse state than Shade, and her mom, Angie, was told that Maggie had no brain activity and would probably never wake up, that she would be a vegetable for life. Well, she’s now talking. It’s only about 10 words, but she’s awake and aware. Maggie has a huge journey ahead of her, but she’s taken a few steps in the right direction. When we were in the hospital and Angie was relaying the desperate and tragic details of her daughter, Aitza kept repeating the same thing to her. “Never give up.” And Angie kept the faith and now her daughter is coming back to her.

We keep the faith that Shade will fully recover. He’s built up some great momentum. I’m excited for the day when he can take his first steps alone, or run again, or hop on a bike. It’s like being a new dad. I know it’s coming soon. Just not soon enough.