Great first day of fundraising for Shade

 

Shade trying out the MyoPro’s sensors

Shade’s fundraiser to help get him mobile again started off amazing. In 24 hour, he raised 1/4 of the total necessary funds to get the Myomo Myopro robotic orthotic and the LifeGlider ambulatory device. It shouldn’t be long before Shade is back on his feet and using his arm again.

For those just tuning in, the Myopro is a robotic arm orthotic that will be custom made to Shade’s arm. With the use of sensors like those EKG thingies you have at the doctor, the device will pick up signals when Shade wants to move his arm and translate those to the robot arm. So even if Shade can’t move his arm, the robot arm will do it for him. That means he’ll be able to stretch it out and pick up a glass, grab a door handle and turn it, or defend the galaxy against xenomorphs.

The LifeGlider is like a walker but very different. It straps around Shade’s body so that his center of balance is supported. That way, he isn’t leaning forward and likely to fall. Then he can practice walking without the worry of tipping sideways and bashing his head against the counter. It will also improve his ability to dance the tango.

Both of these devices are going to help Shade achieve independence. Please spread this message around to all your friends and local businesses. Let’s get Shade mobile again!

To donate to Shade’s fundraiser, click here.

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Shadenator 9000: The Rise of the Shade-borg!

Let’s salute the great cyborgs of our time. RoboCop, Darth Vader, Inspector Gadget, and now the Shadenator 9000, the latest development in Shade technology. But first, this sci-fi tale needs some backstory.

As you are likely aware, Shade’s last two strokes three years ago (17 y.o) paralyzed his left side, wiping out any progress he’d made since his first stroke when he was twelve. (We’d just got him walking again, damn it!) Because his left arm and hand are so weak, they have tightened up, contracting the arm like an L and keeping his fist closed. This caused a vicious cycle. Because tasks are so hard to complete with his left arm and hand, he uses his right, and thus his lefty gets weaker and tighter. We were worried he might lose all use of it.

Then Aitza told me about a friend who started using a robotic device after his stroke and got full use of his arm again. And that’s how we discovered Myomo. It’s not a cult, I swear, though I may be an apostle after Shade and I went to try one out last week with Myomo representative Heather Ward.

Myomo, a contraction of My Own Motion, produces the MyoPro, a powered upper-extremity orthosis that’s straight out of a fanboy’s wet dream. The robotic brace straps on the recipient’s arm from shoulder to fingers. Soft bracelets embedded with sensors are worn on the upper arm and forearm. Like an EMG, they pick up myoelectric signals from the brain that trigger the muscles to contract and move the limb. These signals simultaneously trigger the robot’s motors to move the orthotic in accordance with the desired action. So if Shade wants to extend his arm, that signal is mimicked by the device, which will extend, adding strength to his own arm and allowing him to stretch it out.

Even if the wearer cannot naturally move part of the arm, as long as the brain signal is there, it can be boosted to a level where the orthotic will move it for him/her. For example, Shade cannot move his wrist up and down no matter how much he mentally strains to do so. However, on her laptop, Heather boosted his EMG signal and the robot moved the wrist up and down. Brain power.

Heather demonstrates the MyoPro.

What this means is when Shade straps on his assistive MyoPro robo-brace, he should be able to perform functions with that arm that he’s been unable to do since his second stroke. Things like putting dishes on a high shelf, grabbing a water bottle off a table or petting his precious cat Cheetah. And because he’ll be using his arm more, it will strengthen and loosen up and he may be able to start using his arm more without the device. Plus, I’m shooting for the upgraded version with the laser cannons on it. Pyew, pyew!

What’s more, we’re looking at another device that may help Shade get back on his feet. We’re going to have a fundraiser soon to help with the expense of this device. I’ll tell you about the other device and the upcoming fundraiser in the next blog. Once we get these devices the Shadenator 9000 will be launched.

 

Surgery success

Shade looks like half a chipmunk after a +12-hour muscle and skin graft surgery for his cheek yesterday at Duke University Hospital in Raleigh-Durham. He went in at 7:45 a.m. in the morning and got to the post-op area at 8 p.m. Aitza was at the hospital the whole time, having arrived with Shade on Friday for all his pre-op appointments. They met with Dr. Marcus, the plastic surgeon who had performed the nerve graft surgery on March 31. He was very happy with the progress of the nerve graft after Shade told him he kept having little electrical impulses in his cheek, like mini lightning strikes. They also met with Dr. Phillips, the muscle graft surgeon. Both doctors gave Aitza and Shade a rundown of the upcoming procedure.

Meanwhile I had been working in NYC on an HBO special and planned to get to Raleigh on Sunday morning, the day before the surgery. Being a certified idiot, I decided to hit the Manhattan nightlife Saturday with my buddy Larry, daughter Arianny, son Edwin and soon to be daughter-in-law Michelle (yep, Edwin proposed). The kids were smart and bailed on Larry and me before midnight, but we keep going. Suddenly it’s 5 a.m. at the club (Oh yeah, New York doesn’t sleep!) and we both realized that we had morning flights to catch. We Ubered to the hotel, speed-packed our clothes and Ubered to JFK airport in record time. No rest for the wicked.

Shade’s first snow experience

Larry took off for Seattle and I hung out at my gate for the 8:30 a.m. to RDU. But to my dismay, the weather gods decided to dump 13 inches of snow on Raleigh-Durham that morning, causing a chain of flight cancelations. Meanwhile, Shade and Aitza are having a grand ol’ time making snow angels and throwing snowballs. It was Shade’s first snow experience, so the blizzard was a special pre-surgery gift for him…

…and a kick in the goolies for me. After spending 12 uncomfortable hours at JFK waiting for a flight to open up (nope), I decided to fly back to Orlando, get my head on a pillow for a couple hours, and fly to RDU the next morning. But the snowfall caused a chain reaction of delays, so the next morning, after boarding my 9:40 a.m. flight, my plane sat on the tarmac for 1 1/2 hours, then turned back to the terminal where we disembarked until 2:40 p.m. Then we got back on and sat on the tarmac for another 1 1/2 hours before getting clearance to take off. So I missed seeing Shade before he went in. At least I got to Facetime him beforehand.

The black mark along jawline shows originally planned incision. The red marker shows where the two-inch thick skin graft was placed to cover the muscle.

I arrived two hours before he came out of surgery, and Aitza gave me a breakdown of the progress as per the doctors’ updates. Shade was prepped for surgery and went under at 8:45 a.m. Dr. Marcus and the surgical team made an incision from his right hairline down his sideburn, in front of his ear and down his jaw line. Then they lifted the skin up, exposing the cheek muscle, which has been paralyzed since his first stroke on July 14, 2011. Meanwhile, Dr. Phillips harvested muscle from Shade’s inner right thigh, which was placed on top of the paralyzed cheek muscle. Unfortunately, because the original cheek muscle had lost so much mass, the skin on his cheek had shrunk. So when the doctors attached the new muscle, there wasn’t enough skin to cover the incision area. Consequently, Dr. Marcus had to harvest some extra skin and fat from Shade’s thigh and graft that over the opening. Now there’s a two-inch thick strip of thigh skin stitched down his jaw line, which may make for some strange mutton chops. The last thing the surgeons did was put a little stitch at the corner of his right eye so that it doesn’t droop. This will help him close his eye and keep his tears from running out.

The oxygen level going to the grafted muscle must be over 60%. He’s well over that.

Shade’s cheek is the size of a softball because of massive swelling, which is normal. Inside his cheek is a monitor that measures the oxygen level of the blood going into the muscle. It’s supposed to stay above 60%, but currently Shade has 91% oxygen level, a great sign for healing progress. He has a drainage tube coming out of the cheek to release fluid build up. He’s also enjoying a hydromorphone drip, which he can press every 10 minutes. Perhaps “enjoying” isn’t the right word as he’s dealing with some serious pain in his cheek and thigh. He and Aitza also haven’t slept much since the surgery due to hourly scheduled visits by various nurses throughout the night and day, plus random drop ins from the surgical team, residents, nutritionist, admissions and me. And I was complaining to Aitza about not sleeping for two days after my New York party binge.

The good news is the swelling will reduce dramatically over the next days and then keep reducing for the months of healing to come. Dr. Marcus said that in another 10 months, Shade should have a third surgery to remove much of the grafted thigh skin and clean up the scar so that it’s following his jawline and isn’t visible from the front. In that time, the grafted nerve should have a chance to attach to the muscle and get it moving. Shade has a lot of therapy ahead of him, but by next year he should have a somewhat symmetrical face that can smile on both sides.

Doctors, Diners and Dumps

The line in front of Shade’s ear is where they will make the incision to insert the harvested nerve. the writing says “normal.” The doctor forgot to but “ab” in front of it.

Travel day today. We flew in from Orlando to Raleigh-Durham, departed at 9:30 a.m. I was on standby, but the flight had 30 empty seats so the attendant sat us all together and gave us the seats right behind business class. More legroom. And we boarded first, so no slow shuffle to the back of the plane.

When we got to Alamo and handed our reservation to the attendant, he traded up our economy car for an SUV for free. Said he thought we would need the extra room for the wheelchair. Great guy.

This is one of the benefits of traveling with Shade. People like to upgrade him. Unfortunately, it didn’t work with the hotel. We’re at what Aitza has dubbed the No-Quality Inn. It’s awful. Carpets from 1962. Sagging popcorn ceiling where a previous leak had swelled the stucco. The hallway smells like stewed mildew. The bathroom door is too narrow to allow a wheelchair, so I have to wrestle Shade through the door every time he has to take a whizz. It is better than a motel we once stayed at in Boone, NC, which overlooked an empty pool full of stuffed trash bags, a rusting grill and a foot of green sludge that seemed to have grown tentacles. Suspicious parking lot deals carried on into the wee hours. I believe they had hourly rates. That was the worst hotel we’ve ever suffered through. This is a hair better. But what it lacks in basic living conditions, it makes up for in descriptive storytelling potential.

We had time before our 2:30 p.m. appointment to stop at Elmo’s Diner – a bit of a hometown institution in Durham. Great biscuits and gravy and super-thick chocolate shakes. Shade scarfed down as much food as he could today because he won’t be eating solid food for a while. Fasting tomorrow, liquid diet for a few days, and then soft, mushy food. Savor that bacon cheeseburger, Shadenator!

At our doctor’s appointment, Dr. Marcus walked us through the procedure. After Shade is knocked out, the doc will make two or three small incisions in Shade’s left calf to harvest about 16 to 18 inches of nerve. (The thought makes my sphincter tighten.) He’ll then make an incision along the front of Shade’s left ear and a bit down the jawline. The nerve will be attached to live nerves in this cheek. Then using a very narrow “feeding tube,” he’ll snake the nerve along his upper lip. An incision will be cut at the inside top of his lip to help feed the nerve along. And then they’ll stitch him all up and let the nerve start taking root. The procedure will take about four to five hours.

In nine months, when the nerve has branched out sufficiently, we’ll return for Shade’s follow up surgery – a muscle graft. Dr. Marcus said he’ll wait until then to do his eye brow lift as he’ll be working on the right side. This time the surgery is all left.

We are currently prepping for bedtime. We have to be at the hospital at 9 a.m. We’ll keep you updated during the day on Shade’s Progress Facebook page, and I’ll give you an entire rundown tomorrow night on the blog.

Hero’s Journey

Shade is home after five weeks in multiple hospitals. After a second stroke, and then a third stroke. After multiple sessions of MRIs and MRAs and angiograms. After weeks of intensive therapy at the best damn therapy hospital I’ve witnessed. (We’ve seen a few, and no disrespect to the other fine establishments, but Brooks was extra superduper special with ice cream.)

Shade had gotten in the rhythm of six sessions of therapy daily with an army of occupational, physical, speach, music, and recreational therapists, and their assistants, interns and volunteers helping him through the tough job of getting his left side to wake back up. Not to mention the fantastic doctors, nurses and techs checking up on him and the meal staff taking his order and delivering his three hot meals to his bedside. Shade became a veritable celebrity patient amongst the staff. On his graduation day, when he gave his speech, it was accompanied by laughter and tears from the gathered crowd. Employees kept popping into the room the last day to say goodbye.

And then he was released. Everyone take a deep breath and sigh. It’s all over.

Except for the part where Shade has to get used to living in his house, which he used to be able to navigate easily by scooting, crawling and, most recently, walking. Except now he can’t use his left arm. Despite the great strides he’s made on that side, it’s not enough to help him get down the stairs, even scooting on his bottom. He can’t raise his arm above his shoulder or support himself on a handrail. He can very slowly close his hand, but he cannot maintain even the slightest grip and opening  his hand is extremely difficult. Thus, no picking up anything, even a sock. Forget tying a shoe. His left leg is a bit better than the arm, though it’s still much weaker than it should be. It tends to drag when we assist him with walking and he often rolls the ankle or step on his other foot. He doesn’t have the strength or balance to stand. We’re planning lots of therapies to work on this, but it’s a road that disappears into fog. We don’t know how it will end.

After the first stroke, and the recent second and third strokes, he never complained or questioned the reasons. But the day after Shade and Mami got back home from Brooks, Shade came to the realization of what he’d lost after putting in so much time and effort to recover. For the first time ever, he turned to Mami and said, “Why did this have to happen again?” He didn’t dwell on it, but the thought is now lingering there.

I wonder the same thing. My big brain tells me that this happened by chance. Random mutations in some tucked away DNA strand in the embryo that became Shade. The small flaw in the architecture that blew it up. Like the exhaust port on the Death Star. (The incompetent space engineer that designed that beauty got fired. Literally.)

The part of my brain that believes in the force and elves and the Greek gods and awesome (Adj. inspiring awe) stories wants to blame some invisible sky man or some virulent spirit or a glitch in the Matrix for the barrage of shitty luck that’s plagued Shade. After all, a story is always better with an antagonist. But blame wouldn’t help the situation at hand.

Shade’s at that point in the hero’s journey where he faces the abyss. He’s overcome great odds only to be thrown down hard, his lowest point, where it would be easiest to give up. Like when Luke got his arm lopped off by his daddy (Noooo! That’s not true. That’s impossible!) and then fell into the shaft and hung on with one arm for dear life on the ass end of Cloud City, questioning everything he ever knew and waiting for the worst. Sure, his arm was gone, but it was the damage to his psyche that threatened to make him quit.

Guess who got Luke out of his predicament. His friends. After sending out some force instant messages (Come get me), he got picked up by Leia and Chewie (and Lando, too), and they got him back to working order (with some robotic assistance.) And then he saved the galaxy … for a while.

That’s what Shade needs now. He needs good friends who are willing to spend time with him, exercise with him, play games, or just chill. We’ve got the therapy lined up and the doctor’s appointments scheduled. If you can help with the friendship part, that would help immensely.

(By the way, thanks Cody for coming over today and hanging out and all his friends that Facetimed him in the hospital.)

This Path

Back in my college days, I read a book by Richard Bach entitled “One,” in which the main character encounters alternate paths of his life, all of which were happening simultaneously. To boil it down, it’s Fate meets Chance: the particular life you are living is one of endless lives that have happened and could happen and yet this particular life couldn’t be any different. A choice, a happenstance, a situation is merely a turn down a path that was already there and could be no different because it’s that path. And yet another quite different path could be chosen — or stumbled into or thrust upon — because that path is there, too. Infinite options all laid out.

Alright, maybe that’s a bunch of hippy shit, but it helps me cope with Shade’s recent stroke Saturday, May 28, his second in five years. Aitza, Shade’s blessed mother, the rock of our family, was called from slumber by Shade’s distressed calls last Saturday. He couldn’t move his left side. She dialed 911 and he was rushed to Florida Hospital.

I recieved the call from the other side of the damned continent, The Gorge in Washington, where I was working the Sasquatch Festival. I was shooting a Chet Faker concert for Yahoo, my first time behind the camera at a live music venue, so I was pretty stoked. As I focused in on the singer, I felt my phone vibrating in my pocket. It stopped, and then went off again. And again. And again. I knew something was wrong before I ever pulled the phone from my pocket.

Many already know the circumstances through Aitza’s Facebook posts. (Those posts were all her, by the way. And I think she’s a damned great writer.) For those unaware, the gamma knife surgery he had back in December caused a blister in the pons (brainstem) which burst. It wasn’t a huge bleed like his first stroke, but it did release blood, which caused swelling in the brain and the paralysis on his left side.

Aitza and I discussed what I should do. Despite his injury, Shade’s life wasn’t in immediate danger. And obviously we were going to need the paycheck from this job to pay the ominous mountain of hospital debt now looming once again on the horizon. So we both decided I should stay. It killed me, but it was the best thing. God bless Facetime. I at least got to see and talk to my boy.

Florida Hospital for Children ran tests and monitored him. The bleed area is contained so now it’s a waiting game. Yesterday he arrived at Brooks Rehabilitation in Jacksonville, which is considered one of the top rehab centers in the country. We’ll update you more on that. (To join Shade’s Facebook page click on the column to the right.)

When I finally made it back to Orlando at 6:00 a.m. Wednesday, I drove straight to the hospital to find Shade and Aitza asleep. It was a weird deja vu moment recounting 2011, my family hunkered down once again in the PICU. But this time, I wasn’t afraid. We’d already battled the beast once and crushed it. This pathetic attempt to strike again will face up to the same strength that destroyed it before.

I only had to spend one day in that hospital to know this. Because Shade was cracking jokes and wooing the nurses and trying his damnedest to move those limbs. And yeah, he cried a few times, because there’s genuine loss, near half his body. But he didn’t drown in sorrow. It was more like a quick rain gust that washed over him before the sun poked out. That boy is the strongest person I know. (Mom’s a close second.)

There’s a path in which our family falls apart. There’s a path in which Shade never had a stroke. There’s a path where Shade died. We’re not on any of those paths. We’re on this one, the one where Shade’s healing, and our family is going to love each other and laugh with each other no matter where the path takes us.

Recovery update: Tired

Shade’s friend Cody came over yesterday to hang with him for a bit. They did the regular post-brain-surgery boy stuff. You know, noogies, wrestling, roundhouse kicks to the head. Okay, maybe they just sat in his room and talked. He enjoyed it, but it also wiped him out. By six p.m. he had passed out on the couch.

Today he’s been really feeling the effects of the Gamma Knife rabbit punch to the brain stem. He’s been lethargic and very sensitive to light and noise. He spent all day lying in his brother’s room with the curtains drawn. (Mayan’s room is darker.) He’s also been dealing with a nasty throbbing headache. This might be from the swelling in his brain, or it may be from the four clamps that were screwed into his skull to hold the Gamma Knife helmet in place. (Can’t have a wobbly helmet during brain surgery.) The skin around the clamp areas is very sensitive, and he doesn’t like even a soft pillow touching the areas. Aitza’s had to do some creative pillow arranging so he can rest.

We’re going to keep him out of school for a bit until he’s feeling a bit more energetic and clear headed. He was supposed to have midterms but his noggin couldn’t handle that right now. Just like a high-school boy. He’ll do anything to get out of a test.

 

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