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.

Past Progress and Next News

It’s been since last  April that I last posted in Shade’s Progress, when he had his nerve graft surgery at Duke University Hospital. Just a reminder, they yanked a wire out of his calf and threaded it from his left ear to his right so that his cheek could get some spark back. The following up surgery is coming up. I’ll tell you about it down there.

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Florida ID

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Registering to vote

First, let’s update. Shade got a Florida ID (not for driving. Trust me, you don’t want him behind the wheel. He drives his electric wheelchair like Mad Max.) and then he got his voter registration card. Civic duty awaited and our son got to experience for the first time that dirty feeling you get for voting for the least despicable candidates. Shade’s still serving up good will at The Simpsons Restaurant, meeting folks from all over the globe and local friends, like our Indian Guides buddies Chad Adams and Bill Ellenback, who work out there. If you go out there, stop by.

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Shade also traveled with his two brothers, Mayan and Edwin, his Tio Loco and Tia Gigi and Mami to England, where Shade got to enjoy a legal pint of beer. Shade’s a world traveler. Shade’s also been fully immersed in the Pokemon universe as is Mami and they’re constantly grabbing mythical creatures out of the neighborhood. It’s not rare to be caught in a car conversation that involves a Squirtle, Snorlax and Lickitung. If you have a Charmander prowling your neighborhood, call Shade. He’ll take care of it.

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Finally, Shade has grown out his hair for a couple years and he recently got it trimmed off so he could donate it to cancer patients who need wigs with real hair. He’s sending silky locks to Locks of Love. Now if I can only get Aitza to get the decapitated pony tail out of the napkin holder on the dinner table and into a postal envelope… (I’m going to get hell for this crack.)

So now to next news. Shade healed up nicely after the last surgery, and has been feeling a lot of twitching in his face. Now comes Step 2. We’re heading back to DukeU Hospital for Facial Reanimation. Sounds like a movie. “Shadenator is back and he’s mad as hell!” What this boils down to is Shade’s muscle graft surgery. They’re going to take a muscle out of his thigh (not a whole muscle but a strand so it shouldn’t affect his leg strength. Then they’re going to go in under the skin of his right cheek and graft in the muscle where the nerves have already spread out they’re electric tendrils. Over time and with physical therapy, the nerves will splice with the muscle and soon he should be moving his cheek and mouth where previously it’s been paralyzed. Basically Shade will get his smile back. At least on one side. His other side already had a beautiful crooked smile which he uses constantly. (DukeU Hospital’s site will show you more details if you’re interested.) Oh, and during the surgery, they plan to put a stitch on the corner of his eye to lift the lower lid. That way he can close his eye a little more and the tears won’t be so ready to run out and dry out his eye.

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Shade taking the Lynx Access shuttle to work.

The surgery is scheduled for December 10. Aitza will fly up to Raleigh on the 7th and I’ll join them on the 9th, flying from New York, where I’m working the Two Dope Queens show at Kings Theater in Flatbush. Flatbush is a trendy spot in Brooklyn, for all you folk that haven’t explored the area. Brooklyn is a place in New York, for all you Florida folk who never left the state, or at least the South. I’ll keep you posted as details emerge.

 

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.)

Walk this way

Mayan and Aitza are galavanting in Manchester, England. This was Mayan’s birthday present from us in November, and Mayan saved up his Christmas money to spend over there. They are windowshopping and seeing the sites. Then tomorrow they will see a Manchester City game. (Proper football, not the American kind where they hardly use their feet.)

Meanwhile, Shade and I have been abandoned at the house. (I said that just to tick off Aitza.) So we decided to have our own adventure … right down the street. Shade walked the entire length of our street without crutches or walker, while I helped him balance by keeping my hands on his shoulders. That helps steady him so he can focus on his pacing and speed. When we saw something interesting, we stopped to check it out. Here are some of the fun, weird things we experienced.

Emergency cut short

Emergency cut short

A few driveways down was an abandoned Matchbox firetruck. Perhaps it ran out of gas on the way to the fire or got bogged down in the storm that hit us this morning. We believe the driver hitchhiked back to the station because there were tiny footprints leading to the street.

Welcome to the funhouse.

Welcome to the funhouse.

We came to the realization that all cars are funhouse mirrors. The reflections are not slimming. We don’t suggest looking at a reflective car door if you are attempting a New Years resolution diet.

Yuletide detritus

Yuletide detritus

Dry brown Christmas trees have popped up the last couple weeks on the curb. But there are still a few houses in the neighborhood that are decorated with Christmas cheer. (Last year, we kept our decorations up into February.) One house, however, got all the stuff down and then got called away on some emergency. (Perhaps mom looked at her reflection in the car door and now has to be talked down from a ledge.)  So Frosty, Santa, Tigger and Pooh are chilling out in the driveway, along with piles of lights and other assorted festive accoutrements.

Wood you hole this for me?

Wood you hole this for me?

Shade found a piece of wood with the knothole knocked out. Legend says, if you look through the knothole, you can see the invisible street gnomes. This can be disturbing because invisible street gnomes are notorious for not wearing pants. That didn’t stop Shade from staring through it for five minutes.

Shade shows you a trick.

Shade shows you a trick.

There’s no shopping on our street. (Plenty of looting, but no shopping.) But occasionally you can get a street score. Shade found a cool, reflective sticker on the ground to put on his desk. Woo hoo, free stuff!

Not quite an overseas adventure, but it was an interesting promenade, and the longest walk Shade has done in ages. Shade was exhausted afterward. Lately we’ve been trying to get away from those walking assists like crutches and trying to work on proper walking stature like tightening his core, keeping his shoulders back, and moving his arms so that they swing counter to his legs. When he really focuses, he is able to walk by himself for 10 or more steps. Today he did 16 on the sidewalk. If Shade keeps this up, he may just walk to school one morning.

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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