Standing on his own two feet

Wheelchair users are faced with multiple challenges. The most obvious are physical, accessibility being on the forefront of the ADA’s agenda. However, a subtler issue that always bothered me is the social obstacle. Wheelchair users are not at most people’s eye level, which makes a huge difference when conversing. Don’t believe me? Have you ever been standing at a party and started chatting to a person sitting? That conversation doesn’t last long without one of you changing position.

Shade hanging out with family friends

Something as simple as being face to face makes a huge difference in social situations. It’s something I always took for granted until Shade had his stroke. I remember years ago, dropping Shade off early at high school. I parked and sat in my car, watching Shade circle the tight clusters of chatting kids, unsuccessfully trying to insert himself into a conversation. Shade’s wheelchair was too bulky to infiltrate the groups. Even if he did get into the circle, because he was sitting, he was often ignored, not out of malice but because he wasn’t face to face. I sat in the car sobbing, cursing my son’s cruel fate. (Yeah, I’m a big crybaby. You should see me at Pixar movies.) Of course, our close friends who have known Shade for most of his life are aware of Shade and make great efforts to include him in conversations. But think of all the everyday situations where people look right over him. And Shade is a friendly dude, not shy at all. I can’t imagine how tough this might be for a person who isn’t as outgoing as him.

Shade has leg strength.

The thing is, Shade can stand. His true issue isn’t leg strength; it’s balance. He tends to topple, especially if he tries to lift a leg to walk. Thus, for safety issues, he’s been relegated to a wheelchair. Shade can stand if he has handles to hold or a counter to lean against, but it’s only for short bouts, for example, to put a cup away or clean his teeth. He can walk, too, but only when assisted by another, and even then balance becomes an issue with each step for both himself and the assistant trying to keep him upright. You can imagine the ordeal this causes Aitza, who is hobbit-sized.

We’ve tried walkers but they’re too dangerous for him. Walkers are held out in front of the body. This causes the user to bend forward, throwing all the weight forward and using the device as an unstable prop. A walker is liable to shoot out from under the stooped-over ambulator, leaving the poor soul splayed out on the sidewalk and hoping the crack he heard wasn’t a hip. Consequently, we’ve never allowed Shade to use a walker alone and have all but tossed them.

The LifeGlider

Recently Shade’s uncle Edwin (Tio Loco) discovered a new device called the LifeGlider. Like a walker, the LifeGlider is an ambulatory assistive device, but it is designed to support the body’s center of gravity so that the user can stand upright. That means hands-free walking … real walking like the body was meant to do.

The LifeGlider has restored my confidence in assistive walking devices. One video on the website shows a user transitioning from a walk to a full Superman­ – legs off the ground, arms splayed out front – and then effortlessly swinging his feet back on the ground. With this kind of balance support, Shade may be able to start walking around the house again. This will help strengthen his legs and give him more confidence in his own balance. Given enough practice, perhaps he could use it at work or in social situations. Who knows what other opportunities might open up if he could stand on his own two feet again?

Like I mentioned in the last blog, we will soon be fundraising for this device and the MyoPro robotic arm (now with flame throwers). Keep your eyes open for the upcoming news.

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.

 

How to freeze time

All you would-be wizards, mad scientists and time lords, get your notebooks out. I’ve discovered the secret to freezing time. First, get a hotel on the outskirts of Durham near nothing worth visiting. Second, make sure you do not have a car so that any journey away from said hotel is a bit of a hassle, thus inducing you to stay put. Third, in your room, draw those thick curtains that block out all sunlight. Fourth, have plenty of snacks and drinks stockpiled in your mini-fridge. Fifth, make sure you share the room with someone that needs a lot of bed rest. If you manage to maintain these five steps for an extended period, time itself will grind to a halt. Night and day will cease to exist. Presumably, if you can keep this going, you will not age though you may feel like you’re a thousand years old. Side effects may include a trance-like state involving sitting on the edge of your bed and watching 1990s reruns with repetitive insurance commercials and/or a desire to smother yourself to death with hotel pillows.

Of course, for Shade, the hotel stay was a welcome respite from the noisy, smelly, glaring confines of the hospital ward. He basically hibernated for three days while his face healed. His cheek has swollen up a bit, which was expected. Mr. Chipmunk hasn’t quite released his grip. But Shade has experienced little to no pain. He doesn’t even take pain pills. IMG_5333Meanwhile, I’m popping Ibuprofens like candy because I was foolish enough to break my hand a week back while in Denver. (Long story short: Some malevolent no-good-nik attacked my fist with his nose.) I’ve been hunched over the keyboard two-finger typing these updates like a stereotypical beat cop writing up the day’s arrest reports. Please forgive any typos.

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Shade’s first meal out

The day Shade was released from the hospital, Dr. Phillips referred us to Kathryn Walker, a smile therapist. (Just when you thought there were no new job titles left!) She works with patients who have facial procedures or suffer setbacks in facial operation to help them get back their smile. We weren’t there long as Shade couldn’t perform the therapy yet. He needs a couple months of healing first. But Kathryn did give us a list of smile-building exercises, which I have deemed “yummy therapy.” To strengthen the right side of his face, she suggested chewing Bubbalicous bubble gum on that side. Aitza recommended watermelon flavor though I’m a traditionalist and believe he’d get better results with bubble-gum flavored bubble gum. (Perhaps I’m just boring. The other evening, I walked down to Cookout, a local burger joint that offers 40 flavors of shake. I panicked at the overwhelming selection and just got vanilla.) Another therapy involves moving a lollipop from one side of his mouth to the other, starting with a big BlowPop and working his way down to a tiny Dum-Dum. To me, however, that sounds counterintuitive. No one wants to graduate from BlowPops to Dum-Dums. You learn that during your very first Halloween candy-trading session.

IMG_5284After an eternity at the Hilton, we’re finally heading home. (I’m writing this on the plane.) We stopped by Dr. Phillips’ office first and he gave Shade a quick examination and took photos for before/after comparisons. The swelling is causing a bit of eye droop, but the doc says after the swelling subsides, he expects Shade’s face to be almost symmetrical. Next, step: Getting a symmetrical smile. Bring on the lollipops!

 

The Lost Island of Atlantis

“And in a single day and night … the island of Atlantis in like manner disappeared in the depths of the sea.” That was the ancient philosopher Plato’s description of Shade’s recent facial reanimation procedure, during which Dr. Marcus and Dr. Phillips removed excess fat and skin from the right side of Shade’s face. Skin Island has vanished, much to the chagrin of the tiny monkey’s living in the curly coconut trees thereabouts. Its whereabouts have become the grist of speculation, superstition and legend.

58309199613__69741F8A-42AF-4DFA-8F3F-3510EE4CA848In other words, Shade’s surgery was a complete success. Dr. Phillips explained that they did not have to touch any muscle in the process; the excess skin from the graft was completely removed; his natural cheek skin was stretched over the muscle and glued down with a biological glue; and Shade was left with a single thin scar along his jawline. Presumably, once the swelling reduces (Mr. Chipmunk still has a bit of a grip), his scar will be barely noticeable.

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So symmetrical!

The surgery was quite short – two and a half hours total – a breeze compared to his last procedure, which was ten hours. Upon his waking, I took a picture of him from the front and his face is nearly symmetrical. I showed the pic to Shade, who in his post-anesthetic delirium, slurred, “I look like a fucking super-model.” Yes, you do, Shade. Yes, you do.

 

Unfortunately, the hospital was packed so there were no private rooms available and Shade and Aitza had to spend the night in a post-op ward with only one of those thin shower-curtain dealies to block out light and noise. Little use with those glaring florescent hospital bulbs and the grown man next door sobbing uncontrollably. (Not sure why, but he did all night.) Double the problem that the cubicle was right next to the nurse’s station and the bathroom, so they had the pleasure of listening to the night shift cackling, giggling and flushing overflowing urine jugs all through the wee hours. As if to taunt Shade and Aitza, the computer monitor in the room kept flashing a screensaver with a kid doing the international “Shh” sign with his finger and a message saying: “Please keep it quiet while healing is happening.” Yeah, right.

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Oreos make it all worth it.

When I returned to the hospital this morning, Shade and Aitza had the bloodshot thousand-yard stares of combat survivors. But they’re war veterans by now and shook it off quickly, especially after I brought Shade some Oreos. After all, it was time to leave the battlefield and return to the soft, quiet beds of the Hilton, where Shade is now snuffling gently amongst a pile of fluffy pillows. The next few days will be devoted to rest and recovery until his final appointment on Friday and then home.

 

 

Goodbye Mr. Chipmunk

IMG_0023Shade, Aitza and I are back in the lovely township of Durham, NC, for Shade’s final (hopefully) procedure at Duke University Hospital. We flew up yesterday (My third day in a row in an airport. Oh, the glorious world of travel.) and got upgraded to Comfort, which means our legs were not folded up under our chins for the 1.5-hour flight. This is the Shade advantage. People like to give him stuff. He said he wants to monetize this situation by selling wheelchairs outside the airport but I explained that then the pre-boarding line for people with disabilities would have 200 people in it, so it would backfire on him. I like his entrepreneurial spirit though, however misplaced.

For those new to Shade’s medical journey, a recap: After 12-year-old Shade suffered a debilitating stroke on July 14, 2011, he had right-side facial paralysis (among many other traumatic issues), leaving him with half a smile, an eye that wouldn’t fully close, and some serious lip and cheek chewing. Imagine the feeling when a dentist has numbed your face for dental surgery, but it lasts for the rest of your life.  With no movement, his IMG_6447muscle deteriorated to the point that his cheek was flat. After much research, I found Dr. Marcus, the nerve/muscle graft guru known here as the Smile Doctor, whose specialty is facial reanimation, bringing back life to paralyzed faces. So last year he took a nerve from Shade’s leg and grafted it from his left cheek across his upper lip to his right cheek like an extension cord. He let that get cozy for 6 months and then last December grafted muscle from his thigh into his cheek. Because the skin on his cheek had tightened so much, Dr. Phillips, his plastic surgeon, had to add skin from his thigh as well to cover the extra muscle and fat added underneath. I just found out the graft area is known as the skin island, well named as the pale thigh skin seems to float in a sea of his ruddy facial skin.  I guess that makes the weird thigh hairs growing on this island the coconut trees. He ended up with what Shade deemed “a chipmunk cheek.” Between that and the scars and the skin island, he got his share of stares, but Shade is impervious to stares. It’s one of his super powers.

We checked in this morning to the hospital, and both Dr. Marcus and Dr. Phillips visited. They were all grins at Shade’s grin, which is getting more symmetrical as the right side of his face wakes up. Dr. Marcus was happy when Shade said he gets pins a needles in his face, another great sign of the new nerve and muscle coming to life, and he was pleased with Shade’s nasolabial fold, your vocabulary term of the day. That’s the groove on each side of your nose that go to the corners of your lip, which deepen as you smile. Shade hasn’t had one on his right side for years.

IMG_3913The doctors consulted with us about this procedure, which thankfully will be much less invasive. (The last one took months of healing including multiple stays in the hospital over Christmas.)  Dr. Marcus’s plan is to debulk the area under the skin. I guess the last procedure was the bulking part. They put extra fatty tissue under the cheek to ensure he’d have enough matter underneath, after the swelling subsided, to make the sides symmetrical. Had I known this term, his cheek would have been nicknamed the Incredible Bulk. Oh well, missed opportunities.

Dr. Phillips will next remove the skin island, or at least as much as possible. The grafted skin over the site is quite loose, and he said he’ll trim it little by little until the area is covered properly. At worst, Shade may have a small strip of grafted skin along his jaw line. We’re hoping for full removal because that patch is hell to shave.

Shade went into surgery at 11:08 a.m. I’ll update you, post-chipmunk removal.

 

 

 

How do we return this present?

Home for Christmas

Red and green are quite merry when decorating for Christmas but are less festive when dealing with wound infections in a hospital ER. How’s that for a holiday card message? It was inspired by our Christmas visit to Health Central hospital over the last couple days. Harken whilst I recount to you this Christmas tale:

‘Twas the day before Christmas, and all through the house,
Not a creature was worried, not even my spouse.
The invites to family had all been sent out
For the annual Christmas Eve Crampton cook out.

Low Country Boil

Alright, I won’t make you suffer through ten stanzas of corny holiday poetry. Suffice it to say, after returning from Raleigh on December 18, Shade had been taking it easy in his bed and healing. His scars looked pretty good for scars – nice, clean lines and no redness or swelling. Things seemed positive on the whole, so we decided to carry on with our tradition of Christmas Eve dinner, despite urgings and offerings from good-intentioned family that perhaps we should skip it or allow someone else to host. After all, preparing a big meal was a bit much to add onto our plate. However, after spending most of December away from home and engaging in very little Christmasy activities, we felt that this dinner was our only chance at capturing the real spirit of the holiday. But we simplified. Instead of the big roast dinner, decorated table and place settings, we opted for a fairly easy low country boil – a big boiling pot of crabs, shrimp, sausages, potatoes, corn on the cob and spices laid out over a picnic table. My brother Darren would handle all the fixings. Cooking time, less than 30 minutes. Dinner’s on!

(If you are easily grossed out, I suggest you do not eat any pudding while you continue reading.) During the days before Christmas Eve, Shade’s face started leaking fluid. More like gushing. He woke up one morning with a soaked pillow. But the fluid was clearish and didn’t smell, which was good news. We contacted the doctors at Duke and they said that the area was just trying to eliminate the swelling. They weren’t worried so neither were we, though it was a chore to keep the area dry and clean. They should have installed a spigot on his cheek.

On Christmas Eve morning, however, the stitching on his lower cheek had opened up and it was a bit gooey with pus. Blech! So Aitza took Shade to his primary care physician whose office is at Health Central. The doctor took one look and said, “This is way beyond my expertise!” and promptly sent Shade down to the ER. Crap! Back in the hospital. I drove down and met them. The staff were great and tried to make us all welcome and comfortable, but we still had that Grinch-stole-our-Christmas gloom. The staff pumped up Shade full of fluids and antibiotics, took cultures and blood samples, and said he may have to stay overnight. So much for our big dinner. We resigned ourselves to Christmas in the hospital and called up the family to give them the news. But after the culture results all came back green, the doctor said we could take him home with oral antibiotics. We left the hospital at 2 p.m. and called up the fam. Christmas Eve dinner was back on. We supped well that night with our extended family. We opened presents on Christmas morning as custom dictates. We drank merrily and played games with friends that evening, celebrating the blessing of having Shade home for the day.

The ER doctors had asked us to return two days later for a follow up. So yesterday, (Boxing Day for all you Brits who continue the celebration), I took Shade to the ER, assuming that we’d pop in and out in an hour. A member of the on-site plastic surgery team had a gander at his face and said it was looking fairly good, though the patch of stitching where the fluid was leaking had opened up a bit more, which concerned him a bit. Then the doc took the gauze off his leg scar. The site was swollen, hard and flaming red with purple bruising and it was leaking bloody fluid. Uh oh! Not the present you want to unwrap at Christmas. The intense swelling was quite shocking, as Aitza had cleaned and wrapped the leg the night before and it had appeared fine. One look at his leg and the doctor ordered Shade to stay for 48 hours of antibiotics and observation. Yay! Back in the hospital! So much for popping in and out.

Shade was hooked up to more plastic bags of fun juice. The doc sealed the wounds on his face with silver nitrate, which chemically cauterized the opening to prevent more leakage. Then he opened up a patch of Shade’s leg scar to release the swelling. It was mostly blood. No pus. (So we had the Christmas red but not the green, thank ol’ St. Nick.) The doc’s theory was that perhaps there had been a pocket of blood that ruptured and filled up the area, causing the swelling and bruising. (That morning he had had his first home physical therapy session and perhaps that had caused the rupture.) At around 5 p.m., Shade was admitted upstairs. His face, neck and chest were as red as an embarrassed tomato. Turns out he has a hypersensitivity to the antibiotic Vancomycin, which causes “red man syndrome.” (Don’t get all worked up, ultra-liberal hysteria hounds. It’s not a slur; it’s a description.) They replaced the antibiotic with another and he’s back to his normal color, cracker white. (Okay, now you can be insulted.)

“What a fun Christmas!”

Aitza, who had been working all this time and stressing as mothers do, finally got to the hospital at 7 p.m. and took up the night shift. At least Health Central has had a fantastic make over, and Aitza was able to sleep on a pull out sofa, not another recliner chair like at Duke Hospital. I returned this morning and Shade seems fine. No pain or irritation. He did have a lot of blood leakage from his leg, but that’s good as it releases the pressure. One more day of observation and if all is well, perhaps we’ll be clear of hospitals until his next surgery in six months. I think perhaps the Cramptons should get a holiday redo. What do you think? Christmas in January?

Let the healing commence!

Ah, home. No place like it, especially when you’ve been stuck in a tiny hospital room for over a week – after having your face sliced open and stuffed like a Christmas stocking with other parts of your body – being poked, prodded and probed every 10 minutes by doctors, nurses, med techs and elves, the latter a product of hardcore hallucinations from prescription opioids and sleep deprivation. I’m either describing a miraculous surgery or the plot to a serial killer movie.

Winner of the Bubble Yum bubble gum chewing competition

When last I wrote, Shade had just come out of surgery. Both Aitza and I were not prepared for the sight of our child’s face. The doctors had talked about swelling but the size shocked us. And the skin graft was also something unexpected. The surgeons came to the conclusion during the surgery that the skin was too tight and needed extra skin so they made the necessary decision to add skin. So when we saw the two-inch jagged strip of pale thigh skin down his face, we were both stunned. We fully understood the reasoning; we just were not prepared for the dramatic change in his features. Both of us questioned our choice to put Shade through this procedure. Was all this pain and deformation worth the end goal of Shade having a symmetrical working face? Was his situation so bad before that we needed to subject him to such pain and suffering? I mean, we’re making decisions for Shade, and he’s trusting us to make the right ones, but how can we truly know if it’s the right choice until afterward?

Such thoughts can drive a parent into a spiral of severe gloom because unless you’re clairvoyant, you don’t know what the end results will be for any choice you make. And after you’ve made the choice, you have to deal with the consequences if it turns out to be the wrong choice. Back in December 2015, when we chose for Shade to have a second gamma knife operation to prevent him from having a second stroke. We took the risk based upon the information we received. The result of that operation was that six months afterward, Shade had a second stroke from a burst blood blister formed by the operation. It completely debilitated his left side. All the progress he had made was lost. In fact, he was worse off than after his initial stroke.

So watching our son suffer from his latest post-surgery pain messed with our minds because we chose to put him through this. I feel for Aitza especially because she never left his side. She “slept” in a recliner chair by Shade’s bed every day and was with him through all his agony and hallucinations and despondency. She was with him when he became so severely depressed that he said none of his friends would ever want to see him again because he was deformed and he wished he was dead. She held strong through all those heart-breaking moments.

Shade shows how to work a jaw muscle.

Just to set you at ease, Shade is no longer depressed. We think the heavy drugs caused much of that. After he hallucinated about an old lady trapped under a car inside his hospital room, Shade himself chose to go off the drugs and manage the pain with just Tylenol. He lightened up afterward and was even able to laugh about his massive cheek. After all it’s so big, if he walked into a bubblegum chewing competition, the other competitors would take one look and swallow their gum. Chipmunks see him go by and carve statues to their new god, Cheekzilla, he who holds infinite acorns.

The doctors were happy about Shade’s healing and he and Aitza were finally released from the hospital and got to sleep all day and night in a hotel. The doctors had first said that Shade could only have liquids for a month, but they changed their minds and said he could have soft foods. Soft foods? Bah! After I flew back to Raleigh on Sunday, I got him some smothered chicken from Texas Roadhouse and he scarfed it up. He’s got a super cheek now. He could chew cinderblocks.

Hanging with the Clauses

Yesterday we had a last visit with Dr. Phillips the plastic surgeon. He reiterated that the swelling will subside over time. He also stated that there’s excess muscle, fat and skin in there which can be chipped away at a later surgery to produce a symmetrical visage, much like a sculptor might remove excess marble to create a masterpiece. He was very positive about the final results, which eased our stress.

As we were leaving Duke Hospital through the Children’s Center, the staff had set up a Christmas area with carolers, a Santa and Mrs. Claus, and cake and toys for kids. Shade got a picture with the Clauses. Then one of the happy elves gave Shade a stuffed bear and a gift card for Target. It was our first real Christmas moment this year and I cried like it was a Pixar movie.

 

Flight home

By 8 p.m. that night, we had hopped on a plane and made it home to Orlando, where Mayan was waiting to see his big brother. Shade got visits from Abuelita and Bubu (Aitza’s parents) and Uncle Darren late night and from Dadabob (my dad) this morning. And now I sit by his bed writing this while Shade scarfs up scrambled eggs and heals. The future will show if our decision this time was the right one, but now that the pain has subsided and Shade’s surrounded by family at home, we can at least be happy that the stress of the hospital experience is over for a while, enjoy the holiday spirit and focus on Shade’s progress.

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