Short and sweet update

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Shade gives a thumbs up after surgery.

The surgery was a success. After five hours of waiting, Dr. Marcus came out all smiles and said it couldn’t have gone better. The first half of the surgery involved pulling a nerve out of his calf. The second half was inserting it in his face. Shade had three very nice thick nerves in his left cheek from which to choose. Dr. Marcus picked the largest one and grafted the harvested nerve to this. Then he snaked it under Shade’s nose to the other side. When we finally were allowed in to see him around 6:30 p.m., he was still knocked out. He didn’t fully awaken for another two hours, though at one point in his daze, he did mumble that “Dad was f-ing annoying.” No big secret there. Around 9 p.m., they moved him to his own room on the sixth floor and was finally able to drink an apple juice and watch American Ninja Warrior.

Shade has felt no pain so far, despite having his calf, cheek and lip sliced and stitched. However, he did keep thinking he had wet himself.  He’s got a catheter and he was feeling the sensation of eliminating. We’d tell him he was fine, that it was all going in a tube to a bag, and that he was all dry. But thanks to a combo of his anethesia and his short term memory loss, he’d quickly forget and say again, “Oh man, I think I peed myself.” This will be a constant loop until the tube is removed.

Good news. My cousin Craig read about our cruddy hotel situation and cashed in some Marriott points to get us a room at the nearby Courtyard, which in comparison is like Downton Abbey. Thanks Craig. Aitza is sleeping on the recliner couch in the hospital room with Shade because she’s mom and that’s what moms do. If all goes well, Shade can leave the hospital and they can stay in the hotel room tomorrow.

I’m keeping this one short because it’s time for bed. More tomorrow.

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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.

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.

Shade’s Employed!

Shade signs the paperwork to become a Universal Employee.

On July 14, 2017, on the 6th anniversary of Shade’s stroke, and just a month plus after graduation, Shade signed the papers to make him an official Universal employee. Orientation starts next week, and then he’s knee deep in Lard Lad donuts. Actually, he’ll be on restaurant row in The Simpsons land … or island … or whatever creative term they use to name the area.

Here’s a Shade fact: When he was kicking on Aitza’s cervix in the hospital, I said to Aitza, “You better hurry and get him out of there because the Simpsons is coming on at 6:00.” Sometimes I’m a jerk. Just sometimes. Well, Aitza complied and squeezed out a feta-covered Gollum fetus that we called Shade, and after he’d been spanked and shaken and given the rough towel treatment, we were back in the recovery room. Aitza was sipping a Guinness. Daddy was gulping it and holding Shade in his arms, and he grabbed the remote and turned on the TV and low and behold, right there on the screen was The Simpsons opening sequence. And Shade’s crystal eyes gazed upon it. And it was good. (Cue angel song!)

He also climbs trees! What can’t he do?

18+ years later, he’s come full circle. He’ll be a greeter in the Simpson restaurants. (Editor friends, I know I started a sentence, let alone a paragraph, with a numeral. Forgive my blogging.) Shade’s got potential to acquire new skills and meet new friends and learn what he’s capable of. Stay tuned …

Double graduation

Good news. Shade had two graduations within a week. Last Friday, he walked on stage to receive his high school diploma at Central Florida Prep, one of the most beautiful graduation ceremonies we’ve ever seen. With a graduating class of six students, each student was highlighted in words and pictures. A truly touching event.

Then this Wednesday, Shade graduated from neurosurgery. In other words, his angiograms show that his AVM is completely gone. Dr. Trumble said that he now has a normal brain. Well, as normal as a Crampton brain can be.

Shade has been working hard to regain his lost progress after the latest stroke nearly a year ago, last May 28. We often go to Planet Fitness, where he uses the weight machines to build up muscle in his left arm and leg. He’s also getting regular PT, OT and ST. Plus, our good friend Danny has helped him do this:

It’s a little blurry, probably because Shade keeps melted Tootsie Rolls in the same pocket as his phone, but you get the picture. Next step, walking.

“Made in the Shade” Game Night

Shade in shades

Join Shade Crampton for “MADE IN THE SHADE” GAME NIGHT

What: Made in the Shade Game Night
When: Monday at 7 p.m. Schedule will be posted on http://shadesprogress.com
Location: Quest Church, 1450 Citrus Oaks Ave, Gotha, FL 34734
Second floor of main church building in the lunchroom.
There’s plenty of parking next to the church.

“Made in the Shade” Game Night is open to anyone tween and up who likes games: high schoolers, middle schoolers, adults, 500-year-old vampires, intelligent alien life forms, bigfoot. As long as you like to play, you can come. Feel free to bring your own games, too. We can play in big groups and in small groups or just one on one.

We also want to encourage folks with disabilities to come play with us. This night is especially for you to meet other like-minded people and have a little fun. If you know someone with a disability that might enjoy this night, bring them along.

What kind of games will we play? Board games, Minute to Win It games, card games, guessing games, mind games, drawing games, strategy games, goofy games, roll playing games, dice games, you name it. Shade wants to play all sorts of games and he wants you to play them with him. (Okay, we won’t be playing video games because we can’t afford to buy 20 Xboxes. Plus, we want to interact like social humans.)

We will put a donation jar out each week. If you feel like donating a little money, we’ll use that to buy different games for future weeks. No pressure though.

Email Vcrampton@gmail.com for more information.
Or check http://shadesprogress.com for schedule.

About Shade Crampton: Shade suffered a stroke in 2001 at the age of 12 and a couple more in 2016 at the age of 17. He uses a wheelchair to get around. He has memory and processing issues and has trouble using his left arm and standing. But he’s a smart, hilarious, down-to-earth teen, who won’t let something as trivial as a debilitating stroke get in the way of his fun. He’s a whiz at backgammon and he knows every single Pokemon on the planet. He wanted to start this game night so other people, with and without disabilities, can socialize and have fun. Come out and join us.

Read more about Shade’s battle and triumphs at http://shadesprogress.com

Changes

“So I turned myself to face me
But I’ve never caught a glimpse
Of how the others must see the faker
I’m much too fast to take that test” — Changes, David Bowie

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Shade at Christmas. The glove helps straighten out his hand so it’s not in a fist all day. 

It’s been seven months since my last post and almost nine months since Shade’s big stroke at the end of last May. Before that, Shade was relearning to walk after five years of recovering from his first stroke and he was doing well. He could do over 100 walking steps by himself. He could get himself anywhere he needed with his hands, whether scooting across the floor or pushing his wheelchair. He could lift himself to the counter and stand to brush his teeth or put dishes away.

Here’s recap of what that stroke in May did to Shade: It stole all he’d accomplished from him.

I’d just like to point out that I said that last line without using the foulest of profanity or cursing every diety that was ever conceived by man, which is how I normally express the situation. So that’s a step in the right direction, right?

Shade still has paralysis on his left side. Not total paralysis. He has limited mobility in his arm, though it’s tough to control. He can’t fully extend it or straighten it over his head without help from someone. Sometimes he will try with all his might to open his hand, but it will stay squeezed in a fist. Other times he want’s to grab something and his hand won’t close. His brain works against his will. He can’t hold anything heavier than an empty water bottle, which has really put a dent in his Shake Weight workouts. He can’t move his wheelchair wheel on the left side. But sometimes he can grip small things. Sometimes he can reach out a little. That means it’s working some. It’s just at 3% of optimum ability.

He gets occupational, physical and speech therapy weekly, though they work more on helping him adapt to his situation instead of trying to overcome the limitations. Our friend Danny, however, comes over weekly and works him hard to expand his abilities. Danny makes it real, as if Shade were training for a sports team. He cuts Shade no slack.  He even smack talks with Shade, which Shade loves. Danny is the ultimate blessing because he foresees progress where others don’t. Everyone else says, “Who knows? Maybe; maybe not.” Truthfully, no one else has the balls to say there may be progress because of the litigious nature of our society. Doctors aren’t going to put themselves at risk for malpractice by giving a patient hope. Because hope is unknown. It’s fleeting. Understandable. If I was a doctor, I’d probably do the same.

The last stroke certainly did him no favors socially. Now he can’t even roll around to socialize amongst the students at his school, Central Florida Prep. He’s reliant on others to get him from place to place. He’s got buddies there that will roll him to and from class, and they all treat Shade kindly and hang with after school until I pick him up. And the teachers are lovely and protective of Shade and bend over backward to help us. Recently Shade even became Vice President of the school’s anime club, which is fantastic for him because it means he’s valued.

But once home, he’s pretty much alone, except for us family. Occasionally on weekends he hangs with his camping buddies, but it’s usually because I’m going to their house, too. He doesn’t have sleepovers like before. Plus, the friends his age are now all driving and going out on dates and having dual enrollment. They’re getting accepted to colleges, and holding down part-time jobs and prepping for their next big move in life. They’re busy. Picking up Shade to go out is maybe a hassle … because of the wheelchair, I’m guessing. Or awkwardness in social situations, perhaps. Or … I don’t know. I’m making assumptions on observations. Could be anything.

Get this. Because of his paralyzed left side, Shade’s one real social outlet that he had left, online video gaming, was stolen from him by that fucking stroke. Curse the gods! (Sorry, I couldn’t hold it anymore. But I’m good now. It’s like a steam whistle. You gotta let it blow occasionally to let off pressure.)

Shade does have one friend who has amazed us. His name is Nick. He lives in our neighborhood and he visits on a regular basis. Not because we ask him. Not because he feels a need to do a good deed. He just shows up to hang with Shade, one on one, because he has fun with Shade. They talk Pokemon and anime and video games. He walks Shade up to Walmart and Game Stop to shop. He has no problem just sitting on the couch with Shade for hours, sometimes not even talking. He even crashes on our couch sometimes after school, which is foolish because Shade will find anything in the cupboard and put it on Nick’s reclining body, so when he wakes up, he’s covered in bananas or Legos or anything handy and uncomfortable. Nick is another great blessing. He doesn’t even know how much we appreciate him because, for one, he doesn’t read this blog, and two, we don’t want to turn it into a weird thing. You know, “Thanks for hanging with our stroke victim. Are you doing it for community service or did your church put you up to this?” No, he’s just a kid that likes Shade for Shade’s sake. But eventually Nick will go off to college. I’m not looking forward to that day, though it will be a great day for Nick.

And I’m not saying others don’t like Shade for Shade’s sake. They do. Others just don’t hang out with him like Nick. Others don’t call Shade out of the blue on a weekday and say, “Let’s chill for an hour.” And for every kid like Shade, there are millions of others in the exact same situation. A disabled life is challenging physically, but it’s not even close to the challenge for that person’s spirit. To suddenly be seen lesser not just in abilities, but in social worth. That’s crushing.

Don’t believe me? How many close disabled friends do you have? I’m guilty. Sure I have disabled friends. I’ve been inspired by those same people. I’ve even written articles about amazing people that I consider friends. But did I really take the effort to develop that relationship? Did I call them out of the blue for coffee or to play a game of backgammon or just to chill on the couch? Did I make the effort to be a true friend for friend’s sake. No. I point the finger at myself, a hypocrite of the highest order. Because when I see my son’s distress and loneliness, I can only think, “How can I expect others to step up to real friendship with my son when I haven’t even done it myself for others?”

Time to make a change.

 

 

 

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