Round Peg (27), Tuffy (husband 29), Needlenoggin (brother 24), Rorysaurus (daughter, 5) and Little Monkey (son, 3) live together in Portland, Oregon. This chronicles their health (mis)adventures, especially Little Monkey and Needlenoggin.
Saturday, October 27, 2012
Thank you so much for the support over the last few years.
Now that “Needlenoggin” as moved into his own home, this blog has been (functionally) discontinued.
Should any important updates occur, I’ll post them here, as well as any new dates for “Little Monkey” surgeries (although those are best found here). “Rorysaurus” is doing much better thanks to continued therapy and psychiatric medication, and has started to make friends.
This May, I broke the cartilage in my left ankle, and got fitted into an Aircast for the summer. It was very, very uncomfortable and slowed me down quite a bit (although nothing really keeps me in bed for too long):
Then, in August, I had to have a partial hysterectomy, which was, again, lots of not fun. However, three weeks after the fact, I was up, and Tuffy and I did a 26.8 mile bike ride as part of the Portland Century.
So, I'm up and moving again, sore and a little tired, but feeling better than I did a month ago. :)
It has been a while since we updated on my little monkey, and I'm all a-flutter with good news. First, though, I wanted to mention that it is Craniofacial awareness month. Also, NY Yankee catcher, Jorge Posada, and his phenomenal wife Laura, are writing a book about their son's experience with craniosynostosis. They are the founders of the Jorge Posada Foundation, which does many great things for kids with cranio. They're also co-sponsoring our Signing Time concert in Seattle, so please go check them out.
Anyway, we took the little dude in to Doernbecher to see the developmental pediatrician. Last time we were there, we were given the phrase "global developmental delays." It was a rough appointment. This time, he still didn't really want to play with them in their little room, but he did stack blocks, do the puzzle-thing and point to the kitty cat. Yeah, he can do that now. He also showed off this trick every time anyone said a number:
At 32 months of age, he functions at a 21 month old level, we're told, even with all of his signing and new skills. He's still behind, but at least he's making progress. And who knows, he may catch up. Rorysaurus did. This is her, at the same age, reading What's Wrong, Little Pookie? with me:
This is Little Monkey's take:
He's grown a pinch, too. He's 34 inches tall, which is half an inch up from last time, on track at 3rd percentile. He's also 28.5 lbs, so he's gained there, too, and is hovering around the 10th percentile. The head is the same. Now, we just have to find him a preschool!
What were you doing two years ago today? It was a Monday, so you might have been working, going to class, or enjoying a hard-earned day off. Perhaps you were playing with your kids, or on vacation? Maybe you don't even remember.
However, for my family, July 21, 2008 was the day that the whole world changed.
I had spent the day at home in Oakland, fretting about my 6-month-old son's newly scheduled neurosurgery date. My Little Monkey had been born with a skull condition that had required a complete craniectomy at 7 weeks of age, and we'd just found out he was going to need yet another surgery in September. When my husband came home from work, I needed a break, and took my little motor-scooter out to do some errands. What I returned to was a scene out of a horror film.
Right as I was coming home from doing some errands, I’d heard a crash, then these guttural noises coming from the back yard. I’d run to the gate, unlocked it, and was met by the sight of my nearly three-year old little girl, Rorysaurus, blood matting her curls and smeared all over her face. After realizing she wasn't hurt, I’d assumed something had happened to her brother, as all of my fears at that point centered on him, and was afraid she’d fallen on him while playing and had crushed his skull.
I raced around the corner of the house, and scanned the ground for my son’s body. My eyes swept over the grass, over towards the laundry room, then back. I couldn’t find him. "He’s over there," our neighbor had said, pointing to the cement in front of the basement where we all did our laundry. And there, on the ground, was a mass of red, blue, flesh and dirt. I stared for a minute before rushing over to the heap that was my brother, Needlenoggin. He was lying flat on his back, looking up towards the swinging wooden planks that had been our landing, nearly three stories above him.
Needlenoggin, then 22, had been taking Rorysaurus out the back door of our third story apartment, when the stairs had collapsed. They'd been holding hands, and then they were falling. In a split second, Needlenoggin pulled my little girl to his chest, rolling around her before they hit the support-beam midway through. His first thorasic vertebrae burst as they smashed through that 8 inch piece of wood, and then they finally slammed into the pavement and garden fencing 30 feet below my back door. He shattered two other T-level vertebra upon impact, fractured C-1 and C-2, sustained a traumatic brain injury and a compound fracture of one arm, and partially scalped himself.
Rorysaurus walked away with a few minor scratches.
After his fusion, and his 6 week stay in a rehab facility, my brother was sent home. We weren't provided with a nurse, a wheelchair, therapy or a doctor. We had to buy a wheelchair van, and my life became all about paraplegia, lawsuits, therapies, medications, bowel treatments and depression. Rorysaurus began treatment for Post Traumatic Stress Disorder, but a wheelchair is a more visible sign of an injury, and so my brother commanded a much larger share of our attention, energy, time and money. We were told he might never feed himself, and wouldn't sit up, stand or walk ever again, and I had to encourage him to fight to get as well as he could in spite of the grim prognosis.
What passed was easily the worst year of my life. I made new friends in the disability community, and learned important things (like not to say "wheelchair bound"). I gathered knowledge and pushed my naturally-lazy and now-depressed baby brother into working as hard as he could. MediCaid repossessed his wheelchair, refused to cover life-saving medications, and wouldn't provide for important Durable Medical equipment. I was forced to beg and borrow to keep him alive, all the while wondering what happens to people who don't have family, or who don't have tenacious family. One social worker answered bluntly. "They die." I felt myself losing my mind, as I didn't see an end to the constant care, and I couldn't see any chance to get help.
The lawsuit ended, we moved out of California, and my brother now lives independently, with minor household assistance from live-in help. Had the lawsuit not gone the way it had, he'd still be living with me, and I know I'd have lost my mind. I now see my brother a few times a week, when we go to visit or go see a movie with him, or when he has some friends drive him over. He's still battling some pretty severe depression, and doesn't have enough fine-motor control to drive.
However, this was our 2009 Christmas picture:
He's standing, unsupported, holding his 40lb dog. And, when the Oakland fire-department invited him to their big gala, and we couldn't afford to go, my brother practiced, and practiced and practiced to make them a video:
That is as far as he can walk, and, as you can see, he's a little unsteady. He wanted them to see how well he's doing, however, and for them to know he's grateful for everything they did for him, and for my daughter. (Full disclosure: the bike was a gift from the firefighters to my daughter, after they took her and Needlenoggin for a ride on a firetruck, and PJ is her favorite guy on the crew).
Needlenoggin still isn't healed, either physically or mentally. He functions like a 13 or 14 year-old boy, has lost most of his short-term memory, and has horrific anxiety attacks. He can shuffle a few feet without crutches, and needs to use a wheelchair to do anything more than get through a parking-lot, but to a degree, his disability has become far less visible, which makes it hard to deal with things like this:
The other day, I took Needlenoggin grocery shopping, and we took one of the blue reserved spots up front. I hopped out to get one of those little electric shopping carts, and he eased himself out of the passenger seat, a little unsteady on his feet, but upright, and shuffled over to meet me. A middle-aged woman, helping a spry elderly woman out of a sedan a few spaces down, looked at him, over at his placard, and then told him that being fat wasn't a disability. Needlenoggin I and just looked at one another in shock, and cracked up laughing, much to her dismay. When we'd settled, he turned to her and said, "One, neither is being old, and your mom seems to move much better than I ever will. And two, don't make assumptions. If you had taken the spot, we'd have parked that few feet away, and wouldn't have told you how you weren't "crippled enough" to use the space." Then, he summoned up all his dignity, sat down in the little cart, and pulled down the back of his T-shirt, exposing the foot-long, inch-wide fusion scar as he rode away at half-a-mile-an-hour.
So yeah, the young man they told us would have a hard time writing his name now keeps his wheelchair in his garage, only to be used for long excursions. He moves around most of the time on fore-arm crutches, and has more friends than he did before his accident. He won his lawsuit, and I don't have to take care of him for the rest of my life, and we now live in a state where, if he hadn't won the lawsuit, he wouldn't be nearly as abused and mistreated as he was in California. We've pretty much escaped what we were handed two years ago today, and we could just count our blessings, be thankful for the miracles we've had, and never look back.
But we don't. We protest, we write to our Senators, and to the ones who "served" us in California, we write articles and we agitate. We donate time, and what little money we can, to the charities that pick up the slack left by state programs, and we are some of those that continue to demand real universal health coverage. Because we were lucky, we feel compelled to do something to repair the non-existent safety-net for those who aren't so fortunate.
And, for those who will appreciate our family's sense of humor, I share with you his favorite picture of himself:
And the Spinal Fusion Cake I made for him (Note the injuries to multiple vertebra and the burst T1):
Alright, don't get too excited, but young Mr. monkey has gained .75 lbs and and 1.5 inches since his December visit with the endocrinologist! She'd put him on a low dose of thyroid supplement, and he's now growing only slightly less quickly than any other kid his age (in short, he's not catching up, but he's not getting left behind so quickly, either).
We really wanted to be able to go down and share this event with the C-shift crew, but were unable to due to finances and minor medical issues. However, we sent this down in our stead:
a brain scan and a heart-ultrasound for my son, along with various blood tests and questionnaires, we are...
...still at square one. ::sigh::
He's small, a little slow, and no one knows why. Poor baby. He's got some new endocrine panels coming up (to check his levels after we started the thyroid pill), another appointment with the geneticist, and he gets to see a new opthamologist as well.
At least he is doing well with his speech pathologist. She's got us doing some website work with him at Starfall, and he's very good with his repetition. Also, his signing is getting better, as he can now ask for Signing Time:
You all remember how my baby brother gave money to the C16 crew of the Oakland Fire Dept during the big ice cream event? He wanted them to be able to do something good for someone who needed help in the future, and left it at that. Little did he know he'd be helping another paralyzed hero and the man's two little girls.
In October, some gunmen stabbed a man they were mugging in Oakland. Salvador Recinos Mendez intervened, pulling the victim into his car and driving off. The men then shot into his vehicle, hitting him in the back. The bullet ripped through his spinal cord, nearly killing him. He had no insurance, and he was the sole breadwinner for his family, including his two little girls. Word of his heroism spread, until it reached the Oakland Firefighters and the Oakland Tribune, who sprang into action in their own ways.
The Trib published this wonderful article and collected nearly $10,000 for the family. It was this sentence that caught my eye, however. "The fire crew that responded to Mendez's shooting also delivered holiday gifts to his daughters and will present the Oakland Fire Department Citizen Hero Award to Mendez after his release from the hospital. Firefighters also earmarked $1,000 for furnishings for the family once they relocate to a home that is wheelchair-accessible. " That sounds like the Random Acts folks to me.
Turns out, it was. That $1000 went straight from my baby brother to the family of this man, pausing only long enough for the phenomenal people at Random Acts to direct it. We love you, fire guys!
