Mostly Medical Misadventures & Mishaps

Up and better

2010-09-03T12:33:00.000-07:00

Me, that is.

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. :)

Mama's Little (but growing!) Monkey

2010-08-31T14:13:00.001-07:00

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!

Two Years

2010-07-26T21:59:00.000-07:00

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):

X-Posted at DailyKos

Growth!

2010-05-29T16:11:00.000-07:00

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).

Yay! Let's hope the progress continues.

Oakland Fire Random Acts Ball, part deux

2010-05-29T16:05:00.000-07:00

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:

Well, after another round of specialists

2010-03-14T12:39:00.001-07:00

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:

One Paralyzed Man Helps Another

2010-02-15T14:55:00.000-08:00

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!

My son has turned two!

2010-01-02T18:48:00.000-08:00

Especially since he still looks just like he did at one, I have such a hard time seeing him as a two year old. He still seems like such a baby to me.

HOWEVER, my "baby" can now eat just about anything you put in front of him (excepting meat, which he chokes on). He regularly eats two bananas and two granola bars and half an apple at breakfast. He even stole the apple I got in my stocking, and tore into it on Christmas morning:

He also has taken to Signing Time, a program designed to teach children American Sign Language vocabulary so that they can better communicate with their parents and caregivers. He now has signs for MILK, MORE, FOOD, SIGNING, APPLE, PLEASE and BABY, and he can say our names, "mas", "banana", "night-night", "good job" and "uh-oh!" I can't stress enough how effective Signing Time has been for our kids (it has been enough that I have actually registered to teach a few classes of it).

So much good news. We even got in to see an endocrinologist at Doernbecher Children's Hospital in SW Portland, and we should be getting his hormone levels back in a week or so. However, a few days ago we went to Doernbecher's via the aerial tram (sky buckets!!!) up the hill to the hospital, and it was much better than trying to park up there. No joke, you park at the waterfront, hop in this thing, and can head up the mountain for cheap (roundtrip is $4):

My monkey-son loved the tram, yelping "Whee!" the whole way across. Then, we waited nearly 2 hours to be seen.

The cardiology group didn't have his records from Oakland, but I very nicely explained that he had a bicuspid aortic valve and a systolic murmur. They were very nice, and very surprised that I knew all of that, and all the nurses and docs fell in love with my rosy-cheeked angel boy. One tech did his EKG, and we were ready to head on out the door to come back again in 6 months for an Echo. "Ummm," the doctor started...

"I know that face," I thought. "I hate this part". Long story short, they're doing that "Well, it doesn't NECESSARILY mean anything, but could you come in for more tests?" stuff. They did not like something in his EKG, didn't tell me what, but he's going in for a heart ultrasound in early January. They'll let us just do it in clinic when we get his endocrinology results, but they're going to sedate him to do it this time (which bodes badly, since that generally means a much, much longer Echo). No idea hen that will be, but I have a feeling we'll be getting to know Doernbecher as well as we know CHoO!

Can't this kid EVER catch a break?

Christmas in Portland

2010-01-02T18:08:00.000-08:00

So, given the stresses of the last few years, we decided to try and make the holidays as low key as possible. This, in part, meant having no big family celebrations for Christmas. Instead, my folks came up in early December, and we did a small, low-key gift exchange. My in-laws will be coming up in early January for a weekend as well.

Here's the Christmas picture we all took:

Yes, that IS my brother holding his 45 lb dog and STANDING. Isn't it miraculous? He's lost so much weight (and has a new nurse who is on him about his practice and exercise all the time). Coupled with prayer and luck, he's continued to make progress. He can even walk from his bedroom to his bathroom WITHOUT crutches now! (Any further and he is likely to fall down. He's sprained his ankle twice since we've been in Oregon). Even his new doctors are wowed.

Mentally and emotionally, he's not recovering as well or as fast (still very addled hen it comes to time, his short term memory is shot, and he has break-down fall-into-the-fetal-position-on-the-floor anxiety attacks over things as small as leaving the house, sometimes), but there is some movement toward health and away from the fog of terror and confusion he lives in. Please continue to keep him in your prayers!

Flu

2009-11-21T09:01:00.000-08:00

So, the kiddos have had their shots, but I don't have a doctor up in Oregon yet, so I haven't What does that mean? That means my Friday night was spent in bed, with a 101 fever, and puking my brains out. Ick.

What the real problem is though, is that we don't have a community of friends up here like we did in the Bay, which means when I couldn't get upstairs to get my monkey when he woke from his nap, he had to stay, crying, in his room for 2 hours. It took that long for the nausea to pass (and the tylenol to bring the fever down), and I felt (and feel) awful about it. We really need to get Tuffy, Miss Manhattan, and Little Bit up here so that we have a functional family (and can help each other when one of us is sick).

I get so panicked thinking about the "what if something happens to me" scenarios up here, and it is really, really scary. ::sigh:: Hopefully we'll all get reunited soon.

I need your help. I want to build something.

2009-11-18T15:15:00.000-08:00

Some of you may recall the post I put up a short while back about the passing of my dear friend Tony. Well, as always happens when a loved one passes, I've been dwelling on it a lot. It's funny how the image of his hands with their surprisingly thin skin seems to hit me with more force than his face sometimes, or how I'll spend two hours unable to stop reliving a 10 minute conversation. I don't think I ever once drank rum with him, but he was known for his taste for it, and every once in a while, I take some time to just sit and slowly absorb a small glass, sip by melancholy sip, fancying myself closer to him somehow.

Tony was a marine biologist by training and spent a lot of his time volunteering at the Cal State Long Beach Science Learning Center and with their Mobile Science Museum, which went around to elementary and middle schools and showed off lots of little educational and fun demonstrations to get kids interested in science. Tony loved the sea, and his favorite portion of the display was the tanks that held the sea life. There was a loop playing at the funeral which included video of him showing sea stars to kids and playing to a crowd.

My wife still can't think about Tony without remembering the visit to his home when she opened a cooler looking for a drink and was attacked by the many tentacles of the octopi Tony was caring for in anticipation of bringing the Science Learning Center some new specimens. Even as a kid he loved the sea, and he volunteered at the Science Learning Center because he wanted to bring his passion to other youngsters. I have a very clear picture in my head of that exact image you see above, but with him as a boy, from when we were maybe 10 or 12 years old and we went to a local aquarium, that same amusement on his face as he reached into the touch tank. Here he is as a child, not too long after I first met him, I'm sure, with his beach-art of an anatomically correct shark (count the gills!).

Well, I recently got a very solid reminder that despite my feelings of loss, he isn't entirely gone from this world, and I decided I'd ask you all to help me keep another little piece of him with us. After his death, Tony's sister, Jane, and the director of the Science Learning Center, Jim McKibben, collaborated to set up the Anthony T. Liaw Memorial fund. I recently opened my email to see a notice from Tony's sister that the fund has until December 31, 2009 to hit the goal of $25,000. If we can meet this goal, that turns the fund into an endowment. That is, the funds would then be kept permanently and invested to provide income for continued support of the organization Tony spent so much time with. Currently, the fund is at around $17,000, which is certainly not too shabby. I'm writing this post in the hope that you all can help me push it over that line so it isn't just a one-time donation.

I also think it may be worthwhile to include a partial transcript of Jim McKibben's words at Tony's funeral, to give you someone else's perspective on why he was so special. After a brief introduction, Jim had the following to say.

He tutored many of his classmates. I would often walk into the Student Learning center to see Tony helping other students preparing for exams. From that point on, Tony became a regular part of the Science Learning Center. I would see him on an almost daily basis. Needless to say, through the years, Tony volunteered literally hundreds of hours of his time to make the program a success.

Because Tony had such a fondness for all animals, he took on the responsibility of helping to maintain the various animals in their enclosures. He took a great deal of delight in getting one of the snakes out for our presentations to our young visitors. He encouraged them to touch the snake, to overcome their fear of snakes. Tony was truly a natural when it came to helping people become comfortable around snakes and other animals. Tony mentioned to me on one occasion that he remembered when the mobile science museum had come to his school, and how it had made a lasting impression on him.

He was, without a doubt, the most reliable and dedicated volunteer the programs have ever seen. He was always punctual and I knew that I could count on him for his help whenever needed. Even after graduation, when Tony began working for California Department of Fish and Game, he told me to call him whenever we had an upcoming trip with the Mobile Science Museum, and if it was at all possible, he would be there. There were some special occasions when Tony was able to change his work schedule to help out with the Mobile Science Museum....Tony could always be seen at the touch tank, encouraging people to explore and touch the sea creatures that he found so fascinating. Tony was more than just a student volunteer, he became a close friend.

We talked about a whole range of topics as we rode in the mobile science museum to our visitation sites. ... Today, I can't help but walk by the Science Learning center and expect to see Tony sitting at a computer, looking up with his beaming smile and saying, "hi, Jim!" He will be forever missed, but he will be never forgotten.

The official announcement establishing the memorial fund included the above two photos and the following text.

The Anthony T. Liaw Memorial Fund has been established in his memory to support the Cal State University Long Beach Science Learning Center and Mobile Science Museum, a wonderful opportunity for children to learn about science and marine biology first-hand. The CSULB Foundation is a 501 C3 non-profit charity, and tax-deductible gifts may be made out to:

CSULB Foundation

c/o Jim McKibben, MS

Director, Science Learning Center/Mobile Science Museum

College of Natural Sciences & Mathematics

1250 Bellflower Blvd, FO5-104

Long Beach, CA 90840-4501

mckibben@csulb.edu (562) 985-4841

The Science Learning Center/Mobile Science Museum program website is under development at: www.beach-science.org.

Please help us establish this endowment, to let Tony's legacy continue to bring joy and education to thousands of kids in and around the Long Beach area, so that he may never be forgotten. Please help me do this last thing for my friend.

We Need House

2009-10-22T12:22:00.000-07:00

No, not a home...we have one of those. We need House, M.D., to help all the pediatricians, lab folks, and surgeons figure out what is wrong with my son. Because no one, and I mean no one, knows what is going on in his tiny little body.

So, about five months ago I wrote a post about my son's refusal to grow. Well, guess what? Over a year after his second surgery, he is the in the second percentile...still the exact same size as he was at 10 months of age. The good news is that it means he doesn't have to have anymore surgery for a while, because his brain isn't outgrowing his skull. This was confirmed with a check of his optical nerve, and there's no pressure, so he doesn't need to come back and see the surgeons for a whole year (barring any big changes or a problem at his eye check-up in 6 months).

The bad news is he isn't growing, period, and no one knows why.

He's been tested for CF, and when I go to his appointment on Tuesday with his new ped group, we'll have to get a referral to a pediatric endocrinologist to check his pituitary and thyroid, I suppose, but I'm just afraid he'll stay this way forever (and don't tell me that doesn't happen, because it does). I'm just afraid he'll stay this size or at this developmental level, or both, and that isn't the life I want for my son.

More appointments this coming week (regular pediatrics and another OT appointment), and hopefully we'll find a good endocrinologist for him. :/ Keep the little guy in your thoughts and prayers, please.

Little Monkey's diagnosis

2009-10-22T11:37:00.000-07:00

Remember Little Monkey? The sweet little angel baby with the skull problem who, 30 months ago we thought was going to be the big medical challenge for our family? He's almost 2 now, and still a sweet little love.

His beautiful wispy curls hide the scar very well, and he's fiercely happy, which is great. He climbs well, can carry a ball upstairs (in order to throw it down, chase it, and bring it back up) and signs for "milk," "more" and "food." I couldn't have asked for a more easy-going and laid-back kid.

Which, it turns out, is sort of a problem. On Tuesday, he and I trekked out to SW Portland for his evaluation by an occupational therapist. I know you're all wondering what could possibly be wrong with him, right?

Well, to start out, he doesn't talk, not really. When we first moved to Portland, he had NO words, no signs, and could communicate at all. Now he has "che-che" (leche, or "milk" in Spanish), "up!" and "Papa!" that actually mean something. He parrots a little now, too, which is awesome (before he would just sit in contented silence). Still, at 23 months of age, he's speech delayed.

We're still trying to schedule an evaluation with a speech pathologist, but the OT planned to check on the speech thing.

He's also not eating, like at all. He still guzzles Pedia-sure like he's afraid we're going to run out of it. For days at a time he'll refuse any solids, and then he'll be willing to eat some banana or bread (crackers, bread, chex, cheerios). However, he doesn't chew, he only sucks, so if he gets too much in his mouth at once, he gags and either throws up or aspirates. Apparently, he doesn't chew because his jaw-muscles aren't strong enough. He can bite you, and hard, but prolonged chewing is hard, and hurts, so he doesn't do it. This may have something to do with his lack of speech as well, I'd guess. We were given a little tube-toy to try and teach him to chew, and encouraged to work on it with him, since the very concept seems to elude him.

Then, as the lady was looking through her list, she realized that he has a few indicators of an autism spectrum disorder (mainly his fascination with ceiling fans/wheels and his silence). The boy does LOVE things that spin, and he is super quiet, so I had known they would be looking for this. Still, when the therapist was showing him one of those hit-the-ball-with-a-hammer toys, he copied her on the first try and then looked up at her to make sure he'd done it right, inquisition all over his face.

"Well, he's NOT autistic," she exclaimed, laughing. "Good," I thought. "So what is he?"

Turns out, the answer is "complacent." I mean, he is delayed, but that's sort of expected after his surgeries, but he should be catching up. The reason he isn't? It's hard, requires a lot of effort, and he's quite happy how he is, thank you very much. "Do you know any second-born boys?" she asked me, and I laughed, thinking of Needlenoggin and Tuffy. "Do you see a difference between them and their older siblings, especially sisters?" Again, I laughed. Tuffy's sister is very driven and accomplished, with a doctorate degree and she's going to law school. While not quite as impressive, *I* am Needlenoggin's sister, and have 2 kids, work, write, do art, am a wife and a full-time grad student. I went to Berkeley.

"Yeah, us older girls are a bit more driven," I admitted. She went on to explain that he chooses the path of least resistance (like spinning toys or bouncing a ball) because he can't make a mistake with them, and they make him happy. Stacking, drawing, whatever else, all take more effort, and he can fail at them, so he chooses things he's comfortable with instead.

"He'll work if there's something he really wants" she went on, which explains how and why he gets all worked up when I won't let him open or shut a door he wants to play with, but he works for happiness; either for him or for Tuffy and I. He'll do his "besos" trick (kissing us) because we laugh and squeal and smile and say "good job", and if we're happy, he's happy. So, we have to make sure he knows how happy we are when he stacks blocks, learns a new word or sign, or does something he's not comfortable with.

After discussing how well this complacency was going to work in school and being told he'll probably need external reinforcement, like praise and perks when he does well to motivate him, the OT said something really important:

"Crazy driven people, as adults, contribute a lot to society...medicine, law, what have you. In order to live whole and complete lives, to be truly fulfilled and happy, they need to LEARN to relax, and let go of perfectionism. Easygoing people on the other hand, are happier, but can end up lazy if they don't learn to work. Your son NEEDS to learn to chew, eat, talk, etc, but he'll do it if it makes him happy, or you or your husband or your daughter happy. So make it a game, and show him that doing these things makes life better for him."

I liked that, and we scheduled my boy for every week for the next couple months. He'll be going in for a speech eval as well, probably in November, and then we came home and packed up for his neurosurgical/plastic surgery/eye appointment on Thursday.

Sitting at the dinner table, I was telling Tuffy all about the chewing games we're supposed to work on, and how worried I am. He reached into a box of crackers, stuck one half of a Wheat Thin into Little Monkey's mouth, and chucked him under the chin. "Bite," he said as the cracker snapped in half. A few more times, and my son will now bite crackers in half. In two hours, Tuffy taught him what biting was, if not that he should actually chew his food! Progress, right?

Rorysaurus Update

2009-10-15T23:13:00.000-07:00

So, we moved. And Tuffy isn't here except on some (most) weekends because his job is in CA. And Needlenoggin has moved into his home. And Rorysaurus has started at a new (very good) school:

I sort of expected this to be a transition for her, but not an especially bad one. I mean, she's made friends with the neighbor kids (riding her bike with one and inviting two others over to play in the backyard on the swingset I built her). She loves her new school, with the exception of an awful little bully girl who intentionally excludes her from things. She even has a little girl with the same first name in her class. This was all good, I thought, and knew she'd settle in eventually.

Well, as always, my version of "eventually" didn't take into account the way her world went, and her PTSD. Poor baby has reverted to peeing in her bed every night, had a couple of accidents at school, and is generally a lot more panicky and clingy than she has been the last few months. This is also the first year she's been really exposed to Halloween, and she's been WAY too interested in the blood/skeletons/scary green women making bone soup.

She's been telling us that if you fall "too far" you explode (to be fair, her uncle did kind of explode on her), and crying a lot, which panics me, which causes her more anxiety...still I was hoping we could deal with the cycle on our own.

However, I realized that we were really going to need to go back into the whole therapy thing with her at a store the other day. We were ealing through the costume aisle, looking for red face make-up for Tuffy (he and Jules are going as devils, while Rorysaurus and I are going as angels. Yes, we do find this funny). Anyway, she found a plastic sword and picked it up to explain to me how she, as "girl-Batman/Spiderman" was going to fight "bad guys." Well, this sword had a red-pseudo-blood-liquid in it, so when she moved it, the "blood" splashed around inside the clear plastic of the sword.

I hate being the parent with the screaming child in a store. And here she is, acting like she's having a Vietnam flashback, just screaming and screaming about the blood and the owies. I tried to explain to her that it was fake, but she is a very literal little girl, so that didn't take. Then, she paused, looking at the costume rack, and got very, very quiet.

I looked to see what had caught her attention. Right in front of her was one of those "knife-through-the-head" gags:

and next to it was a child's doctor costume:

"Crap," I thought. "This is NOT going to go well."

"Mama...is that a doctor like my doctor or is that like Little Monkey's head doctor?"

I confirmed that it was, indeed, a surgeon, and waited. She looked down at the sword, and back at the gruesome prop. "Ohhh," she started, "this is a doctor sword."

What?

"And this person here," she said, pointing to the kid with a knife in his head, "is going to go as Little Monkey for Halloween." Sometimes, her connections do not make any sense, and sometimes, I never even know what she's thinking, but for her to think that this bloody sword and this impaled child were what was done to her brother gave me chills. I must have looked horrified, because she patted my arm and told me that the surgeon only cut the boy's head so he'd get better, and besides, it was pretend.

Smiling, I started to move us to a less terrifying aisle. She didn't want to give the sword up. "Can I have the doctor sword, Mama?" she begged. I told her no, and bought her some piece of cheap, plastic, princess Aurora crap instead. Seriously, whose kid does this stuff?

Reluctantly, I dragged her into a new doctors' office in a neighboring city to meet an NP and get a referral to therapy. I want her to be alright, and part of me wants to deny that she has any problems and thinks if we do just ignore it, the whole mess will go away. I know that it won't, though, so we're heading back to therapy.

On the other hand, I do get some really fun moments with how aware she is. When her Pre-K class all colored a little skeleton to bring home, hers was the only red one. I asked why it wasn't pink, like EVERYTHING ELSE she brings home. "Because bones are inside you, with your blood," she explained, as if I were the child. Fair enough. She was also at school when some little boy fell off a swing and started to cry. She ran over to him, looked him in the eyes after helping him to his feet and asked, "is there blood?" When he said no, her response was, "Oh. Well, then, man up." ::Sigh:: She's fun, sometimes.

The BORP ride

2009-10-06T16:02:00.000-07:00

Let me first say that what BORP does is amazing. I mean, really and truly, it is a fantastic organization that gives so much to so many people. Giving people with disabilites the chance to participate in sports like goalball, powersoccer and wheelchair basketball is so tremendous, and their cycling program is the best I've ever seen.

That said, one of their fundraisers every year is the Revolution. It is a few bike rides, from 10 miles to 100 miles, as well as an auction and a festival, that raises funds for BORP's program. There are volunteers who ride at the front of tandem bikes so that blind riders and do the ride. People ride handcycles, tricycles, and other adaptive bikes, so that people of all ability levels can participate, from all age groups. Just thinking about the people we saw at the Revolution makes my heart swell, as so many of them face much greater obstacles than you or I, and they were still out there raising money for such a great cause.

Of course, you know Needlenoggin, Tuffy and I signed up for this a few months ago. The plan had been for Tuffy, the kids and I to do the 25 miler, and for Needlenoggin and Miss Manhattan to do the 10 miler. However, the move to Oregon sort of changed out plans, and since Miss Manhattan was feeling ill, we decided to do the 10 miler with Needle ourselves. My mom wached the kids at our home in Portland. We flew down the night before, rested as well as we could, and then trekked up to Napa to ready for the ride.

We got all suited up and ready to go, and then the ride began. Now, please remember, as you read this, that ONE year ago, almost to the date, Needlenoggin came home in a power wheelchair. He had a chest stap to keep him from falling out of the chair because his abdominal muscles wouldn't hold him up. He couldn't get in and out of bed by himself, shower, use the bathroom, and he was 290lbs. His lower body only felt one sensation...neuropathic pain, and his spasms were so bad that they could, and did, throw him out of his bed to the floor.

Helmet on, feet strapped into the pedals of a borrowed adaptive Sun Tricycle, Needlenoggin paused for just a moment at the starting line, and then pushed his left leg with all of his might. The bike moved forward. His right leg hasn't quite got to where it moves in any kind of automatic function, so the pedal moved it around as his left leg pumped. Down the bike trail we rode, talking about the trees and the plans for the evening, and petty soon, his right leg was into the ride as well, pushing and pulling for all it was worth. Up a hill, up another. "Well, at least the first half is uphill," I said. "That'll make the ride back easy."

Around the next corner, we came to a downslope, onto a street with cars. Needle didn't pause. Down he went, flying past other riders, and clearly enjoying himself. We turned onto the next bike path entrance, and I panicked. There was a lovely, meandering stream, all green moss and clear water, and across it, about 5 feet over the riverbed, was a wooden bridge, about 10 feet long. Needle has adamantly refused to traverse any wooden structure since the accident, something that has made a few doctors hard to see, and the back decks of his new home a challenge.

He went right over it, talking the whole while. He did the same with the next three bridges, one easily 100 feet long, that rattled in a slightly unsettling manner. Even when we came to a not-well-marked section of the trail and got a little lost, he helped us find the path and zoomed down the trail (cutting a few people off as he went, of course). Down, down, down.

We hit the turnaround point, and Tuffy and I checked to make sure we'd brought the necessary equipment to help haul Needlenoggin back up the 5 mile hill. We rested at the bottom, drank some water, and then we went back. Up, up, we climbed. Slower than the woman power-walking up the hill, we pedaled. Needle, too. The woman was giving exasperated glances at the disabled riders coming up and down the hill, and Needle nuttered under his breath "You think you're better than me because you can walk?" and redoubled his efforts. We passed her on a straight way, and he got very smug.

A mile further, and the trikes right back wheel hit a ditch, dumping Needle off the side of the road. Tuffy and I pushed the trike back onto the asphalt, and away he went. That was the only physical assistance we gave him.

As we got to the home stretch, Needle started sweating, and pushing himself as hard as he could. I tried to come up on the side of him, and he'd cut to the middle of the road, keeping me behind him. I realized we were racing when he laughed across one of those wooden bridges. Tuffy caught up, and we crossed the finish line a few feet behind one another, Needlenoggin first.

In just over an hour, my 240lb paralyzed brother, who was supposed to be on a respirator and checking for bedsores on his totally useless legs, had biked 10 miles. I was thrilled.

He was exhausted.

We took pictures and headed him, but not before handing over the big check to BORP. With everyone's help, Needlenoggin raised $7250 AND was able to buy an adaptive trike of his very own. Last week, in Portland, he harnessed up Dingo and took her for a run, all by himself. Such things were supposed to be impossible, absolutely out of reach, but he's had a miraculous recovery, and as a family, I think we've done alright together.

Now, look, Needle isn't perfect. In some ways, he's a young, teenage kid again, and that can sometimes make him thoughtless and irresponsible. When Tuffy's back tire went flat, Needle pushed on, not even thinking about waiting for Tuffy, who was prepared to drag him up the whole 5 mile hill. This has been very hard for my husband, who has given so much of his time, effort and sleep over to Needle's care, and who feels like there isn't a real connection between them. Needle's behavior isn't meant as an insult, he just doesn't think, and I think the mental issues due to hitting his head as hard as he did are really going to be his biggest challenge. Still, it was hard for Tuffy, who felt sort of left out the entire ride.

As of mid-September, Needlenoggin no longer lives with us, though he is close by. He has two part-time attendants and lives on his own with Dingo, and comes to visit us weekly. He even climbs the front steps and up into the play room to watch TV with the kids. We've found him a doctor at Oregon Health Sciences University. His next appointment, where he'll get all of his neuro/physical therapy/whatever appointments is on 10/28. He has no health insurance, but that's what the settlement was for, and he's stable on his medications.

Thank you to everyone.

Firefighters and Ice Cream

2009-09-28T19:31:00.001-07:00

So, the firefighters who saved Needlenoggin's life, and were so careful in their care of him that his nerve pathways weren't destroyed, told him that once he could climb the stairs on their parade-rig fire-engine, they'd take him and Rorysaurus out to ice cream at Fenton's Creamery (recently featured in Pixar's movie, Up.

Well, stairs when your legs don't work is sort of an unfair challenge, but he was determined to do it (and I was for him, on the days he wasn't too determined about anything) and we kept working with the Slone guys and working out at home, because he really, really wants to impress those firefighters.

So, on September 2nd, a week from the year anniversary of his release from the hospital, they came to pick him up at our apartment. We wheeled him out to the sidewalk, and he went up the stairs, crutch in hand, to see the fire guys.

Click here to read the Oakland Tribune article or here to see the KTVU video.

Very good ice cream in HUGE portions was consumed:

The firemen didn't forget Rorysaurus, though, don't you worry. :) This was a few days after her 4th birthday party, remember, and they brought her a brand-new two-wheeler.

She was very grateful, let me tell you::

She goes about riding around in our neighborhood with it now (when it isn't raining, that is):

Back to Needlenoggin, though. He presented the firemen with a check for $5000, in order that they might help the next family they ran across who needed a Random Act of Kindness. Lo, an behold, a few weeks later, an Oakland man with two young daughters was shot and paralyzed trying to save a man he didn't know. Random Acts used some of Needlenoggin's money to send toys to his girls and help the family out.

Thanks to all of you reading this, and know I'll update about the BORP ride soon. :)

Happy birthday, Rorysaurus!

2009-09-28T18:52:00.000-07:00

well, Rorysaurus made it through this year! It hasn't been easy for her, at all, and I felt very bad for her that we were moving her out-of-state right as she'd found some stability. She was super excited to have Batman at her birthday (although she was a little afraid of his size this year).

However, even Batman got upstaged near the end of the party. It was cake time, and Tuffy came out bearing one of the two Batman cakes I'd baked.

Then, behind him, bringing out the other cake, came my little brother:

With one crutch, he came out, set down the cake, and sat down. It was a lot of work for him, but he loves to show off. :) How is this possible, you might ask?

Well, remember my mentioning the Slone brothers, the chiropractors? They'd sent him home with a little box that zapped one side of his body or the other with electricity while he did some neurologically strenuous exercises. Basically this current widens his neuro-pathways, and lets him move his lower body better than he normally could, which lets him build more muscle than he usually could, which increases blood flow to the areas, which widens the pathways permanently. :)

Anyway, hard to believe that during last year's party he was undergoing his second spinal surgery because fluid was collecting in his back and we thought he was going to lose the use of his hands. Crazy.

Legal Wrangling Ends!

2009-08-25T08:43:00.001-07:00

That's correct, ladies and gentlemen, Needlenoggin's suit against those responsible for his accident has come to a close. Thanks, in large part, to the great law firm we were referred to, the defendants settled out of court, and the spectre of never-ending-mountains of debt has finally passed.

Now, to answer your very pressing questions.

How much?
None of your business. :) Seriously, though, remember that whatever the amount, a third went to the lawyer AND MediCal demands payment back for his weeks of rehab, his wheelchair, his surgeries and all of his medications (the bill from them alone was hundreds of thousands of dollars). Then Needlenoggin owed over $70,000 in back rent, food, clothing, medical services, and now he'll have to pay for all of his medications and doctors out of pocket until the healthcare disaster in this country gets fixed... You get the idea.

Are you going to tell us anything?
Yes. The settlement bought a house in Portland, Oregon for Needlenoggin (pictured below):

3 bedrooms, and a space for a live-in-nurse to live on the premises, since he'll likely need assistance for the rest of his life. It also paid to have the home fenced and ramped, the carpet torn out and make it wheelchair accessible. Then he'll get a check every month that should cover his medical expenses, utilities and pharmaceuticals. It should even probably buy him food.

He still is unable to work, but we're hoping he'll be able to get up and around and start working at least part-time eventually. From his one lump sum he has a few charity donations he is planning on doing, as well as buying some furniture (moving out of the hospital bed!) and some random electronic crap, but he's been very cautious about how he's been spending his money, with (almost) no large amounts spent.

As for us, we're moving in 2 weeks, right along with Needlenoggin, into a home of our very own:

The new house is about 8 miles from where Needlenoggin will be living, and right off of a bus line so he can come visit any time he'd like. He chose to buy his home in Portland because he knew it was where we wanted to go live, and he gifted us money for the down payment on our home.

And, since we no longer need the wheelchair van, we are arranging to sell it, and Needlenoggin has given Tuffy the money to buy a car for our family, as a thank you for this last year. We found a very nice, used Toyota Highlander on Craigslist (still under warranty) and bought it. We were incredibly touched, as we've been the recipient of his two big checks.

Anyway, the cancer issue isn't resolving itself, and Dingo is still limping about, but she's alive, home, and we're packing for the MOVE! Here's the photo of us all out celebrating the end of the lawsuit at Skates On The Bay.

Hit and Run

2009-08-13T11:08:00.000-07:00

So, we have a wonderful German nurse who helps with Needlenoggin's care. He's wonderful, efficient, and we wouldn't have made it out of this without him. Anyway, one of the things he actually enjoys doing is walking Dingo, Needlenoggin's dog.

Well, last night at around 9 pm, they were walking through the parking lot in a building adjacent to ours (because it has little grass islands in it that Dingo loves to sniff), and a silver SUV came through the driveway and hit the dog. It was a slow-speed impact, but the driver kept moving. She got trapped by a piece on the bottom of the SUV , and the SUV began dragging her. The nurse jumped in front of the SUV and waved his hands, screaming for the guy to stop. Both the passenger and driver just stared at him, didn't roll down their windows or turn off their music, and drove off.

This is how far she got dragged:

And, just so you are aware, that beige line is 10 feet long and made out of fur and blood:

Eventually she got untangled from the bottom of the car and bolted down the street. the nurse chased her two blocks and saw her turn, and then the security guard at the end of another 2 blocks saw her turn again. Then the nurse ran upstairs to tell Needlenoggin what was going on, because Tuffy, Miss Manhattan and I had just left to drop cars off at the shop.

So there we are, two blocks away getting gas, when Tuffy's phone rings. Tuffy calls Emeryville PD, and alerts them to a hit and run (a felony) and that we're looking for a service dog. We pack back into the cars and head home, knowing that the nurse is out on a bicycle looking. When we get back to our complex, though, we saw the saddest sight I've ever laid eyes on, and coming from me...

Needlenoggin was outside, near our apartment office. Since his wheelchair had been loaded into one of the cars we were using in the drop off, he wasn't able to get in the chair and roll out to search, so he'd propped himself up on his walking sticks and dragged himself, semi-upright, nearly a block, screaming and crying for his dog. When we found him, his voice was already hoarse.

We packed him into the car and continued the search. Needlenoggin called Animal Control and the local emergency vet clinic. Half an hour passed. Then another, then another. I was terrified that she'd sustained internal injuries and had slunk off into the bushes to die somewhere, so I kept looking to the side of the road while he called out. "Please, God," I thought. "Just let it be a broken leg. Let her be alive and not dying and let us find her for him." Needlenoggin decided he needed to go back inside and rest, and so we got him upstairs.

The phone rang. Someone had alerted the cops that they'd seen an injured dog at the bottom of the pedestrian walkway that goes over the railroad tracks:

I started to head back out of the house with Jason and Miss Manhattan. The phone rang again. It was a different officer, and he was getting reports of an injured dog ON the pedestrian bridge. This meant she'd climbed multiple flights of stairs, and was heading into unfamiliar territory.

We got in the car, and the phone rang. Some good Samaritan had picked her up, put her in his car, and was holding her, waiting for instructions from the police. We agreed to meet them near the far side of the walkway, by Amtrak.

She'd traveled over a mile:

Jason and Miss Manhattan climbed into the back of the car, we picked up Tuffy, and came to get Dingo. She was shaking and terrified, with hair missing all over, and skin missing in a bunch of places. Then we say her rear-right leg, where all the skin had been torn away:

It looked pretty mangled, and so Tuffy held her in the passenger seat while we sped away to the all-night Pet ER. A few shots of morphine later, she was calm enough that we could go in and say goodnight, and pay for the xrays and check-up. We finally got home at around midnight, but not before snapping a few pictures with Needlenoggin's phone.

This morning, we went back over, where they told us she had a minor fracture and may require some minor surgery in a few weeks to close her leg wound, but is otherwise in great shape. We paid for the surgical exam and more overnight wound care, and she'll be transferred to a boarding hospital tomorrow where she'll get visits from Needlenoggin every day, but where they can change her bandages as often as she needs and keep her happily medicated.

So tomorrow we move her from the Berkeley ER to the regular hospital (there aren't pet ambulances), and Needlenoggin is going to hold her in his lap.

Cost of first night's visit in the pet ER:
$1600
Cost of second night in the pet ER:
$1000
Boarding at the hospital for the next 10 days, with meds:
$1500 (approx)
The look on Needlenoggin's face when we were able to tell him she was okay, and coming home?
Priceless.

There are some things money can't buy. For everything else, there's siblings.

Cancer

2009-08-12T04:22:00.001-07:00

No, not Tuffy or the kids, or Needlenoggin or I. But someone we're very close to, and it may change the course of our next 6-12 months. I'm concerned about that, but know it is a life changing event for our friend, which makes me feel guilty about how it effects me/Tuffy/Needle/the kids, and I am certainly grieving for our friend and hoping for a quick recovery.

The friend was told two weeks ago it was a small, operable tumor, and hadn't spread, but today was told it was starting to. They've scheduled the surgery for Monday.

Up through the end of July update

2009-08-12T04:00:00.001-07:00

So, we were in SoCal twice this month, and decided to take Rorysaurus to Disneyland for the first (and second, and third) times. Needlenoggin had been telling us he wanted to take her on her first trip since the October before the accident when he moved in with us, so we decided (after clearing what rides he could do with his doctor) to head on out.

He gave her a ride on the wheelchair up to the castle, which she has recognizes as "Princess Aurora's Castle!!!!!!" Then we took the obligatory "first visit to D-land" photo.

Anyway, he took her on a couple of rides,

He's also been working more and more with Slone Chiropractic, and their nerve-stimulating machine. They even gave him one to use at home (basically it runs a current through your nerves to enlarge the electrical pathways and helps people with nerve damage move), and he's been getting more and more sensation and movement! Here's hoping the progress continues!

Airports and blown knees II, revenge of OAK

2009-07-18T07:12:00.000-07:00

Perhaps some of you remember that when my mother came to visit us for Needlenoggin's surgery and blew out her knee at the airport. Well, as I was running to the airplane through Oakland airport on my way to Portland with MRM and Miss Manhattan, I fell and MRM's suitcase landed on me. I had them keep running, calling out, "No, go on without me!" I should have included "tell my mother I love her!"

Anyway, I got up, ran the rest of the way onto the plane as they were calling out, "Last call for..." Yay! We arrived in PDX, and with a slightly sore knee I drove MRM and Miss Manhattan through my favorite city. Then we got back to our hotel, and my stiff knee was bothering me much, much more. I wrapped it in ice and a towel and went to bed.

When I woke up in the morning I sprung out of bed, and ate it as I crashed to the floor. My knee wouldn't hold my weight. Damn. I managed to get dressed by hopping from bed to bathroom, get in the car and drive to the nearest Walgreens, which wasn't open because it was a Saturday morning before 9. Hm... Crossed the street to a Safeway, bought Ben-Gay and an ace bandage, wrapped it up and headed out with our friend A.T. drove us to a medical supply store to buy me a cane, so that we could visit two different places.

::sigh::

Now, I've been home for over a week, and while the knee will support me (unless I twist or pivot on it), it is still swollen and bruised and I can't kneel or squat without severe pain. And, before you harass, my doc is on maternity leave, so I couldn't go see her if I wanted to. :)

Grump, grump.

Cursed?

2009-07-08T20:35:00.000-07:00

I'm starting to think that maybe we're bad luck.

I mean, look at our last 18 months. Then note that Tuffy's cousin, Blue Rose, came up to spend her summer visiting us and helping out. She was also supposed to take a Calculus class and couldn't, but that seems more based on bureaucratic red tape than anything we did.

She had been feeling a little ill for a week or so before she came up with us, and on Tuesday morning, we found her passed out on the bathroom floor. Not a good sign. After her symptoms continued to worsen, we took her to Rorysaurus and Little Monkey's wonderful doctor (we're lucky Blue Rose was under 18 or we'd have had no idea who to take her to), and after a visit on Weds, she was sent to the ER because she was in such pain that they were afraid her appendix was about to burst.

So, we went to Children's ER and then to her room in the not-quite-so-sick annex, where she protested being dragged to the doctors, insisted she was fine, and eventually started lying to doctors to see if they'd let her go home. Tell me, does she look "fine" to you?

Me neither. So, we made her promise to be honest with us, got her to eat some food and admit that she was in pain to the doctors (it let them put that in her chart as well as got her some pain medication) and let her come back home (her dad, who drove up okayed it). In four or five days of eating again, she felt fine, and the peds figure she has a very small ulcer that is acting up whenever she forgets to eat. They'll know to scope her next time.

Anyway, then, last weekend, we couldn't find Miss Manhattan. She didn't show up for work (unlike her), didn't call (unlike her) and didn't respond to email/facebook/texts/phone calls. I started to worry. Sure enough, she was hospitalized with a kidney infection and hadn't taken her phone with her. ::sigh:: Anti-bios and pain drugs later, she's back to her cheery New Yawk self, and has a new internship where she gets to finish up her RN this summer. Good news, but I'm starting, like I said, to think one of us has been hexed.

The end of MediCal and a wheelchair

2009-07-08T09:27:00.000-07:00

That's right, ladies and gents. California is broke and so they have cut Needlenoggin's MediCal. Not just reduced it (like they have done to everyone else) but cut it. Gone. No Rx coverage, no doctor's visits, nothing. Aren't they awesome?

If you'll recall, though, right before all of that, we finally got the wheelchair from Wheelchairs of Berkeley. We'd had a miserable time getting the chair from another company 45 minutes from here, so we tried to get it from WOB. We eventually got him measured by a nice lady, and the chair got ordered. However, we had folding vs folding back issues, and the piece had to be re-ordered. Fine.

So we went to go pick it up, and they'd ordered the correct piece in the wrong size. Rad. I asked what the @$@%@$^ had happened, and was told they'd have to re order the next one, and we'd get it in a few weeks. When we expressed our displeasure (I believe it was, "Come on! It has taken nearly a year to get this chair! How did you order the wrong size?"), we were told, no joke, that "I think everyone has to take some responsibility here."

What?!? I should take responsibility for the fact that you ordered the wrong piece, and not even in a size that was anywhere on any order (we've discussed 20, 19 and 18 inch chairs...In what size did they order the back piece? 16!). And we called to confirm the order of the folding back-chair BEFORE it was ordered! She just vetoed our order, and got the other one.

Anyway, Needlenoggin gave up, came home, switched backs off of his 10 year old chair onto the new green one (a long process if you've never done it before), and now we're waiting for the new back to come in, and we'll just do it again by ourselves.

I lost a friend this weekend

2009-06-23T10:23:00.001-07:00

Editor's Note:

The phrase "worst day of my life" has come to be something of a joke in our home. I mean, when we were dealing with flesh-eating bacteria, that was the worst day of my life. Little Monkey's first 5 hour cranio-surgery? Worst day of my life. Needlenoggin and Rorysaurus' fall? Yup. Worst. Day. Ever. After that, even more cranio surgery couldn't compare (although a CF diagnosis would have trumped the fall, I think).

Well, had this been 2006 instead of 2009, this would have been the worst week of Tuffy's life. We were in SoCal, doing the family thing, taking Rorysaurus to D-Land, and taking his best friend out for a birthday dinner. Tony, known to many friends as the "shady Asian" turned 28 on June 18th, and Tuffy and Tony's sister Dr. Jane all went out and had a nice grown-up meal. I stayed with the kids, which didn't make me cranky until Little Monkey started throwing up. I thought about texting and asking him to come home, but he only got to see Tony two or three times a year, so I figured I'd just ask him to pick up baby tylenol on his way home. They did one better when Dr. Jane wrote out an Rx for anti-nausea meds. They hit the friends' house we were staying at at ten-thirty-ish and hung out until midnight. Then Tony and Dr. Jane got up and left.

Friday and Saturday were just a lot of driving and dealing with family (AHHHHHHHHHHHHH), but we made it home. We were making all the "got home safe" phone calls, I in the living room and Tuffy in our room. All of a sudden, he calls out for me to hang up the phone and get in there. I do, wondering what on earth could have upset him this badly.

"Tony drowned." Quietly, Tuffy relayed all he knew of the story, that Tony had been leading Dr. Jane and some friends on a diving trip, they'd all finished and he'd gone back for a diving buoy. Once her equipment was returned, Dr. Jane realized that he wasn't back, and asked someone to go look for him. The guy dove under, and came back telling her to call 9-1-1. He was brought out of the water but couldn't be resuscitated. He was an experienced diver, and as of now, no one knows what caused the accident, and there's no date yet set for the funeral, because the coroner's office isn't done with their job.

I can't eulogize Tony the way that Tuffy can, so here are his thoughts in his words:

Hey, All. I don't normally post here, leaving that to my hard working Round Peg, but this definitely qualifies as a Mishap. Round Peg knows me well, knows it helps me to write, so she suggested I post about it here.

A mere two days after I had dinner with my oldest friend for his birthday, I got word he'd passed away in a diving accident. Tony was a very experienced diver, and I still just can't grasp how this happened. Here he is enjoying the ocean, probably still in high school at the time the photo was taken.

As Round Peg commented after she heard, short of a zombie attack or pirates on the high seas, this was probably how he wanted to go. It was way too early, but he died doing something he loved, with someone he loved. He was a marine biologist by training, and a mischievous prankster by nature. Part of me still expects another phone call apologizing for a joke gone too far, one big Tom Sawyer for which I can laugh, beat the hell out of him, and go back to normal.

Anyway, I wrote up what I'd like to say at his funeral, and thought I'd post it here with some photos added for flair.

Eulogy For Anthony

I first met Tony in the third grade. Mrs. Jamile at Anza asked me to show this skinny new kid around, teach him the ropes. One of the rules we had at recess was that as soon as the whistle blew for the end of play time, we had to freeze in place so the teachers could count heads, and the kids all made a silly game of it like freeze tag. Some of us would try and time it so we had to maintain awkward positions until the teachers said we could move again, sometimes falling over. I told Tony about this ahead of time so he'd know what to do, but when the whistle actually blew, he froze like the rest of us only for a moment. Then he looked over at me, grinned is crazy grin, and changed positions when nobody was looking. Then he did it again. Well I was stunned. I knew this kid would play with breaking rules forever, and get himself into a lot of trouble if I didn't try to keep him in line. So I spent the next 20 years trying to be a moderating influence on him, and he was ever the mischievous devil on my shoulder.

Tony brought me a lot of joy. No matter how upset or down I was, he could always get me to laugh. As another close friend of mine observed after meeting Tony just once, he was determined that life not be boring, and that was always fun to observe, and to share in.

I don't know if I was as entertaining to him, but I did my best to give what I could, and the most obvious thing for most of our friendship was related to our difference in size. Some examples:

When he took me to a Less Than Jake concert for my 20th birthday, Tony wanted to get right up to the front of the stage. For those of you who've been there, that means a very tight, suffocating press of people. I played bodyguard and literally spread my arms against the crowd to give Tony breathing space and let him see the show in peace, and in the process took a protesting bite on the arm from someone angered by my push-back. With Mike playing wingman, I'm sure some there thought Tony was a very wealthy trust fund baby with a pair of thugs guarding him.

When we were kids walking home together from middle school, I would strap his overweight backpack over the top of mine and carry both so that he wouldn't have to. He didn't force me to do this, but he did thank me with many a hotdog from the 7-11 we passed on the way. That scene, of me carrying both backpacks on a mile and a half walk, was echoed maybe a decade later on a backpacking trip. Yes, Tony was unprepared for the weight of his pack and the effects of the elevation, and though he started out carrying his own load, by the time we made it from the car to the lake five miles away, the only thing he was carrying was his AR-15, which made quite a sight. I'm sure our banter and the grin on my sweaty face was the only thing that kept passersby from running to the ranger station with stories of a hostage situation. We scared the hell out of some boyscouts.

He wore a firearm under his tux to my wedding. He lit fire to gifts from an ex-girlfriend and danced around it. He made explosives as a gifts. There are dozens of stories I could tell you about him, but we'd be here all day.

Tony wasn't perfect. His faults were plain to see and he didn't shrink from them; in fact he'd constantly challenge your interpretation of such things. But he was always there for me. Any time I needed anything he could provide, he came through, whether it was lockpicking services, a ride somewhere in the dead of night, or a place for my high school girlfriend, now my wife, to stay for a night when her parents had kicked her out and I was out of town. (Thanks for pretending not to notice your room had been stayed in, Jane.) He would demand payment in the form of food or doughnuts, but would come through even if none were available, if only with a loud and obnoxious pretense of irritation and inconvenience.

I never managed to get him to sign my yearbook in high school, and I never got him to visit me in Northern California after I moved away. He didn't like being mushy. He only accepted hugs from me on rare occasions. Aside from the love he showered on his dog, overt displays of affection were rare. One of the most surprising for me was when on the day of our graduation from High School, he asked me to take a picture with him. Now, this was Tony. I'd figured it wasn't worth my asking him for a picture, and then he asked me for one. I was honored.

Tony taught me a lot about how to enjoy life. I am who I am in large part because of him. I loved him like a brother since we were children, and I'll miss him for the rest of my life.

Thanks for reading.

Always a Little Monkey?

2009-06-12T08:02:00.000-07:00

So, after Little Monkeys uneventful eye appointment, we were looking forward to another few quiet and simple doctors' visits. However, if you're reading this blog, you know that the chances of that are slim to none.

So, Wednesday we headed in to his pediatrician's office for the needle-stick/general checkup/18 month well-visit. We biked the mile and a half there, and he sat patiently while I unloaded him.

He got weighed, measured, and stripped, and spent the first part of his visit running naked in the exam room. It was cute. Then his doctor came in and looked at him, back at me, down at his chart, and back at me.

"He's little." Now, when you see my son, he seems like a happy little chunker. Broad shoulders, fat cheeks, plump little arms and legs. He was always our big boy, weighing in at 20.5 lbs right before his second surgery in September. The problem? At 18 months, he only weighs 21 lbs.

How could this be? He hadn't gained any weight, any height, and it seemed his head was shrinking as well (although only by a quarter of an inch). Our pediatrician was befuddled, and we re-measured him. Nope. He simply hadn't grown since his surgery in September.

"Most 'failure-to-thrive' cases aren't a huge deal, and they fix themselves or there are endocrine or hormone issues," she explained. "The worry with him is that with all of his other issues going on, there may be more to it than that." What issues could those be? Well, our first option was aortic stenosis, which would have been due to Little Monkey's original heart condition. The doc told me to take him to his regularly schedules cardiologist's appointment, and then we'd go from there.

The next day, I headed in to Children's Hospital for his speech pathology appointment. He's a little speech delayed (although not as much as Rorysaurus was at this age), and doesn't point, clap or follow directions as well as they would like. Normal for a baby with the kind of trauma he'd had, they told us we should look into therapy and try to actively teach him signs. Fine. No real worries there, then. Everyone kept commenting on how cute and sweet my little boy was, and he is, but when I would mention the lack-of-growth issue, the doctors and nurses would all have the same response, "well, he is a pale little thing isn't he? Does he have a cough?"

Turns out that one of the leading causes for lack-of-growth in children is Cystic Fibrosis a genetic disorder of the lungs, that proves fatal, usually before the end of early adult-hood. It is most common in people of Caucasian and Mediterranean descent, and while newborns in California are now screened for the most common mutation, because of Little Monkey's unique genetic background, they thought it could be the other kind. I decided I don't want to think about the whole mess, and began praying for a heart problem, since that could be repaired and fixed with a very minor (balloon-o-plasty) surgery.

No such "luck" it seemed. His heart was fine, which normally would be a cause for celebration. I called the pediatrician with the news, and I could here her trying to figure out how to suggest, gently, that my son might have a condition that would take him from me very, very early.
"So, when do we test him for CF?" I asked.
"Do you just read my notes when 'm not looking?" she asked, and then got off the phone with me to schedule Little Monkey a lab test.

It got scheduled for the next morning at 8 in the morning, and then after that, we had the appointment with his neurosurgeon and plastic surgeon. This was turning out to be a very tough week.

We dropped Rorysaurus off at school at 7:30 am and hurried into the hospital to get settled in for the CF test. It just about broke my heart the way that the nurses would be so friendly and playful with him until they realized what he was there for, and then how sad it would make them. I found myself repeating "Please not CF. Anything but CF" over and over and over. The swabbed him with chemicals, aplied bandages and told us to take him out to play (they test for CF by collecting and analyzing sweat).

The whole time I kept thinking, "There is no way this kid has a fatal illness. I mean, look at him."

They removed the bandages and sent us across the street to the surgeons'. After a short wait, they decided that no, his head wasn't growing, but that no, there wasn't any impact on his brain. Yes, they were going to have to do more surgery, but no, it probably wouldn't be in 2009. "We want this next surgery to be his definitive one," Dr. Sun said. "We'll want to do it before he starts school, but not much earlier than that unless a pressure problem develops." Dr. Toth agreed, although he was less pleased with Little Monkey's bumps than Dr. Sun. "You want to have his head-shape repaired before he starts school because kids are vicious, and will tease him." Fine. We took a picture with their Spiderman statue on the way out, and agreed to come back in 3 months.

Anxiously awaiting test results, we headed home to get Needlenoggin to go do day-long important legal stuff. As we were trying to leave the apartment, the fire alarm went off. Building 6, two buildings away, had a small fire in it, and so the elevators were all shut down and we were to evacuate. Except, we couldn't evacuate Needlenoggin without the elevator. So, we waited, and waited, and waited while the Fire Department dealt with the fire, and finally got out on the road to the office.

In the middle of "important" legal proceedings, our pediatrician called. No CF. I thought I would cry, I was so happy. The last couple of days just sort of fell away as I hugged Tuffy. Yes, my Little Monkey was going to need more surgery and no, no one knew what was actually wrong with him yet, but now we could just start tracking his food, and doing blood tests, and I didn't have to think about the slow and terrible progress of CF.

BORP, Bikes and Bonding

2009-06-07T12:34:00.000-07:00

It is no secret that Tuffy and I love to ride our bikes. We each have a regular bike, then we own the big cargo bike:

which lets me carry both kids at once, and then we have a baby seat for Little Monkey and a Trail-a-bike for Rorysaurus:

We biked to Livermore for Easter one year (about 45 miles) and both I and Tuffy used to commute to work by bicycle (we're now close enough that he just walks, and I work at home). So, for us, one of the biggest changes on a day-to-day basis has been having to drive everywhere. Even just heading to our neighborhood Trader Joe's (a little under 2 miles there and back) now has to be done by car if we want Needlenoggin to be able to join us.

Then Tuffy discovered BORP, the Bay Area Outreach and Recreational Program. BORP provides physical activities for people with disabilities, and has power-wheelchair soccer, manual wheelchair basketball and goal-ball for the visually impaired. (Check out the goal-ball video, it is WILD). They also have an adaptive-cycling program that lends bikes and trikes to the disabled. This allows one blind member we've met to hop on a tandem bike with his friend and tool around the bay trail, and lets parents take their severely disabled children, who otherwise would never have been able to experience bicycling, through Berkeley's Aquatic park and on rides by the water. They even have volunteers who organize youth-rides every week for kids with mental disabilities or amputations or cerebral palsy or paralysis. I'm literally brought to tears every time I think about the joy they bring those kids and their families.

BORP also lends handcycles and adaptive tricycles to adult members, and so we took Needlenoggin out to the center, just 2 miles from our home, and had him take a look at the cycles. We weren't sure how he'd react, since he isn't a big fan of the outdoors anymore, and were pleasantly surprised when he loved it. Because of the volunteers at BORP, the five of us were able to go on our first bike ride together, ever.

Since becoming a BORP member, Needlenoggin has lost 30 lbs, gained some strength in his core, and has better balance control. His awareness of his lower limbs has also improved. As importantly, it is exercise he looks forward to, and he tries to get out once a week with Miss Manhattan. However, BORP is only open a few hours a day a few days a week, and getting there between doctor's appointments and hard mornings is sometimes very difficult.

So, we've decided that Needlenoggin needs a trike of his own, and that we need to find a way to give back to this fantastic group. In light of that, we (Tuffy, Needlenoggin and I) are registering for BORP's fundraising Revolution Ride. On Saturday, September 26, Needlenoggin will strap himself into a tricycle adapted for paraplegics, and ride 10 miles to raise money for a great cause. Yes, you read that right, my paralyzed brother is doing a charity bike ride. He knows he'll need to train, and is willing to do so. Tuffy and I will be taking the kids.

We've set up a series of links on the home page of this blog where you can email us or buy merchandise from our cafe press store to help raise the money needed for the registration (we get a third of the selling price). The cafepress items show a bunch of items with designs on them. Those are only examples...every product can be bought with any of the images shown, OR pictures from the ride itself. Just email me if you want something different than shown. Also, we're going to send each sponsor a postcard of Needlenoggin crossing the finish-line, with special thank yous for larger gifts.

So, click on over to the store or donation site, and thank you in advance:

A New Wheelchair (sort of)

2009-06-05T07:43:00.001-07:00

So, most of you know that we've been waiting for months on a wheelchair for Needlenoggin. First MediCal denied it and then the first vendor wouldn't just order him a chair and then it got "deferred" by MediCal again (without them contacting anyone). Anyway, so it finally got approved (except for the seat depth, but whatever) and it got ordered.

And it arrived. I went, picked it up and brought it home to show Needlenoggin, who was thrilled. It wasn't rickety, nothing was falling off of it, and the color (called "Toxic Green" was as terrible as he had hoped. :) There were a few adjustments we'd have to do (changing to the bigger 26" wheels and bolting on his head-rest), and we were all geared up and ready to take it in and get it worked on. Had the whole day open. Then we realized that the chair had no seatbelt. Odd, but we knew the vendor store would be more than happy to put one on while they were doing other adjustments, and I was totally fine with paying for one.

Then, we tried to fold down the chair (an important thing, since his two attendants take him places in their tiny coupes, and it needs to be break-down-able). When we'd first ordered a chair, we'd been looking at the Quickie GT:

The description says "open frame design" (note the lack of bracing bars underneath the seat). The people we talked to loved how easy this was to get in and out of a car, so we figured we didn't need the folding back on it, due to the S-curve. It may have even fit in my father's tiny car.

However, what got ordered (because it is cheaper and MediCal is like that) was a Quickie GPV:

This is the same model of chair Needlenoggin has now, which is a snug fit in smaller cars even with a folding back. When it had become apparent that this was the chair we needed, I'd called and left a message at the wheelchair store asking that they edit our (as yet un-sumbitted) order to make the back a folding one. (Don't get me started on how there are 2 types of chair, rigid and folding, and how rigid chairs can have folding or non-folding backs. Just do not get me started on that semantic mess). Just to make sure, I called to confirm a folding back (because leaving a message isn't good enough, I know). The office person looked up the order, confirmed the folding back, and I hung up.

So, when I realized the chair, the only one MediCal wil ever pay for, wasn't going to fit in ANYONE'S car, I was miffed and worried, and Needlenoggin and I dragged it into the shop yesterday. We explained how we were going to need the minor adjustments and a seatbelt, but that our biggest concern was the back not folding. The chair fitter looked at me and said "you said you didn't want a folding back." I explained that we'd changed our minds and had talked to some other people at the office to confirm (since she hadn't been available on the order day) and she told us that fixing this was going to be expensive, but that there was nothing they really could do. Oh, and that we'd now now "not to do that again," whether that means talking to office personnel or changing our minds as we learned all about wheelchairs for the first time I don't know.

So, we left the new chair at the store while they "call Quickie" and see what can be done. The folding back is just a different series of pieces bolted onto this frame, so it shouldn't be too big of an issue to fix...it could just cost them $50 (retail, the back is about $100). On my way out, just to make sure, I asked the receptionist to see the order. It says "folding back." There's been an error here, and all I want is to get Needlenoggin into his new chair before a) this old one I've pieced together breaks and b) the anniversary of the accident rolls around.

::sigh::

Little Monkey, 1 down, 5 to go

2009-06-05T07:27:00.000-07:00

So, this week I piled Little Monkey into the bakfiets (Dutch Box-Bike) and took him out to the opthamologist, dreading the whole arduous task of detting his pupils dialated, holding him still and letting the doc do an exam. However, it only took about four minutes once the doctor came in for us to be totally done and over...no drops or anything. He used a pen-light to distract Little Monkey, and then talked soothingly to him, asking him how "big doggies" had crept into my son's eyes while peering through a magnifying glass. Little Monkey just stared at him.

Verdict? No intracranial pressure (at least not enough to be pressing down on the optic nerve). Yay!

I LOVE Children's Hospital. I love how sensitive the doctors are (both to the kids and the parents) and how calming and reassuring they are. Everyone should get care this complete with doctors this nice.

Oh, and on the way home, we found a new store. It is right on the corner of 52nd and Telegraph, in the Walgreens shopping center next to the Deli. Ruby's Garden used to be a flowershop and kids' boutique, but now it is a CUTE little kids' store, full of organic clothes, recycled-bpa-free plastic toys and a great assortment of used stuff. The flower room in the back is getting converted into a birthday party room (I'm very tempted to hold Little Monkey's party there in December). If you're in the bay, please check them out...you will not be sorry!

Here are the two trucks we bought there (barely used, and they were less than $15 TOGETHER), (we also bought a fire-fighter book for Rorysaurus and a Tshirt she'll have to grow into). (I'm pretending that my son and daughter will share the fire-truck, but at least I know I'm dreaming, right?)

Very cute.

So, on Tuesday Little Monkey has his general 18 month check-up and shots, on Wednesday he sees both the speech-pathologist and the cardiologist (since his appt got bumped before) and then Thursday he sees the Neurosurgeon/Plastic Surgeon combo again for the first time since his 9/2008 surgery. I'll update after all of those are done, unless we have pressing news.

"Happy" Jetting, Indeed

2009-05-28T08:21:00.000-07:00

So, Needlenoggin had a seat on a 12:30 flight out of our local airport to go to SoCal yesterday. He was going to go visit my parents for a few days and head out to the Abilities Expo. It was going to be a nice break for everyone involved.

We printed out his boarding pass in the morning, and couldn't indicate that he had a bag to check and a wheelchair to gate-check on the form, so I called. Having cleared that up, I was told he'd only have to ask for help getting his bag to the bag drop and getting through security. He's flown once now in the chair, and we thought we had this down. So, the boarding pass says "Boarding begins at noon." Cool.

We drove to the airport, and the area near the Jet Blue terminal was under construction, so we head to drive 1/3 the length of the airport to get to a curb. Fine. Then, we had to wait for the disabled drop-off spot as a limo and a MILITARY vehicle (neither discharging disabled passengers or with placards, just to make it clear), unloaded in the spot first. Fine. Once we got in the spot, we got Needlenoggin out and into his wheelchair, and realized that I couldn't park (loading zone, dontcha know?), but that he had nearly a block to travel to get his bag to the Jet Blue counter. It was now noon. Hmmm.

We asked a few of the security people what to do, and TWO of them promised to run to Jet Blue and get a skycap. Then they wandered off. So, I attached his bag to the back of his wheelchair with a bungie cord, gave him a hug, and he lugged his bag and carryon all the way to the counter. He handed in his bag at 12:09, and explained that he'd had to pull it all the way here, which hadn't been easy, and that his plane was leaving at 12:30. There wasn't a huge long security line, and the people at the counter told him (an exhausted, frustrated kid in a wheelchair) to "hurry."

He did. He got through the security check-points, and then ALL THE WAY to his gate by 12:22. Not bad, considering he isn't a racer, and how much work pushing is on carpet. And you know what? They'd left without him. The plane had left at 12:20, even though he'd arrived and turned in his luggage and should have had an escort (we were promised one the last time he flew Jet Blue). So, they'd known he was on his way, had taken his luggage and put it onboard and LEFT EARLY...

Let me make this clear...had someone been able/willing to help him with his bags (or had there been a way to drop him off next to JetBlue), he'd have been fine. Had they helped him through security (a longer process in a wheelchair that involves getting wanded), he'd have been fine. If someone had been dispatched to help him get to his gate across the terminal quicker, he'd have been fine. If the plane had left at its designated time, or even only 5 minutes early, he'd have been fine. IF THE CHECK-IN PEOPLE HAD JUST CALLED THE GATE AND LET THEM KNOW HE WAS COMING, he'd have been fine. But they did none of this.

Ad what was their solution? "The next flight with open seats is at 5pm. I'd suggest you hop in your car and drive to San Jose airport (an hour from us), and get on the 3:45 flight there." No apologies. When he explained that he had no car and couldn't drive (and that he wasn't good with any kind of hopping, really), he was told to make up his mind about whether he was getting on the 5pm flight or not.

Now, I was at home, revising my LAST paper of the semester that needed to be submitted by 2. He calls, and we get into this whirlwind, and realize that by the time I get done, get him, get him home and calmed down, it'll be time to go back to the airport, which he isn't willing to do. He wants to take a cab home and cancel his trip altogether. I want them to put him on the next flight.

Finally, my parents get on the phone with the head person at the airport for Jet Blue, who offers to buy Needlenoggin lunch while he waits for 5 hours at the airport. He consents, plays his DS for five hours, and gets on the plane to SoCal.

I'm FURIOUS. This is no way to treat any passenger, much less a disabled one who got to the plane on time AND requested assistance. If you'd like to help me vent my frustrations, here is the contact #:

JetBlue Corporate: 1800-Jet-Blue
The "Report a Problem" web-page is here

Or, if you want to send it the old-fashioned way:

Jet BlueCorporate Headquarters
118-29 Queens Blvd.
Forest Hills, NY 11375

and

Jet Blue
c/o Oakland Airport
1 Airport Drive
Oakland, CA 94621

They ask for some basic flight info, so:
Confirmation # E511BQ
Out of Oakland
To Long Beach
Yesterday at 12:30 (!!!)

In their Bill of Rights it says (in the section on over-booking) that passengers "who are involuntarily denied boarding shall receive $1,000." I think his flight home should at least be free. ::grump::

Morons, MediCal and Medicine

2009-05-20T11:48:00.001-07:00

"Hi, we have a question about a TAR request for medication. We don't know who my brother's worker is, though."
"Sure, here's the county office number."
"No, we've called there, and they've told us that since he is on SSI, he no longer has a county worker. I'm trying to figure out who is handling his TARs now."
"His worker would be based out of the county office."
"But he doesn't have a worker..."
"That's not what you said!"
"Sorry, let me try and clarify. He doesn't have a worker because..."
"That is NOT what you said when you called!" (starting to sound riled up and panicked). "You said you didn't know who his worker was, not that he didn't have one!"

::click:: I just couldn't take anymore stupid. It was leeching into my brain.

Eventually, we got the TAR number, found out the meds had been approved on 5/5, and called the pharmacy, only to be told that the meds in question were discontinued. I'd just ordered them (with my money) from the manufacturer earlier that day. When I tried to argue, she said, "Our wholesaler says they no longer exist, so they no longer exist. You can't have them."

Now, Walgreens had been willing to order this med last month when it was self-pay, but as soon as it gets approved by MediCal, who pays less than I would, we can't have it? Fishy. I'll be getting the manufacturer and Walgreens on a conference call today.

On the plus side, MediCal SEEMS to have approved Needlenoggin's wheelchair, which would be fantastic. They didn't approve the depth of the seat, so I'm afraid it'll get kicked back to processing (again)...but it would be so nice to get him his official wheelchair before the anniversary of the accident!

Other Friends and Family

2009-05-20T09:20:00.000-07:00

First, the bad:

Needlenoggin's attendant and friend, Miss Manhattan:

had her apartment in Oakland (far, far away from here) broken in to. The thieves ate food out of her fridge (?) and stole her laptop, which had her 20 page RN final on it. Yeah, sucks.

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My Godfather, Tuffy's uncle, lives up here in NorCal. He was home, doing some minor home improvements that include hauling junk to the dump, and was trying to load heavy, wheeled items into a pickup by himself. Long story short, he injured his right shoulder, broke his left arm, banged up his head and shattered his right knee. It'll require surgery.

His wife was at work, his phone was in the truck, and he obviously wasn't going to walk for help. Luckily, a neighbor heard him calling, and got the fire department over. Now he's home recuperating with company from a friend, but he's having to hop in a walker and swing from a rope wound through the rafters, and he looks mightily uncomfortable.

Worse, the poor guy, who loves to garden and work in his vineyard, can't get out of the living room/kitchen area. But, we still have Needlenoggin's powerchair! I think we're taking it over this weekend to see if it'll help put a smile on the guy's face. it should be able to go out on dirt and gravel, and allow him to travel over the grass and get out in his backyard. I hope this is a good fit.

In good news:

Congrats to my cousin and two of Tuffy's siblings who are graduating from college, as well as my fellow Student Parents from Cal Berkeley. My Godmother's son graduates this month and gets his Lieutenant's commission in the army, and his wife graduates with honors from the same school.

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Congrats to Lisa (she lived below us pre-accident) who just got a cool new job. Awesome. Two of our other pre-accident roomies are having a baby this summer as well. Yay!

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Congrats to an "internet friend" who won her primary race for public office!

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Poor Little Monkey

2009-05-14T08:54:00.000-07:00

My poor little son. He fell this week (of course, the week that Tuffy is gone for work) and split his lip, and then is breaking two molars as well. He's had a 101/102 fever off and on all week, and cries for HOURS, nonstope, regardless of Tylenol, benadryl, food, milk, what have you.

Later this month, he goes in for his semi-annual echocardiogram to check on his little heart problem. And then, June is coming up.

Little Monkey has his 18-month check-up in June (shots!), but that's no more of a big deal than all little kids go through. However, he has a big cranio-facial panel (including checking out his teeth, which may be a little bit off) in early June. I was all gung-ho for this to be another easy, "he's fine!" appointment. However, look what we have here (ignore the totally rad hair he has going).

Or there's this one, with him and my mom:

There are actually bumps on both sides of his forehead, but that one on his right (the left side of the photos) makes it pretty prominent. ::sigh::

Blankets

2009-05-05T09:59:00.000-07:00

Wow, a couple of good-news posts in a row!

When one of my mother's friends heard about Needlenoggin and Rorysaurus' accident, she felt compelled to do something. So L. N. spearheaded a movement to get blankets made for the two of them. She wanted to make a twin-size duvet for Needlenoggin and a kid-blanket for Rorysaurus, and asked for ideas.

For my daughter, of course, it was easy: Batman. L. N. was surprised, but pleased, and told us she had just the fabric for it. For Needlenoggin, we took a sheet and laid it out on the floor, and then had Rorysaurus dip her feet in white pain and run all over it. We figured he'd like that best of all.

Well, in April, the blankets arrived.

We sat Rorysaurus down in her Batman chair, with her Batman doll and her Batman slippers, next to her Batman castle (yes, there's a theme). We then blindfolded her, and tossed the blanket on her lap:

Then she opened her eyes. Oh, was she pleased! The Batman on her blankie is almost as big as she is, and it is awesome:

And look at the flame-trim! Too cool.

Then it was Needlenoggin's turn. First, we has her sign it (the artwork was hers, after all):

Then we drug it over to Needlenoggin and tossed it on him in bed. He's a fan, but wishes I and my camera would go away. So, instead of seeing my brother, you get a picture of my Little Monkey on the blanket, after we've washed the dog-footprints off of it:

Each blanket, by the way, has a small patch attached of Psalm 9:10:

I'd have gone with Isaiah 40:31, personally:
"They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run and not be weary; and they shall walk and not faint."
I want him walking and running (and not fainting would be good, too).

Thank you.

Introduction to WellSphere

2009-05-01T21:52:00.001-07:00

As Mostly Medical Misadventures & Mishaps was just added to WellSphere (a health community full of doctors, yoga masters, and caregivers), I thought it would be appropriate to introduce myself a bit to the new readers.

I'm Round Peg Inna Square Hole, or Round Peg for short. I'm 25 years old, married to my high-school sweetheart Tuffy, and we have two children. Rorysaurus is three and a half years old, and Little Monkey is nearly one and a half. We live together in the SF Bay with my younger brother, Needlenoggin, and I'm a full-time graduate student working toward my M. A. in teaching. I plan to be ready to teach middle school when Little Monkey is ready to head off to kindergarten.

Mostly, however, I am a full-time caregiver. It is not what I had planned to be, and not what anyone whose ever met me would assume I'd become, but it is what I do twenty-four hours a day, none-the-less. No one is more shocked by it than me.

My first care-giving job was when my grandfather died. My grandmother was legally blind and unable to take care of herself, and so I moved into her home in 2000 during my senior year of high school in order to cook meals for her and keep her company. I was happy to spend the time with her, and got to know her wonderfully well, listening to her stories of the Depression, World War II and my mothers' childhood. I'd have stayed there, but I needed to go off to college, so my grandmother moved in with my parents and I headed off to school.

I married, earned a scholarship to UC Berkeley and moved to the Bay. My daughter was born in 2005, and she was a colicky screamer. She had acid reflux and screamed twelve hours a day, which wasn't what I'd expected, and she required a lot of care.

We did a semester with no sleep, she came to class with me, and we got through it.

On Mothers' Day in 2007, I graduated with my degree in English.

I was 3 months pregnant with Little Monkey, and was ready to take a semester off. We moved into a nice apartment near Lake Merritt in Oakland, and settled in for what was supposed to be the easiest year of my life.

When Little Monkey was born in December, he was diagnosed with Craniosynostois and a heart defect.

His story is here if you want to read about it. He required a craniectomy, and had a five-hour surgery at seven weeks of age.

My life sort of revolved around the little guy until his incision healed up and the swelling went down, and then I enrolled in my graduate program. He'd recovered wonderfully, and our only worry was that he'd need another surgery somewhere down the line, and he was such a happy baby that caring for him in his injured state wasn't very different than caring for a healthy infant, except the emotional drain that I felt due to the constant worry about him.

In July, two weeks after he'd been given a second surgery date, the exterior stairs of our apartment collapsed, dropping Rorysaurus and Needlenoggin three stories to the pavement below. He broke his back in several places and requires a 24 hour caretaker. Because of state budget problems, there was no funding for anything except a nursing home for him, and it took 6 months to get him to a physical therapy appointment. He came home with Tuffy, Rorysaurus, Little Monkey and I, and I started doing his stretches, exercises, medication regimen and the never-ending battle with the State to get him a wheelchair (none yet).

Read our original posts about this here. When he came home from the hospital, he needed help with everything, from bathing and weight shifts for his skin, to other medical procedures. Getting him through the day and getting all his medications into him every day became my full-time job, and it is round the clock. His mental and emotional state was fractured when he fell, and his memory has disintegrated, so he'd wake at odd hours, disoriented, and what sleep I was getting with a PTSD toddler and an infant disappeared.

And then, in September, Little Monkey had his second surgery. It was shorter, and he came out of it fine.

I'm still my brother's care-giver, and I take care of my two little kids. Rorysaur is nearly four and goes to Preschool during the week, but Little Monkey is my constant companion, coming to doctors' appointments and to the Social Services office multiple times a week. Tuffy deserves credit, and a lot of it, for being the one level head in our home, as Needlenoggin is still recovering and I'm constantly frazzled, exhausted and short-tempered. He's been my rock throughout this.

So, there's an introduction. Please, use the comments section to leave advice, tips, questions or whatever. Fell free to catch up on the previous posts, as well. God bless.

Firemans' Dinner Dance

2009-04-27T06:26:00.000-07:00

Right after the dress got delivered on Saturday, Needlenoggin's friend and attendant, Miss Manhattan, came over. She helped him get ready and walked the dog while I fought with my hair, bathing the kiddos and all the usual big-event prep. My folks got ready at their hotel while Tuffy arranged the drop-off and pick-up of the kids with our babysitter, Ex-Floridian and his girlfriend Spice. At last we were dressed and ready to head out.

We arrived at the church and were greeted by Needlenoggin's work-buddy, whom I will call Crackdown. We presented our tickets and came inside to find a silent auction going on to support the random Acts program, as well as firefighters serving drinks behind the bar. We spoke to Larry Hendricks, one of the organizers* of this big shindig, and then got Needlenoggin comfortable at the table we'd be eating at, away from all the hustle and bustle of the crowd. My father got a few pictures before the program started, including one with Needlenoggin and our very proud Mama.

Then we got a few with Needle and Miss Manhattan.

And Miss Manhattan and Little Monkey

Then Needlenoggin's other ladies arrived. First, Dr. K-, and then Needlenoggin's ICU nurse. Dr. R- was willing to come out from her conference, and offered to drive the 4 hours, spend 3 with Needlenoggin, then drive back 4 hours to go back on shift, but we all told her that was crazy. So, Dr. K- asked Needlenoggin's favorite (and most frequent) ICU nurse to come instead. When she arrived, Needlenoggin and I realized that we had melded Dr. R- and this nurse into one person, and he vaguely remembers asking her where her glasses went back in July. We've affectionately named her thing 2. So, Thing 2 wasn't at work the day he showed up at the hospital a few weeks beck, so this was the first time she'd seen him since they wheeled him up to the 5th floor TCU full of tubes and flat on his back. She was, shall we say, pleasantly surprised to see how well he was doing.

Needlenoggin and his dates:

During dinner, Ex-Floridian and Spice brought Rorysaurus and Little Monkey to the church, and we seated them in comfy laps around the table:

Jealous, Little Monkey made a move for the doctor and nurse himself:

And Rorysaurus got to cuddle with our neighbor, friend and sometimes-nanny, Elfay:

Anyway, dinner went well and then they started the tribute to the Oncology ward at Children's hospital. If you want something to make you cry, that'll do it. I've said before how much the kindness of the Children's nurses meant to us, but those are such good, strong people that take care of cancer-kids day in and day out. While they were doing their presentation, Needlenoggin, Rorysaurus and I crept to the back of the hall. Then we waited while the guys from Engine 16 recounted their memories of the call that day, bringing us toys and a wheelchair and how touched they were by Needlenoggin's relationship with my daughter, and mine with him.

They showed pictures of the two of them before the accident, her visiting him in the hospital, and of the accident (including the one of them moving him from out from under the stairs) while they talked, and then called us down. Rorysaurus hopped onto his lap, and I pushed him down the center aisle with a spotlight on us.

The guys came down the stairs from the stage, surrounded Needlenoggin and thanked him again for his heroism. they re-presented him with the plaque he'd received in the hospital, and shook his hand.

Now, those of you who know Needlenoggin know that he was a very quiet, shy guy even before the accident. This has only become more apparent. However, somebody needed to talk and say thank you, so they asked me to speak. :) Hey, if they insisted, who am I to say no?

I thanked them the best I could, trying to put all that these people have done for us and meant to us into less than five minutes, and then I told them a secret.

When we'd come to the fire station in October, on Halloween day, they were the first outing we'd done since the fall. It was a TREMENDOUS amount of work, for both Needlenoggin and I, but we managed to wrestle his big electric wheelchair out of the car and tie on his firetruck "costume" to go see them. And they were SO happy for him, so happy to see him up and moving around in his chair. And they told him that next time he came to visit, they wanted him to walk through the front door. And you know what? They were the first people to use the word "walk" without the phrase "you'll never" in front of it. And they were so pleased with all of his progress, including his weight loss and transition to a manual chair. So, for the last 6 weeks, we'd worked on a chance to give something back to them, and we'd kept it a secret. My parents didn't know, his doctors didn't know, and none of the firefighters knew.

So, once the speech was over, I reached into his wheelchair bag, and removed his polio crutches...

...
...
...
...and he stood up.

Now, he's wearing leg-braces under his pants and we've done NO exercise for days because of how much this wears him out, and he can't really do more than get up and turn around, but there you go. He managed to turn his body towards the firefighter and say thank you, and was smothered in hugs for his trouble.

We'd wanted to give the firemen who saved him, who encouraged and helped him, a happy memory to go along with this story. I like to think we did.

Then, they introduced the band, and everybody got on the dance floor.

Rorysaurus got to dance with all the guys from Engine 16:

And even Needlenoggin got in some good moves:

Oh, and the Albuquerque Firefighter's Random Acts group (inspired by our Oakland group) gave him a shirt, so now he's got LOTS of firefighter paraphenalia.

The dinner was amazing, and I am humbled and touched by these wonderful people and all they have done for my brother. I mentioned it in my speech (will get a video of that at some point), but I'm amazed that these men, who do heroic acts and save lives on a daily basis, have gone so far out of their way to honor and encourage Needlenoggin. Truly, truly amazed. These men have been a source of inspiration and hope for both Needlenoggin and Rorysaurus since the day of the accident, and we are without a way to express our gratitude.

Thank you, thank you, thank you, to all of the Random Acts people, all the volunteers, all the strangers who came up to my brother, in tears, and told him how moved they were.

We did forget to get pictures of Tuffy and I, Tuffy and the kids and I, or the five of us my mom and dad together. I don't think we got a single photo of Tuffy all decked out at all, since he was playing camera-man, but that's not too shabby, I think.

-------------------------------------------------------------------------------------
He prefers anonymity, but that's because he's a very sweet, humble guy who doesn't want the limelight taken away from the fire-fighters. I both get and appreciate that, but he and his co-organizer Cindy Chin make the whole Random Acts thing possible, so he'll have to pardon the shout-out

Fireman's Gala (clothing episode)

2009-04-26T09:06:00.000-07:00

As we were gearing up for the Oakland Firefighters' Random Acts of Kindness dinner and dance, it occurred to me that Needlenoggin didn't own a suit, and that my one fancy dress didn't fit anymore (yay for losing weight, right?). This was going to necessitate shopping and alterations.

Needlenoggin has never been a particularly fancy dresser, so we didn't have any idea what size he wore or his measurements. I decided that the best thing to do would be to head into a store, get him measured, then find a suit the right size on Ebay, and get it tailored to fit him. So, while listening to the radio, I hear an ad for Cassara's Fine Men's Wear in Dublin, California. They were remodeling, and the ad promised *fantastic* deals. I figured I could go there, get him measured, maybe buy him a tie, and eye-ball pretty clothes for Tuffy for when we have money to spend.

So, we drove out there in February, and were greeted by the family that owns the store, a father and one of his sons. Tony, the father, is from Italy, and opened this store to sell wonderful clothing at great prices, and he does the alterations himself. He pulled out a bunch of different sizes and styles, found one that Needlenoggin really liked, and put the jacket on him, in the chair. Then he started drawing all over the jacket with tailor's chalk, telling us that he's done alterations for wheelchair users before, and that the reason the jacket seems tight across the back is that in a chair, your arms are forward, instead of down at your sides. He talked about moving the arms of the jacket forward and shortening the length (so it doesn't get caught in the wheelchair wheels).

All the time he was talking, I was trying to figure out some nice way to tell him what we could afford, and then told me how much the alterations were going to be. They were more than our meager budget for the suit. I guessed at that point that what I'd do was go buy a cheap suit online, and come back with it to have it altered, since that was going to be necessary anyway. As I explained what the suit was for, and what Needlenoggin was being recognized for, Tony started to smile. I told him that I'd love to have him do the alterations, but that his suits (wool, cashmere, silk) were FAR better quality than we could afford, and that I needed something from a Ross, especially if it needed to be altered.

Tony told me the price of the suit, and then what it was during their *fantastic* sale. Still crestfallen, I started in on my "thanks-but-no-thanks", and he took it to the counter, half ignoring me, and started applying other discounts to the suit. What the price finally came to was barely more than the original estimate for alterations, and I started to protest, knowing that the total price was about an eighth of the original cost of just the suit. Tony didn't say anything, and rang us up. I began to cry a little.

I told Needlenoggin he was going to have to get married in that suit.

When we came to pick up the finished suit, it was magnificent. The arems were forward so that the jacket looked smashing on, and the coat was short enough that it didn't interfere with the chair. "I kept the fabric in the coat," Tony explained, "so when you start walking, you come back here and I'll lengthen it out again for you." ::sniffle::

Then we opened the coat:

Needlenoggin's full name was stitched inside.

Getting ready to leave, Needlenoggin stopped to feel at the lovely ties in the display, and I told him we could buy him one of those, if he'd like. He showed me this marvelous black and green tie, and talked about how awesome he thought it was. Tony heard us, and told us he picked out the fabric and made that tie himself. We were amazed. Then, he pulled it off the display, looped it over my brother's head, and said, "Happy birthday."

We're getting photos of Needlenoggin at the firemans' ball framed with a "thank you" ready to take out there.

Then there was my dress. See, I'd bought a dress off of ebay for Christmas:

It was still a LOVELY dress, so I wanted to wear it again. However, there were two minor problems...the ties on the dress, which I always felt were unnecessary, were tearing off (thank you, toddler-of-mine), and I'd lost 15 lbs, so the dress was too big. On a recommendation from a friend, and Berkeley Parent's Network, I dropped my dress off at a local tailor/drycleaners to have it taken in an couple of inches, and have the straps pulled off.

This was on Monday, and I said I needed to pick it up no later than Saturday morning, because the day was going to be hectic at best. I was assured that this would not be a problem. On Thursday, I stopped in, and was told that the dress wasn't ready yet, but might be done Friday. If not, it would be ready at opening on Saturday morning. I reminded myself that I should always factor in an extra day (say that I need it on Friday if I need it on Saturday), but what ever, I went home.

Saturday at noon, between baths for the kids, I went back to the tailors. Still no dress. They hadn't even started on it. In a panic, I started to cry, whereupon I explained the ball to the owner, and my frustration that this wouldn't be ready, even though I'd check on it two days earlier. She told me that this was highly unusual for her shop, and offered to do it herself, right then. "Go home and dress your kids and your brother. I'll do it right now and have it brought over." She did, indeed and did a marvelous job. The dress arrived at our place around 3pm, brought by her husband and the shop's co-owner. Complimentary.

I've NEVER had a company do so much to make something right, and I want to fully endorse Norge Cleaners in El Cerrito as a great shop run by kind and helpful people. We had a little panic there, but they made it good, and for that I am thankful.

(Next post, you get to see how we look in our finery. :) )

"Little" Lies

2009-04-24T08:47:00.000-07:00

So, when I went to pick up Rorysaurus from her preschool on Wednesday, she was a babbling mess of incoherence. Something about a fall, a baby, the Oakland fire department and birds. So, I asked her teacher what on Earth was going on.

"A baby bird fell out of its nest in the tree above the house. I think it is hurt, it is very obviously hungry, and the kids have been fighting over who gets to take it home. It is probably going to die, since it is so small."

I turned to Rorysaurus. "The baby bird fell, just like me and Needlenoggin. It broke its neck, Mama. Is it going to need a wheelchair? Can we call the fire guys to make it better?" She was sobbing by this time, and looking into her tear-filed big browns, I knew what was about to happen.

"First mom to say 'yes' can have the thing," the teacher informed me.

Alright, alright. So, I went over to see the Easter basket where they'd stored the thing. Here's what we saw:

It WAS little. Poor little thing. As I reached into the basket to move some of the kleenex, the baby opened up its tiny maw and started begging for food. I looked at the teacher, smug in her assurance that this was now my problem, and then looked over to Rorysaurus, who was barely able to contain her concern.

"Fine."

So, we loaded into the van, and drove to our local vet hospital. We waited in line, and asked the nurse what we should do with this little thing. She peered into the basket. "Oh, he's tiny! I'm not sure..."

"Little is a girl!" Rorysaurus interrupted. "She fell and got owies but Mama is going to help her get to the doctor and back to her Mama."

The nurse glanced at Rorysaurus. "I can give you the phone number for the wild animal hospital. It is in Walnut Creek (about a 30 minute drive). They might be able to help her"

I sighed, took the phone number and went home to call and let Needlenoggin know he was going to have to baby-sit.

As I went through the messages, I scrounged around for finely-ground meat to feed this thing (we're in an apartment, so I had no bugs to grind up). "Poor Little," whispered Rorysaurus, staring at her little friend in the basket. "Mama will find you some food." Mama found ground crab-meat and chicken broth (does that make Little a cannibal?" and served it in a syringe. After the first gulp, Little was much more vocal, interactive and awake, even opening her eyes when she peeped at my daughter.

We finally loaded Papa into the car, and headed off to the hospital, Little peeping along happily the whole way. Rorysaurus wanted to hold her on the drive, but I could just see her dropping the poor thing, so I let her hold the basket while we packed everything in, and then buckled the basket in to Needlenoggin's seat-belt.

We drove the whole way there with my ecologist husband and I chatting back and forth about how, while not our plan for the day, this seemed like a good way to impart lessons about wild animals, caring for nature and helping. Rorysaurus babbled happily about helping her friend, and kept telling us how the doctors would make Little better.

Then we arrived at the hospital, and Rorysaurus carried Little in.

A quick look by the vet allayed my fears. "That one is just old enough that he ("she!" shrieked Rorysaurus) should be alright." Then he took the bird to the back and came out to tell us that Little was a House finch, and would look like this when she grew up:

"Cool," I thought. Then the man vanished to the back to get us paperwork.

When he returned, I knew we had a problem. "The little finch has a...fractured femur," she started, intentionally talking over Rorysaurus's head. "Because of how young she is, we can't do anything more than giver her a shot to make the pain go away, and put her down."

"No, no, no! You put her up in the tree! Up in the tree so her Mama can find her. Use your Snort!" This in reference to Rorysaurus's favorite book Are you my mother? and nearly broke my heart.

"There's no way to set that?" I asked. He shook his head. Feeling like I was about to cry, I asked, "Can she come back out so my daughter can say 'goodbye' to her?"

This is apparently not a common thing to do, but they brought her back out in the basket, and we said our adieus.

When Rorysaurus realized we were leaving Little at the hospital, she began weeping. "No, I want her to come home with us!" I admit, I thought about taking her home and trying to feed her asprin and crabmeat until she was healthy, myself, but I knew how bad a busted leg must have felt.

The man saved me the lie by telling Rorysaurus they were going to take care of Little, and once she was better, they'd take her to her Mama.

I accepted that, took her home to color in pictures of Little (google is an amazing thing), read her bird book and cuddle. We saw Little's mother the next day, when we dropped Rorysaurus off, and could hear all her brothers and sisters peeping away for food.

"Is Little back home yet?" Rorysaurus asked hopefully. "Or is she still in the hospital?"

Looking over at my poor little girl, I told her the truth: Little was still as the hospital. "But, as soon as she's better, they'll bring her right back here."

Trust

2009-03-26T16:45:00.000-07:00

Especially when, as in Needlenoggin's case, it seems like all the professionals he runs into are out to get him (Medi-Cal and the Rehab center, specifically). However, it occurred to me over the last few days, that if you're looking for a rule of thumb on the "who to trust" question, I may have one:

Trust the people that saved your life

In this case I mean Dr. K- from the previous post (as well as her superior, Dr. F-) and the Oakland Firefighters.

Dr. K met us, during clinic hours, to sign paperwork in order to get Needlenoggin some in-home-care, and managed to get Needlenoggin signed up for a real physical therapy appointment in a month! This AFTER saving him in that whole "spinal surgery" thing.

Then, the Oakland Firefighters' Random Acts Organization. Oh guys, you have NO IDEA how much you mean to us. As if these men hadn't become our heroes when they came to Needlenoggin's fall, or when they brought my children toys, or when they named Needlenoggin a citizen hero, or when they managed to get him some medical equipment. As if these men, and their fearless leader Ms. C-, hadn't made Needlenoggin's whole year by inviting him to be involved in their dinner-dance-fundraiser as a guest-of-honor. No, thye go above and beyond even that. Turns out that while we've been searching, in vain, for someone, anyone, to help with Needlenoggin's recovery, his story has spread, and they have a connection to chiropractic care. This means that Needlenoggin will be able to get some evaluation and some exercise and therapy ideas from highly trained professionals (instead of, you know, me), from people who know his situation.

AND, to top it all off, Needlenoggin was able to meet, and receive treatment from, the founder of one of the top Orthopedic Massage and Manual Therapy methods in the nation. He was a practice patient at a clinic here in the bay:

While Little Monkey made friends with the therapists in attendance:

Thank you everyone who is working on making Needlenoggin better!

"That's impossible"

2009-03-12T08:05:00.000-07:00

We hear that a lot in this house. Rorysaurus' colic was impossible, her flesh-eating bacteria too. Little Monkey's whole skull-adventure was sort of beyond belief as well, and then this whole situation with Needlenoggin.

Thing is, without trying to sound peppy or optimistic, I've begun to believe that nothing is particularly impossible, and that includes anything said by medical professionals. This includes the two rehab centers who have told me they won't provide false hope by giving me exercises to do since it is "impossible" for him to continue to recover at this point after the injury. (I've taken to just telling them he's only 3 months, instead of 9, past injury so that they'll give me more information).

However, yesterday, for the first time, someone used the word "impossible" in a way I could have only dreamed. Needlenoggin went in to the hospital for a Neurosurgery check up with one of his favorite people on earth (and one of his two favorite white-coats, ever), Dr. K-. The appointment was at 8 am, which means arriving at 7 something. He was up, out of bed and doing his hair at six something, all by himself. When he arrived at the hospital, he was carrying along chocolate, flowers and a card for Dr. K- as well as Dr. R-, (the two women he credits with saving his life after the accident and allowing him to recover as well as he has) with the intent of asking them to come with him to his firefighters' charity dinner thing. Dr. R- wasn't in, but Dr. K-, his neurosurgeon, was ecstatic to see him.

And THEN he showed her how well his legs can move. She started to cry a little bit. Then, after composing herself a little, she tested his strength, which was way beyond what she'd expected. Then she heard he was off of one of his terribly side-effect-ridden pain medications. She was in shock. Happy, happy shock.

She called me when they were done, and ordered a weaning off of another terrible medication (yay!), and then told me how impossible this was. She'd done his 8 hour spinal fusion surgery. She'd seen him less than 24 hours after the fall. She knew what his prognosis was...they weren't sure he was ever going to regain the use of his hands or fingers, and knew he wouldn't be able to sit up on his own."I'm the one who told you he'd never walk again," she said, "And I've never seen anything like this. His legs SHOULD NOT be moving."

"This is AMAZING," she said, over and over again, and said that she's not sure, now, what his recovery ceiling is. He's passed what she expected by SO much, who knows?

And then it was said. "If he continues like this, he may walk." Oh, the tears that brought me.

She happily accepted his invite to the dinner, and then told him she'd make sure when he arrived today for his ER follow-up that Dr. R- would be available to see him, and would take him to the ICU so his nurses could say hi as well. She also wants his MediCal worker's name and number to try and get him some PT/OT. He came home bubbling over, did a bunch of exercise, and went to bed early so he'd be rested to see them all again tomorrow.

So, today, we arrived a little bit early, and got a hug from Dr. K-, who then escorted us into the ICU. Needlenoggin met with almost all of the staff who kept him alive in the ICU (although he doesn't remember any of them). Then he was able to gift Dr. R- with her flowers/card/chocolate. She's supposed to be in a conference out-of-state that week, but she's going to try to fly back for that night so she can come. The whole ICU was astounded.

And everyone decided a supported-stand photo would be better than a wheelchair photo, so:

Let's recount the "impossible" here, shall we?

* Needlenoggin goes to a 7:45 am doctor's appointment by himself (dropped off since we had another appointment at home)!
* He comes armed with flowers to ask not one, but TWO beautiful doctors to go to dinner with him! My shy brother!
* He can move his legs! At all!
* He can move them enough that it makes his neurosurgeon cry!
* She was overjoyed to come to dinner with him!
* The other doctor is going to fly in from out-of-state to go with him!
* Needlenoggine is swamped by doctors and nurses who took care of him and are happy to see him!
* We get in and out of the appointment in record time!
* He's lost 17 lbs.
* They were able to get his medications to him!
* Supported by a bunch of people, a counter and a walker, we have an upright picture!

Speaking of impossible, how's this for an image?

Apparently, we have magic buses here in the SF Bay.
(Should say "Wheelchair Securement Location")

Emergency Room 3/8/09

2009-03-09T12:08:00.000-07:00

::Sigh:: I’m writing this from the Emergency Room of Highland Hospital at 4:24 pm, after yet another fun-filed day of 9-1-1 call, the fire department and an ambulance. Tuffy and I had spent a relaxed morning with the kids and had headed off to our local open-air mall to buy an Easter dress for Rorysaurus.

On our way home, we decided BY CHANCE, to take the route to the freeway past our apartment building. As we approached our building, I saw a firetruck and an ambulance parked outside. I parked, and asked Tuffy to go over and check to see who they were there for. No one was there, so he called Needlenoggin’s phone.

“Hello?”
“Hey, we were driving by and saw a firetruck out here. Are you okay, dude?”
“That’s what they’re trying to figure out.”

Crap.

I ran up to find 3 EMTs and 2 firefighters huddled around Needlenoggin in the hallway. Apparently, his blood-pressure had been dropping and spiking the hour we’d been gone, and his resting heart rate was down at 45 beats a minute (WAAAAY low). He had been feeling light-headed all evening, and in the morning, was REALLY out of it. He couldn’t reach us, so he called 9-1-1.

The EMTS were training, and one lady told me they wouldn’t take his chair to the ER or let me ride with him in the ambulance, or let him take his pain pills before he left. WTF? So, I went to get one of his RXs, and then headed to the hospital, where I was kept out of his room for nearly an hour.

When I finally got in, he was on O2, had some blood tests running, and there wasn’t much else they wanted to do except a chest Xray (to rule out a, as Christopher Titus would say, heart episode). I was getting ready to leave to go home and get ready to bring him his chair when the orderly showed up to talk about the xray.

“So, we’ll wheel you in there on the gurney. Can you stand up and walk over to the X ray table, then?” he asked, obviously worried about Needlenoggin’s light-headedness.

“Nope. Can’t walk to the table. I’m…” He was cut off.

“You don’t have to walk far!”

::sigh::

“I’m a paraplegic. I can’t walk to the table. Sort of by definition.”

“Not even a few steps?”

And people wonder why those with medical conditions hate hospitals!

A few hours later he was discharged with an official diagnosis of “::shrug:: No idea”, and told to come back if the symptoms returned. No infection, no potassium deficiency and no heart problems. Some of the symptoms seem to match the worries about his elavil/paxil mixing, though, so on Wednesday we’ll ask for a test on that from the neurosurgeons we’re going to go see.

Medication, Mediation and Meditation

2009-03-04T11:45:00.000-08:00

It seems that Needlenoggin's psych meds aren't working as well as we hoped, because he's sort of spiraled into a very rough patch of depression. Perhaps the worst depression I've seen since he came home, including self-destructive thoughts and extreme apathy. We've upped the new med (which isn't at full effect after just a couple of weeks yet anyway, and are hoping for the best. He's a little better today. Keep us in your thoughts and prayers, huh?

On the upside, we did get in to see a WONDERFUL psychiatrist who has just upped Needlenoggin's depression medication. She does want me to take him in for a blood test, however, because apparently, two of the medications he's been on (in very high doses) since August, can have some pretty nasty interactions. Good to know, though, right?

I also got the job, so I'm working with another individual in a wheelchair (this one a professional young lady and power-chair soccer world champion). Again, it is only a few days a week, and I make less in a week than I have to pay for Needlenoggin's help in a day, but I will take all the help I can get my hands on.

Oh, and when we went out to SCVMC for a check-up, we met with some phenomenal doctors who wrote him all the prescriptions he needs, so we may actually be able to get him the medications that MediCal insists on denying. No progress yet, but we can hope it'll work. However, Needlenoggin met a family down there going through all the same rigamarole about "progress" and insurance due to a broken wrist. The guy is in about as bad a shape as Needlenoggin, and so my brother was able to give some advice, some "speaking from experience" and get some info on Project Walk as well.

The kindness of strangers and a job

2009-02-27T11:00:00.000-08:00

So, we have Needlenoggin's old power chair and shower chair up for sale. The idea is that with the money we'd be able to fix up the donated wheelchair (it just needs a few after-market parts to make it paraplegic-friendly). However, so far we've gone nowhere fast on selling them (by the way, if you need a power chair or shower chair, leave me a message here at Round Peg's Wheelchair Emporium, and I'll make you a great deal). Craigslist is notoriously unreliable, so it is a long process.

However, we got two wonderful emails this weeks, from total strangers who have been reading our craigslist ads.

The first was a woman in San Jose who told us she'd love to give us her daughter's hand-me-downs for Rorysaurus (clothes are always appreciated...she grows so fast), and she is helping us with Home on the Range (our food service place) by sending money for a meal or two. I was so touched I cried.

Then yesterday I got an email from a lawyer in SF who'd broken her ankle. SHe'd been browsing wheelchairs online and found our ad. She said that she'd been the recipient of so much goodwill after her accident, she wanted to pay it forward, and sent us the money to pay for Needlenoggin's chair repairs. Random and out of the blue.

Thank you. Thank you, thank you, thank you.

Oh, and then, in the elevator, I found an ad up for a caregiver for a lady in a wheelchair. She just needs help with her morning routine and getting into her chair, and she's in the same apartment building as we are, so if she's willing to hire me, I can work for an hour and a half while Little Monkey naps at home with Needlenoggin. I hate to add more to our schedule (and more responsibilities), but we're BROKE, so you do what you have to, right?

Wheelchairs

2009-02-20T12:48:00.001-08:00

I wanted to say thank you to those who donated the Wheelchair to Needlenoggin. I'd had to buy one on Ebay, and it wasn't really working out for him, so the joy we all experienced when he got into a comfortable wheelchair that he could maneuver around the house for the first time was wonderful. We've got a little bit of wheel-work to do on it, but he's mobile! Thank you.

Here are pictures of the chair I got as well as the one so kindly donated. We couldn't be more grateful:

Needlenoggin, Rorysaurus, and St. PJ the Firefighter (with Rorysaurus's fire-guys valentine):

Here he is about to take Dingo out:

Thank you so much to everyone who helped to get him new wheels. You guys are wonderful!

My love-hate relationship with California

2009-02-20T12:02:00.000-08:00

I hate the way the state of California handles its money. Really I do. They're broke, and because of that a lot of people are suffering. We did get paperwork filled out for Needlenoggin's California disability checks, only to find out that MediCal has only approved him for 8 physical therapy visits. EIGHT. Oh, and instead of 8 hour-long visits, he gets 45 minutes because they've cut the hours for his PT.

Now, it was going to be hard to get anything useful out of this Physical Therapy place anyway, because they have an exercise bike he can't use, 2 treadmills, a harness that can't lift him upright and some yoga balls. However, I'd hoped that with him going every week or two, he's get confident in his abilities, whatever they are, and learn some new stretches and strengthening exercises. However, instead of that once a week or once every two weeks (what we'd been assured would be his schedule, at a minimum, they're allowing him 45 minutes every 7 weeks. In a building older than my grandparents with an elevator that makes me anxious, nevermind how it makes Needlenoggin feel.

Unbelievable.

And then, every once and a while, we hit the jackpot. While waiting (and waiting, and waiting) for a psychiatric referral for anti-anxiety drugs, we found Alameda County's Emergency clinic for psychiatric meds. Sausal Creek is a miracle (well, at least the doctor we've seen twice is. The waiting time is terrible and at least one of the nurses has some severe power-issues, but still). The man met Needlenoggin, talked with him and changed his anti-depressant, and when we came back to have the Rx refilled (they can only write 2 week scripts), noticed a marked difference in Needlenoggin. Let me make clear that the doctor we saw is FANTASTIC, cares about his patients (Needlenoggin doesn't get much of that, generally) and has a wonderful demeanor. Thank you!

We have noticed it too, especially as he's come off the Paxil he was on (MediCal likes Paxil since it is cheap and available as a generic). It was better, but there were still major sleep and panic issues, so we kept searching around for another doctor, a different treatment or a better medication.

We finally found a doctor who was willing to look over all of Needlenoggin's records, medications, their interactions, and prescribe him something to help with the pain and the anxiety. All of the treatment options he offered were sort of experimental, but that's partly because Needlenoggin has burned through the majority of the conventional nerve pain meds. We were wary, but at this point he'd be willing to try accu-puncture or chanting if it would help dull the pain and let him get to sleep before 4 am. And you know what? The doc up here at the Heathcare Options clinic was compassionate, kind and understanding. We've been on both the new medications this week, and let me tell you something:

Right now, I live with my little brother, who happens to be sitting down a little more frequently than he did before the accident. It isn't perfect, because living with him never was, and he's still in pain and still a little emotionally unstable...but he has hope that things will get better, and he's willing to work on recovering despite the idiotic way the system is set up. he even took the bus to go pick up Rorysaurus from school, across our town and into another city 5 miles away, all by himself. I've never been happier for him, and I know that he's enjoying getting to bed at midnight and being able to function by ten in the morning.

Here's Needlenoggin and Rorysaurus on Valentine's Day (she's got her Totoro from us and her Batman Valentine from him)

Ack!

2009-01-18T20:44:00.000-08:00

So, the "great" state of California is in the middle of a budget crisis. Arnold is refusing to budge, and so things aren't getting paid out...things like Needlenoggin's State Disability checks. Oh, and wheelchairs aren't getting approved through MediCal right now either. So, even though the hospital wants his loaner-chair back, he won't have one from MediCal until June.

So, wheelchairs run about $2-3K out of pocket, and Needlenoggin isn't even getting his $400 a month from the state. Couple that with his out-of-pocket physical therapy ($120 a pop), his rent and bills ($1500 a month) and his part-time medical caregivers (so that I can feed my kids and put them to bed) (between the two it is about $1300 a month), his computer biting the big one (and getting a surprise $120 fee for the computer) and Rorysaurus starting preschool ($700 a month) on Monday, and you can see why I've begun to panic. Needlenoggin's care alone costs more than Tuffy makes in a month (not to mention our rent, food, bills, insurance, etc). I'm afraid we're going to end up going bankrupt before the state steps up like it is supposed to in cases of the severely disabled or Needlenoggin gets a dime from the people who are responsible for his injuries.

My folks are paying for most of the caregivers right now, but the rest of this is on us, and we don't have that kind of money. When we got my scholarship, Needlenoggin and I splurged on a birthday gift for DH (a new camera, since ours died) at $100...$50 from each of us. That was our big expenditure with tax refunds and a scholarship check...and we paid down some of our (now huge) credit card debt. Thing is, Needlnoggin is SUPPOSED to have Supplemental Security Income and he's supposed to have In Home Support Services and In Home Operations money (the people who are supposed to pay for his care in home (namely paying me so I can keep him housed and fed and keep Rory in school), but the soonest we'll be getting any of that covered is now May. May!

So the state has left its most dependent, at-risk populations, with no resources, to fend for themselves while the legislature works to ensure that the wealthiest Californians keep paying low taxes. The fact that they can do this while simultaneously screwing the public school system, road repairs and health care is awesome. Way to go, CA!

Thank you

2009-01-08T09:57:00.000-08:00

to all of you!

To all of you who donated time, effort and prayer to us:

To all of you who donated to Needlenoggin and Little Monkey's accident funds:

To my mother's friends who have helped out with food delivery while cooking has been so hard for Needlenoggin and our free-time so short:

To the dog-walker who takes Needlenoggin's service dog out for free, to the wonderful and compassionate dog trainer who works with the dog every week:

To Alliance Labs, who make one of Needlenoggin's most necessary medications, and are willing to fight MediCal for us, give him patient assistance and mail him the drugs overnight:

To *K*, the neurologist who keeps such good tabs on Needlenoggin, and the Physical therapists at UCSF who push him:

To our local para-transit group who is helping him get some independence:

To our pediatrician who treats us with such love and consideration:

To the therapists who care for Needlenoggin and Rorysaurus:

To our friend who watches Rorysaurus a few days a week:

To my friends (especially my internet buddies) who are willing to listen to me try to hang on to my sanity:

To my folks, who are helping the best way they know how:

To Tuffy, who keeps me as close to sane as I get:

Thank you.

Minor Christmas Miracle(s)

2008-12-29T13:55:00.001-08:00

So, on Thanksgiving weekend, we did our first trip down to Southern California to see the family since the accident. Needlenoggin did really well, all things considered, and we arrived in SoCal so he could have dinner in the hotel with my folks:

There was ONE hotel in my folks' city with ONE roll-in shower, and my parents rented it for Needlenoggin, which meant that for the first time since July, he got to take a shower by himself (they hosed the patients off at SCVMC and he's been sponge bathing, but still). He told us he hadn't realized how dirty he'd been until he was finally clean. Oh, and the bench they'd installed (so you don't have to shower in your wheelchair) wasn't ACTUALLY attached to the wall, so he did have to shower in his wheelchair.

So, first shower.

Then we had a first birthday for Little Monkey/Glad you're alive party for Needlenoggin, and had awesome cake. Ninja themed? Yes it is.

Lots of friends who we haven't seen in ages (and who live far, far away) came to celebrate with us. More pictures are here and here.The best visitor for Needlenoggin though was his favorite high-school teacher. The guy came from a family celebration and sat and talked with Needlenoggin. Now, my brother has always been rather taciturn, and doesn't talk at great length, but since the accident we've had entire days that consist of two or three three-word sentences. So, to see him and Mr. P yukking it up was heart-warming, especially when he took an hour talking to us about the guy afterwards. If you're reading this, thank you so much for investing in my brother. You are a shining example of what teachers are supposed to be.

So. Fantastic teacher visit.

Anywho, the party went well. We also got some great progress in getting Needlenoggin into a car sans wheelchair. No, he can't do it by himself and yes, it involves multiple people and a lift, but hey, check him out:

So, riding in a real car. Cool.

Then we got home and had Little Monkey's check up at his surgeons' office. They poked him, squeezed him, measured him, and pronounced him healthy. "He may still need a corrective surgery or two to fix the outside of his skull, where it is all bumpy and dented, but that won't require any more cracking it open," we were told. "So, good. See you in six months."

Awesome. Minor neurosurgery, maybe, in a long time. Cool.

Oh, and we're figuring out our lift. We managed to get Needlenoggin into one of our recliners to watch a movie, which he said is way more comfortable than his wheelchairs. It's a half an hour process getting him in and out, but he REALLY seemed to enjoy it, so rock on.

Then, mid December, we took family Christmas pictures:

And made Christmas cards:

Later that week we went to the doctor's office for Needlenoggin to find that his doc had actually received the records and was a much, much nicer guy. Talked to me about Little Monkey, admitted that spinal cord injuries aren't his thing, but was willing to talk to us and get it all sorted out. Wrote correct Rxs.

Totally cool.

Then my folks arrived for Christmas. Minor miracle in and of itself, really.

They hung out with Needlenoggin on Christmas Eve and came back to our place for Christmas dinner. On Christmas morning, Needlenoggin was situated (in his awesome new Batman jammies) in the reciner nearest the tree. I went to go let the kids in (they were playing in our room), and came out to find that he'd (intentionally) slid down the the floor so he could open stockings with Rorysaurus. "I want to celebrate Christmas morning like a person," he said. "Take that thing," pointing to the wheelchair, "away."

It is a huge workout on his center, since he doesn't have complete control over that area, but how cool is that? (Getting him back up is less fun, but whatever). He's even found he can snuggle Dingo better from on the ground.

So, sitting. Score.

He's also trying to use his manual wheelchair more and more as his once-broken wrist gets stronger. We're still waiting on his permanent wheelchair to come (he's in an ill-fitting loaner), which we hope will get him out and about more. Still no social services (they said maybe in April), but we've been blessed to have a wonderful dog trainer volunteer her time to work with Dingo and a volunteer dog-walker come several times a week as well.

Yay is. C'mon 2009!

Neck-brace and PT for Needlenoggin

2008-12-03T08:30:00.001-08:00

Well, after two scans (a Cat Scan on 11/24 and an Xray on 11/26), Needlenoggin was finally cleared to live his life without a neck-brace! Yeehaw! This is great news because now he can look around from side to side and up and down, something he hasn't really been able to do since the fall. (We took it off for photos since he hated the look of it so much, but he had to wear it all the time to make sure he didn't snap his top two vertebra). Ick.

If you remember, the brace looked like this:

Now, he looks like this:

Also on the 26th, we went to his physical therapist (all the way out in SF) and she tried to get him into a standing frame. it didn't quite work (since the harness they had is awful and Needlenoggin isn't quite flexible enough in his legs to stand). She bucked him in here:

and was able to get him up this high:

He can't weight-bear (hence the uncomfy look on his face) but being upright is so good for his spine and internal organs. e was sore for a good long while afterwards, though.

Oh, and we managed to get him into some hot water...literally. His therapists have all recommended that he get into a warm therapy pool to ease his spasms and take some weight off of his fragile skin. We were finally able to find such a pool and a lift to get him in and out, and while not floating away was a lot of work, he loved it. It was the first time he'd been submerged in water since the accident (no baths or pool therapy until this point).

Broken Hearts

2008-12-03T07:58:00.000-08:00

Alright, the title may be a little melodramatic, but I was very shocked at Rorysaurus and Little Monkey's checkup the other week.

In case you didn't know, or remember, Little Monkey has a heart defect (he did have two, but one went away all on its own). Instead of looking like this:

Little Monkey's Aortic Valve looks like this:

It's a minor defect as far as heart defects go, and while it probably will require surgery, it shouldn't be an issue until he's in his forties.

Well, when we went to the kids' appointment, my WONDERFUL pediatrician checked Rorysaurus' ears and heart, then checked Little Monkey's head, then listened to Rorysaurus' heart, then checked her reflexes, then had Rorysaurus lay down so she could hear her heart... You see where this is going, right? So, I asked what was up, and (after getting the opinion of the other doc in the office) she told me Rorysaurus has a benign systolic heart murmur, known as a Still's Murmur. Not a real problem, just something we need to be aware of for dental surgery because of an elevated risk of infective endocarditis (where bacteria enters the bloodstream through dental procedure and infects and kills a heart valve. It actually happened to Dh's cousin's wife (hereby dubbed Music Mama).

By the way, if you have any extra prayers to spare, please keep Music Mama in your prayers. She had a valve replaced a few years ago due to the endocarditis, but it is failing now, and she's in her sixth month of pregnancy. Her docs figure it will be between 3 days post-partum and a few years before the valve needs replacing, but if y'all want to pray the need is delayed as long as possible, that would be great.

More Doctors for Needlenoggin

2008-11-11T08:42:00.000-08:00

Always more doctors. :)

On 10/27 I took Needlenoggin to an appointment all the way back down at SCVMC, hoping to get the brace off of him or get him some physical therapy or something. I dropped him off at the appointment, and went the couple of blocks back to the rehab center to order his medical records.

When I got back to his doctor, I found out what probably saddens me the most about his injury. Needlenoggin's memory is gone. Sometimes it is nearly normal, but most of the time he can't remember instructions, directions, a few things on a list, the day of the week, who his doctors are or when he came home from the hospital. He'd half-remembered info to the doctor, and between the staff guessing and the power of suggestion, they'd gotten almost no factual information. I had to go in, correct them, and get referrals so he could get doctors that weren't affiliated with Dr. F.

I DID get to see his discharge paperwork, by the way, and I think I've found out why they didn't want me to have the records. The discharge form says he can do stairs with a lot of assistance, and that he is mentally perfect and has a wonderful memory. Either lies or utter incompetence.

Some cool things, though:

This is his broken wrist.

Here you can see the injury to his vertebrae.

Here you can see the pieces that broke off.

Here's the metal rods in him from his fusion.

I did get him to a PT appointment over at UCSF, and the lady was wonderful. We're now playing phone-tag with the real PT clinic to try and get him an appointment, and trying to get him into a UCSF General Practitioner. Looks like we need a UCSF referral for that (if any of you work there, we could use it!), so it is a process.

Dingo-Berry

2008-11-10T05:25:00.001-08:00

Meet the newest member of my family.

After seeing Needlenoggin break down whenever he was around dogs or saw one in a commercial, or thought about the dog he'd had back at my folks' house, we all decided it was time to start looking for a dog. We checked at the pound, but found nothing there but older dogs, aggressive dogs, pit-bulls and a Siberian Husky puppy. So, we searched craigslist, and applied at some rescues.

A thing I don't get about dog rescues. These animals were going to be put to death, are in cages and cost a LOT to care for. A family wants to bring them home, and I understand wanting to ensure that the dog will have a good life, but some of the requirements are unbelievable. We were turned down by 5 rescues.
1) They don't give dogs to families with kids.
2) We don't have a dedicated private yard and do have kids.
3) No other dogs and we don't make enough (?!?)
4) Too many people in the home, no private yard
5) No kids, dogs don't like wheelchairs, no yard.

Well, yes, an adults-only home with a large, fenced yard, lots of disposable income and someone at home all day (we met that one!) with other well-behaved dogs would be ideal. However, isn't a stable, loving home better than a shelter?

Then we found Tony La Russa's Animal Rescue Foundation, or ARF. Arf had LOTS of dogs, some rated for living with kids, some not, some that needed yards, some that didn't, and the sizes ranged from 4 lbs to 60 lbs. Awesome. (yes, I'm totally shilling for them. They are a GREAT organization, the dogs come microchipped, fixed and you get a free 7 week obedience training class when you adopt. If you're in the Bay and want a pet (they do cats, too), look them up.)

Anyway, we looked at a few Lab mixes, some of whom really seemed to do well with the kids, but a lot of them were afraid of the wheelchair. Anytime Needlenoggin would move, the dogs would panic and run from him. It was heartbreaking. Then we discovered "Beatrice" the Shepherd mix. She didn't mind the wheelchair at all, is (pretty much) housebroken and was an angel with the kids.

Here's the photos they took at ARF:

Doesn't Needlenoggin look happy? :) So, Beatrice came home, and after an hour or two, had adopted both Needlenoggin and Little Monkey. Needlenoggin is her friend, and Little Monkey is her puppy. She will lick tears (or food) off of his face, cuddles up with him on the floor and will let him pull on her skin and fur to balance and cruise around the house. Being the kind of people we are, we decided any dog that looks like that and loves to lick small children so much should be named "Dingo." And since she's just the silliest dog ever, her full name is "Dingo-Berry." I know, I know, there's something wrong with us. I don't care, Needlenoggin loves her.

And, she loves the rest of us, too:

She's registered with the United States Service Dog Registry as a service dog in training, and is learning to pick up objects Needlenoggin has dropped, hold doors open for him and pull his manual wheelchair when he gets tired. She even went out in Public to the Monterey Bay Aquarium the other weekend in her service-dog-in-training vest.

All in all, she's melding in quite well. She's a little protective of Needlenoggin and Little Monkey (she'll sometimes growl at strangers who approach) and she's made a few messes (easily cleaned up, but still) on the carpet in the apartment, but otherwise, she's doing well. "Sit" and "Lay Down" and "Paws U[" (putting her paws in Needlenoggin's lap and standing up so he can pet her) she has down, and she's working on "Up" (onto his bed), "Off" and my favorite, "Baby" (where she goes to lick Little Monkey). She's already a part of the family (after 3 weeks) and even joined in the Halloween fun:

Anyway, thought I'd introduce y'all.

The infection of a triplegic

2008-10-17T18:48:00.000-07:00

Sorry it has taken so long to get things updated. Life around here has been nuts since Needlenoggin came home, with doctors' appointments nearly every day, my school about ready to start back up and moving everybody in to the new home. This update covers him through about 10/25.

So, let's start with the title, huh?

Needlenoggin came home on 10/4, and had his first check up at the GP (back at Highland Hospital, as they're the only place around here that takes MediCal). We get in, are made to wait for an hour and a half, and then are ushered in to see Dr. "F-is-for-fail." (Can ou tell how well this is going to go?) Anyway, Dr. F sits down with Needlenoggin and I and I hand over all the prescriptions Needlenoggin is taking that need to be refilled, and say how glad I am that he got an appointment so quickly. Dr. F looks at me, rolls his eyes at the Rx papers, and then opens his BLANK manilla envelope, looks over at Needlenoggin and asks, "So, why are you here?"

Ummmm... Needlenoggin is too shocked to respond, so I start to fill te guy in. :I didn't ask you," he grumps. Yeah, I know. But Needlenoggin's memory is shot and he doesn't know the dates he was here, so maybe you should listen to me. Turns out, the guy hadn't picked up any of Needlenoggin's records from down the hall at Medical records, his fax machine was broken, so he'd never received the ones from Valley, and he had NO IDEA who my brother was or what was wrong with him.

He agrees to refill the Rx forms for one month, then makes an appointment for us to come back in December, and tells us he'll need the records before he can refill the scripts further. To re-cap, "Here's 30 days of meds. Come back in 60 days to talk about getting more." Oh, and then he changes Needlenoggin from Percoset over to Vicodin (for breakthrough pain) without asking why or even telling us he was doing it (just wrote a different script) and writes for all EXCEPT Needlenoggin's anti-anxiety medication. When we ask for that one as well, he tells Needlenoggin, "If you're going to be my patient, I'm going to take you off of that," agrees to write a VERY temporary script, and says, "He looks fine to me, so I don't think he needs it."

Really, you got all of that from not wanting to talk to me, a few words from Needlenoggin and your what, gut feeling? Idiot.

Wen we get his little form back, we realize he's written Needlenoggin's diagnosis on it. "Hemiplegic."

Well...he is only half paralyzed, so I guess that could be an honest mistake. See, Needlenoggin is a PARAplegic, which means his paralysis affects the lower half of his body. In HEMIplegia, the paralysis is on the right or left side, and is usually due to a stroke, not an accident.

Two days later, we realize that Needlenoggin has a UTI, a very serious condition in paraplegics, so we make another appointment with Dr. F in order to get an antibiotic. Well, first I tried to get the doc from Valley who wasn't a moron to prescribe one over the phone, but she wanted there to be a urinalysis first, so he'd get the right drug, and sent us back to Dr. F. Fine. We get in there on 10/16, and and he still didn't have Needlenoggin's records, and addressed him as a quadriplegic, while Needlenoggin was holding a clipboard in his left hand and writing with his right. That would signal, at least to me, that maybe all 4 of his limbs aren't paralyzed. So, Needlenoggin and I coined the phrase "Tri-plegic" for the imaginary diagnosis Dr. F gave him.

At this appointment, Dr. F had written a script for some random antibiotic and sent Needlenoggin out the door before I've even parked. He DID order a urinalysis, but wrote the Rx first.

::sigh::

Which brings me to that whole drama.

Without pre-authorization, MediCal will only fill 6 medications. Needlenoggin takes 8 all the time, so we had to pay for 2 drugs ($160 and up per drug per month) while they think about covering them. Then he gets this antibiotic, and it's #9, so we have to pay for that one, too. The state of California REALLY is trying to kill poor people.

Alright, lastly, when we called Highland to check on the time for his Neurosurgery appointment on 10/15, we were told he didn't have one. Then, we got yelled at by the MediCal processing board ("We won't cover him if he skips appointments") and Highland for missing it. Grrr. We were told that "around 10/22" we'd be called for an appointment in San Jose to get this brace off, but they forgot to put him on the schedule, so it looks like it can come off in January, when they can see him.

Oh, and there's still no help from IHSS, no word on his California State Disability Insurance, and no SSI. I've hired a nurse to come in part-time to help me out, but I'm having to pay the guy out of pocket, so he's only in for a couple of hours in the evening for the most medical-labor-intensive parts of the day, but I'm going a little bit nuts. I must get two dozen phone calls a day, and no one is calling with good or helpful news.

Oh so here's a nifty picture of the back of his neck:

That's from the spinal fusion and the exploratory drain surgeries in July and August. C'mon, it's a cool scar.

Little Monkey's Helmet!

2008-10-17T17:50:00.000-07:00

So, the first one that was ordered was too large (looked like the poor kid had a colander on his head) but the second one is here, and it is wonderful. Here he is, grinning away (as usual):

A good thing, too, as he's started to crawl AND to cruise from person to person as if he's in any way allowed to be mobile. Seriously, the thought of him clanging that HUGE soft spot into anything sharp or hard, or of Rorysaurus catching him with a sharp elbow or toy...anyway, the helmet is wonderful.

He's also got FIVE teeth and is cutting a sixth, so he's been grumpy and tired and nursing ALL THE TIME, but he's still loving and cuddly, just very, very needy.

Update Part 2 (He's home!)

2008-10-06T10:19:00.001-07:00

So, Thursday night the hospital bed had arrived, and we were expecting the Hoyer lift sometime on Friday. The bed is a piece of crap, as old as I am, and instead of two rails on each side (one at the top and one for the feet) there are only top rails. Oh, and they're old and badly attached, so I'm not sure they'll withstand all the tugging/pulling that Needlenoggin has to do to roll around in bed. We've fitted it with the anti-bedsore mattress cover Gloria provided for us, and got it all made up, waiting for him.

Friday morning my mother and I headed down to SCVMC early in the morning. The Hoyer arrived, and got set up, along with his monkey-butler (he'd asked for a telescoping chair and a monkey butler to serve him drinks. So far, no good on the chair, but here's Jojo):

We started on the training, which includes range-of-motion exercises, getting a wheelchair up and down a curb and medications (including shots, yay!), food schedules, etc. They were adamant about not giving him a power chair, so I decided to go buy the used one I'd seen an ad for. I thought we had this pretty under control, so Tuffy and I headed out to Monterey.

then, the medication crisis arose. Seriously, people, what a system. Seems that the medications, all 12 of them, were submitted to Walgreens under his Medi-Cal insurance. However, at one point Needlenoggin had filled a prescription at a Walgreens when he was still living with my parents, under their insurance, so Medi-Cal decided he had Blue Shield insurance, and that they didn't have to pay for anything. Umm...what? And, we learned that without a TAR request, Medi-Cal will only fill 6 prescriptions. Six. So the other six were going to have to be out-of pocket with one of them a $3500 a month medication, or he'd have to do without.

Which ones should he give up, though? the anti-spasm medication, his pain meds, the ones that treat his anxiety and depression? The ones treating his blood clots? Just one more HUGE problem with the under-funded healthcare system in the US, and how it is harming or killing poor people by making them choose which of their lifesaving medications they will get every month. Makes me so angry.

Anyway, so, after much discussion, we wheedled the meds down to 9 (some were redundant and some we could get over the counter (expensive, but still). We learn that Walgreens has to get a fax from Blue Shield explaining that no, he doesn't have coverage through them and hasn't for years, and then Medi-Cal will cover the 6 medications they want to. We have to apply for the others, and it will take 7-10 days. Needlenoggin will have to remain hospitalized for another week or more, and he finds this out on what is supposed to be his last night? That simply isn't going to work, and my father and I both said so. Eventually, he ended up paying for a week of the medications out-of-pocket (not cheap, either) so that Needlenoggin could go home while this whole mess got sorted out. We all struggled back to the lodgings for the night, and crashed.

Saturday morning dawned bright and EARLY and we all piled into the van, with BAGS of stuff, two wheelchairs (manual and electric) and a week's worth of expensive medications. We'd waited around an extra hour past what we'd planned waiting for someone to read his ultrasound and tell us if the clots in his legs were gone, but no one came. We told them to callus on Monday, loaded Rorysaurus into Needlenoggin's lap, and moved out.

We stopped for lunch at Fuddruckers (a place my family used to go a long time ago, when I was very little), had chili and burgers and fries, and had an enjoyable time.

Then, we drove the last few blocks home, and Needlenoggin rolled into his new home for the first time.

It was bittersweet, and I know this is going to be a rough transition for everyone, as we're working on getting the tables at the right height and navigating the corners of bedrooms and bathrooms. We're all very glad to have him home, though.

Update Part 1 (through 10/2)

2008-10-04T23:11:00.000-07:00

So, Needlenoggin's PT dropped him. She had him on a sliding board and the wheelchair wheel turned and he slid to the floor. She assisted him down to sit on his ankles, but he was in severe, severe pain for a few days, with more nerve pain also.

However, that did eventually pass, and we were told that the breaks that had been seen in both ankles on the Xray were, in fact, from his previous accident. So, they didn't actually break both ankles. like it was originally thought, but he's not really up to the task of transferring without his Hoyer lift yet, apparently. So, they decided to send us a hospital bed, a loaner manual wheelchair (his custom one won't be here until 2009) and the lift. Before the fall, they weren't sure about the Hoyer, and didn't want to send the hospital bed, either.

However, for long periods of time, moving around in a manual chair on carpet with a barely healed arm is too hard to do full-time yet, so I found and purchased a used power wheelchair for him. It has no bells or whistles, but it goes. I've been TRYING mightily to get a quote on a newer chair, one that actually fits him, & is smaller (so navigating around is easier), but so far I've sort of been ignored by the wheelchair companies. Oh well, this one will work for right now.

Anyway, so we canceled our 9/27 Saturday visit because we were all dealing with green phlem, and so I headed down at 7 am on Monday, 9/29 to meet up with my folks and do training, get his list of doctors and specialists and get his medications so he could go home.

What we discovered was that life had become unbearable at SCVMC. They had put him, full time, in a loaner manual chair. It was made for someone my size, doesn't tilt or let him weight shift like he needs to ("just do it with your arms...lift your whole weight up with your recently broken arm. Why is that hard?"). It also sits him differently, and requires much, much more effort to move, even on the tile floor of the hospital. How is that going to work with carpet at home?

Anyway, hey were supposed to do a full training of me on his care, and while the OT and PT did give me a whole lot ("here's how the hoer works, here's how to do range-of-motion exercises, etc) but the nurses sort of ignored me most of Monday on his medications and other medical care. The next day we scheduled a meeting with the care-people and found out that nothing had really been arranged. He had no medical supplies ordered, his bed and hoyer "should" be there by the time he got home, and they weren't thrilled with the idea of a temporary power chair. Um, tough? Deal? Didn't know how to explain that. Anyway, before I went home on Tuesday, we'd gotten everyone in agreement, and I got to observe some of the medical procedures. My folks did the evening routine, and I was chastized for not being there. this is exceptionally finny because they'd ignored me Monday night and had known what days I'd be available FOR A MONTH, so I think they're just upset that they didn't have their act together, yet again. Oh, and his caseworker, who'd always said his release date was October 1st, got angry and condescending about how she had told us that his date had been changed to October 8th, and why weren't any of us listening? I explained that a)I'd said from the beginning that I could only get him on a weekend and that b)she'd never mentioned this date change to anyone in our family. then she turned to Needlenoggin and said "Oh yes I did! I came in to your room and told you." When he disagreed, she basically called him a liar. This woman has done nothing but undermine his care from the start (she was the one who thought he'd be able to go home with no problems even with a spinal fluid leak).

So, the week wore on. Thursday night my folks and I decided that I should get more than one night of practice at the night-time routine, so Little Monkey and I piled into my father's car, and headed to SCVMC. I did the routine while Dodo (what Rory wants to call my father...he wants to be "Vader") watched my son. As we left, I got a really good photo of Needlenoggin and Little Monkey:

Cute, no? More update when I get a chance to write again.

T-1 ASIA C (and other things)

2008-09-24T09:16:00.000-07:00

So, Needlenoggin has been upgraded to a T-1 ASIA C (he was ASIA B before hand). I've spoken with his neurologists and neurosurgeons, and finally found SCI Info Pages as a great website to explain all of this nonsense. What follows is a short explanation of what this means, in layman's terms.

There are 4 parts to your spinal cord. The part that attaches to your neck are the Cervical vertebra, the ones from your shoulders to your hips are the Thorasic. Then there are five Lumbar and the fused Sacrum at the end of the cord (your tailbone). These are abbreviated C, T, L, and S.

According to Dr Wise Young at Rutgers, "In general, neurologists define the level of injury as the first spinal segmental level that shows abnormal neurological loss. Thus, for example, if a person has loss of biceps, the motor level of the injury is often said to be C4. In contrast, physiatrists or rehabilitation doctors tend to define level of injury as the lowest spinal segmental level that is normal. Thus, if a patient has normal C3 sensations and absent C4 sensation, a physiatrist would say the sensory level is C3."

Needlenoggin is a T-1 classification with impairment at C-8 (some tingling and numbness, but control of the muscles in his hand). The ASIA is just the name of the organization that created the scale of injury, the American Spinal Injury Association. Then we get to the numbering, which is very confusing. Here's the RoundPeg version:

A= Complete: No feeling or motor control below the injury level.

B= Incomplete: Feeling but not motor control below the injury level. (According to Dr. Young, a rather rare classification). this is where Needlenoggin was before.

C= Incomplete: Some motor function is preserved below the injury level, but less than half of the muscles below the injury are at grade 3 (able to go through a full range of motion against gravity, but not resistance). This is Needlenoggin's current classification).

D= Incomplete: More than half of the muscles below the injury are graded 3 or above.

E= What Spinal Cord Injury?

Ta-da! What would you all do without me? Anyway, so that's the good news. the bad news is that no one knows when he's coming home (still!) because his Physical Therapist wants to keep him longer now that he'd get something out of it (can actually do rehab now that his cast is off) but the center still wants him gone. Of course, Needlenoggin wants to be home, himself, but knows that the in-house rehab is best for him. We'll see.

Now, the pictures you're all waiting for:

The Oakland Fire guys sent Rorysaurus a firefighter outfit, and some toys. She now thinks that all firefighters do is bring toys and "look at you when you hurt your head." So, of course, she brought the biggest toy of them all to Needlenoggin, and checked on his head.

I don't have a photo yet of her and "PJ", but she named one of the monkeys sent to her after the firefighter who cared for her after the accident. Very cute.

Oh, and the above photo is of a piece of her artwork. I didn't touch a single pen on this (although I did prompt things like "does he need another arm?" and when she asked where his chair went, said "draw circles here"). This is, to quote her, Rorysaurus and Needlenoggin going to the park. They are holding hands." Too sweet.

This morning she woke up with a 99.5 fever, so she stayed home today and vegged on Blue's Clues.

Needlenoggin update (with video)

2008-09-20T21:24:00.000-07:00

Well, his medical drama continues. I saw Needlenoggin on September 7th before Little Monkey's surgery, but after his horrible experience with the terrible night-nurse, I got my mother to call every shift to talk to each and every nurse assigned to him at SCVMC. We made sure he got his medications on time, and everyone told us he was doing splendiferously.

Turns out, that wasn't the case. The catheter that was misplaced continued to be uncomfortable, and began to bleed. This triggered some worry, but not really enough to do anything. Then, on Monday, the 15th, he was delirious and difficult to understand on the phone. Tuesday, he called incredibly confused and in tears. They'd not gotten him all him medication again, and he had a fever of 103. They had put him in his chair at some point, and he was so dizzy and uncomfortable that he went rolling down the aisle looking for a doctor. A nurse, who we'll call "Mess", told him he did not need to see a doctor and was fine. When, during their conversation, he nodded off because he had a fevergot in his face and screamed at him, and then forced him back into his room. Then, he was put back in bed and not medicated or turned, and was ignored as he called for the blankets to be taken off of him, or for ice packs. That's when he'd managed to call my mother.

Needless to say, I was so mad I could spit. He told us that eventually, a sweet nurse who wasn't even assigned to him, Jackie, came into his room and put ice packs on his legs and a cool rag on his forehead, and held his hand while his fever came down a little. We called her to let her know she was an angel and, at his request, brought her a tin of cookies. She was compassionate and kind and good, and provided the kind of care that everyone hopes their loved ones are receiving in the hospital.

Anyway, at that point they decided to find out what had been causing that whole nearly-brain-poaching fever, and it turns out, it seems to be a kidney infection. You know, the kind of thing caused by a misplaced catheter and orders to have a very, very, very low fluid intake? Grrr.

We got there on Tuesday afternoon to discover that, despite orders that his back-staples come out on the 10th and his cast come off on the 12th, it was now the 16th, and neither had been done. His attending physician came in and let us know they were going to do a CT scan to check for infection. "But," Needlenoggin inquired, "didn't they just do a scan two hours ago?" Of course they had, but the orders for the neck-to-hip scan had been ignored and they'd only scanned his lungs. Irritated, Needlenoggin asked about the cast again, and was assured it was coming off right then. He rolled his eyes, and the doctor seemed surprised he didn't believe her. "I've been promised that this thing was coming off for 6 days," he told her. She then promised that she'd get someone to wheel him in to the cast guy before his CT, in ten minutes or so. After 4 or 5 minutes, my mother and I went out to wrangle the kids so they could ready my brother for his trip down. We were told to come back in an hour or so.

An hour later, I came back in and said, "Hey, you're back!" He turned to face me. "Back?! I haven't gone anywhere!" We went to go find nurses, and they said they'd been waiting for the cast guy to come up and get Needlenoggin (not Standard Operating Procedure). So they called down, and the guy, who'd been waiting for Needlenoggin to be wheeled down to him for over two hours, and he was on his way out for the night to go to dinner. "He can't wait just five minutes?" Needlenoggin implored. My mother talked to the guy and he agreed to cut the thing off. "You're wonderful," she told him. "Yeah, well, tell my wife that. I'm late for our dinner date and she's going to be angry." (We bought his wife flowers and a card the next day).

We got ready to leave that Tuesday night with plans for my mom to head back on Wednesday morning, stay the night, and for us to come get her on Thursday.

"Wait," he said. "Before you go, I have a trick to show you. It is a LOT of work and will tire me out." Here's the trick:

Can you believe it? He says that he's still in loads of pain, and he thinks he's just learned to trigger a spasm to move the leg, but "moving is moving, right?" I'm so pleased for him! (I hate to note this, but this ability to focus all of his strength, to the point of exhaustion, so that for just a few minutes he can force small, uncontrolled movements of his legs, does not make Needlenoggin UN-paralyzed. His prognosis is still grim, and his chances of EVER getting out of a wheelchair, short of this robotic get up:

is very, very, very shoddy. I feel like I have to mention this as two people emailed me to say how happy they are that he's now all better. He isn't. The best part of this news, really, is that it means all the nerves aren't shot, and that he may regain bowel and baldder control sometime in the future.)

The next day we sent my mom down on BART to see him, and she took down the flowers and cookies and candy for the cast guy's wife, Jackie, and the other nurses who aren't hurting him. While she was there on Wednesday, they took out his back staples and started him on antibiotics.

Thursday night, we all came in, and Needlenoggin got to see Rorysaurus:

Made both their days. Rorysaurus also made friends with another patient's girlfriend, and when she'd wander off, we'd find my daughter snuggled up in this young lady's lap. A very sweet family, that one. Little Monkey babbled happily at his uncle, who was mildly disconcerted. "It interacts now?" He asked of Little Monkey. "See what happens when I go away?"

So, now he's on oral antibiotics and, supposedly, his Medi-Cal application has been approved (I'll believe it when I see it, though). As it stands, he should be back at the end of the first week of October, if all of his medications, equipment and paperwork are done AND he's been assigned to a new GP and spinal rehab outpatient center.

Julian is home!

2008-09-20T20:18:00.000-07:00

After Karen and her lovely daughter came to visit in the ICU, Little Monkeystarted acting like he was in more and more pain. For about half the time he was awakem he was smiley and interactive, and had long conversations with "Fire Bear" (one of the toys brought to us by the Oakland fire department).

During these periods, we managed to bring Rorysaurus back in to see him, and she had a great time visiting in her surgeon's scrubs:

Little Monkey was glad to see his sister and even batted keys for his Papa:

Poor little guy then got very, very fussy, and so I held him until his drugs kicked back in.

Tuffy took Rorysaurus out to the little kids' play area and let her run around before heading home. Seriously, is this a GREAT hospital or what?

I had to stay with my monkey baby because he wasn't eating from the bottle anymore, so after a few hours napping while Godmom and/or Tuffy watched at bedside, I had to be with the cute little guy. He was waking every two hours, refusing a bottle, craving his Morphine, and having a very rough time. The nurses, fantastic and wonderful women that they were, helped me figure out why he was in more pain than the last time. Turns out, instead of Morphine and Tylenol with Codeine, he'd just been getting regular infant Tylenol. Orders were written for Ty-Co, and upon reciving his first does, Little Monkey tore out his IV (which was only being used for the morphine at that point anyway). The nurses and I decided not to put the IV back in right away and to see if the Ty-Co worked for his pain, in which case he'd be done with his IV, and would only have his O2 monitor and his heart stickies on. The oral meds worked, and he was able to avoid another needle stick, even at his most swollen:

Almost immediately after the oral meds had started, they moved us to the floor (on Friday morning). He skipped the annex of the ICU this time (the quiet side) and went straight up a whole day earlier. Then, up there, he made lots and lots of friends with student nurses, including this guy who said no one would ever believe he'd been holding a baby:

Friday night, the plastic surgeon came by, checked the baby out, and said he could go home if he wanted. Our pediatrician agreed, and so the neurosurgeon was apged to sign the orders. Eventually, the only thing holding us up was the Rx for his pain meds, which we got and rushed home. The bandages came off once we were home, as per instructions:

The scar looks FANTASTIC, even just a few days post-op, and it is easily hidden by a hat:

Not that it matters when you're looking at his cute little face:

The plan had been to build him "man-brow" but since they worked only on the back of his head, his little face has been left alone. However, a good third of his head has no skull in it, so he's got a soft-spot the size of my hand (fingers included). There may be more surgery for the little dude, but this time around, he did fantastically, and he isn't getting helmeted (at least not as of now).

He's back to his cheery little self, and played quietly in his exersaucer and with Rorysaurus Godmother while we moved little bits of stuff over on the weekend to the new home:

A special thanks to Godmom (as well as her son and daughter-in-law) who came to lift heavy things, clean and cook for us while we were in the hospital.

We made the news again

2008-09-10T22:40:00.000-07:00

Except this time, it was for the WGU scholarship! I went to google to look something up, and found these stories:

Here we are on Yahoo News in a story entitled Her Picture Spoke a Thousand Words and Won a Scholarship. It was also in the Denver Post, Scott Trade's website, individual.com, the Biloxi Sun Herald, University Business Magazine's website and CNBC. I also noticed that Needlenoggin's story got picked up on Remodeling Magazine's Website.

Crazy.

More updates from the hospital

2008-09-10T21:55:00.001-07:00

So, 2 things I forgot to mention last night:

1) Surgery was further delayed (from 1 until 2) because he had a pimple. They were afraid it was chicken pox and so had to have the Infectious Disease guy come and clear Little Monkey for surgery. I was glad to know they were being so careful, but I was so worried.

2) The staff here at Children’s are unbelievable. Competent is a given, but they’ve been so compassionate and loving toward my son and other patients. I was especially struck by one nurse who would pet and quiet and murmur quietly to a severely mentally retarded girl in the post-op area, to soothe her. This girl couldn’t speak, and had been very loud in her vocalizations before surgery, but this nurse was so loving and attentive to her that she quieted down to a soft hum, and seemed calm. I would give anything for my brother to receive care like that.

Anyway, Little Monkey is much, much more active than he was last time, awake more often too (though not in pain…they are wonderful about that here, too). He opens his eyes (not swollen closed yet) and looks around, and can even focus on me.

His arterial line hates him, but that happened last time as well. He ate at 3:30 am, and greedily sucked down 8 fl oz, and then puked up about 3 of them for eating too fast. He didn’t eat for nearly 2 DAYS last time, so this is a real improvement. He’s peeing well and resting comfortably, and his sucker makes him a happy little boy.

He at 4oz at 6:30 and again at 9 am, and between 9 and 3 took in 13oz. Now he doesn’t want the bottle (or his sippy cup) anymore, because he’s a big, gassy mess. He will, however, tear at my shirt, trying to get his preferred food source. Oh, and being the boy he is, after his first big post-operative fart, we got this face:

I know him well enough that I dove for the camera once he started tooting. This kid LOVES to grab his toes and fart, more than almost anything else, so there’s a smile only a little over a day out of surgery.

He’s much less swollen than he was at this point last time, which is great, and he’s active…playing with his bears (the surgical one and the blue one from the Oakland Firefighters) and trying to rip of his little “hat”. He’s also babbling a little too, which is nice.

We met another family, whose daughter is here for a bunch of very serious other issues, who just found out she’s got sagittal cranio as well. I was able to let them know that the cranio is a totally fixable, almost easy (in comparison) issue, and not to worry about it. Poor little thing is 7 months old, half of Little Monkey's weight, and has a tracheotomy and a g-tube, so she’s got a rough time. We brought them a stuffed animal. :) Tomorrow I meet yet another cranio family (this one a planned meeting) before their 2 year old goes in for surgery on Friday. I feel that I need to give back as well as I can after all the kindness, especially from my “internet friends”, that I have been shown.

By the way, one of my Mothertalkers (a liberal mom’s blog loosely associated with Daily Kos) came by with her daughter, brought Rorysaurus a stuffed bear, and snuggled Little Monkey. They were very sweet to drive all the way over here, and it was great to finally meet them in person. I love my internet community!

Little Monkey Update (We made it!)

2008-09-09T23:08:00.000-07:00

On Monday, we went in for a pre-op appointment, and aside from getting cranky when he was stabbed in the hand for a blood-draw, Little Monkey was just fine. They looked at all of his vitals and weight and whatever and determined that yes, indeed, he was ready to be cut on the next day. Whee.

Monday night, we packed up blankets and pictures for the hospital, and made sure we had something fun for Rorysaurusto do the next day (thank you, Amber). We picked up God-mom from the airport and then had dinner with Lisa (hi, Lisa). Then, right before we headed off to bed, we gave Little Monkey a good scrub so he’d be clean for the next day.

We went to sleep, and Little Monkey stayed in bed, snuggled up between Tuffy and I, all night. We woke up around 7, got Rorysaurus dressed, ate breakfast with God-mom and then we took a Sharpie to the back of his head again. This time, we wrote “Fragile.”

We had to stop feeding Little Monkey at 8am, and so by the time we got situated at his pre-op appointment, at 11am, he was a cranky, hungry boy. He asked for “teta” twice, and I had to tell him “no.” Then he started chanting “Mama, Mama” at me, and I felt awful, so I gave him to Tuffy to hold (since Tuffy is not food and is less distracting to Little Monkey). He was not amused.

We sat in the waiting room with a few other families, and met one whose little girl was in for a laproscopic cranio surgery for just the sagittal suture. It means a couple of tiny, tiny holes and a helmet for 3 months, and no one had told them what to expect in terms of swelling, discoloration, pain or care. We talked for an hour or so, and they seemed much more relaxed afterwards.

Then, the surgeons came in. I know that our surgeons are world class, but they are the oddest men, both in entirely different ways. Anyway, they were still arguing about whether the most important aspect of Little Monkey's surgery was repairing his little front bumps or opening up the back of his head, since that hadn’t formed quite right. I couldn’t believe they were still disagreeing, on the date of surgery, in front of us, but it turns out they both just have very strong feelings on how much they could fix in one surgery. They decided to focus on the back and see if any of the front could be fixed this time, but to not be too surprised if we ended up with one more surgery. Bleh. I was so hoping we were done.

Little Monkey played happily on the floor, surrounded by other nervous pre-op parents and kids. We filled out more official paper-work (ick) and read up on how this was going down again. This time, Sue (Dr. Sun’s fantastic nurse) wasn’t around, so we met the male nurse who was doing her job that day. He seemed very nice.

Then we were shuffled off to pre-op, where we waited with the same creepy plaster dinosaur we see every time. We met the nursing team and the anesthesiologist (same one who took care of him last time), and then, somehow, managed to hand him over to them at 1pm.

We walked slowly to the cafeteria, brought out our meals from Home On The Range, heated them up in the microwave, and sat down to eat. Then, we updated Little Monkey's page and worked on Rorysaurus’s page, read Cheers and Jeers and tried napping in shifts. The nurse called once to let us know it was going alright, and of course, we missed the call.

However, our beeper went off at 5:20 pm, a full hour and then some before we were expecting to hear from them. Tuffy started to pack up and I raced up to the 3rd floor to check on Jules. Dr. Toth was there to let me know the surgery had gone beautifully. They only were able to fix the back, but without that added pressure, the bumps in the front had retracted somewhat, so maybe a third surgery wouldn’t be necessary. Little Monkey had needed one unit of blood, less than last time, and the surgeons were all pleased. “He’s a really cute kid,” the surgeon said, smiling, and left.

I went back and got Tuffy, and then we waited around in the staging area until they were ready to let us back into Recovery We got in, and we found this:

Awww, there’s my little bandaged angel. Tuffy then went out to the car to go get Rorysaurus and Rorysaurus’s Godmother, and brought them to the hospital so Rorysaurusvcould see Little Monkey before he got too swollen (although he was much puffier earlier this time than he was last time). While I waited, I made a collage on his hospital crib of his “before”, “surgery” and “after” photos.

Then, in came my hubby, darling little girl, and our magical, beautiful help for the week, Godmom.

Rorysaurus insisted on kissing him over, and over, and over again. She was thrilled to see him…genuinely happy. It did me good to see her so pleased.

Anyway, now the three of them are home, and I’m in the ICU with my sweet little boy, who is alert and loving and beautiful. He’s not quite swollen to blimp-like proportions, so he can still see, but he’s loving being touched and petted and talked to.

Thank you all for your support and prayers. You have no idea how much they mean.

I wish Needlenoggin could go to Little Monkey's hospital

2008-09-08T08:58:00.001-07:00

Seriously. Because Little Monkey's hospital has never let us down, not with Rorysaurus or Little Monkey. They are kind, compassionate and their care is uncompromising.

However, Needlenoggin is too old by a few years, so he was at Highland. After some coaxing, he got a visit by a Patient Advocate. She was able to wrangle up Kristi (a neurologist there who was one of the ones who cared for Needlenoggin before and is a lovely, competent, kind woman) and the attending doctor (Eric something), who came and evaluated Needlenoggin , got him a CT scan and an xray of his arm to determine what was going on with his decreased function, and were able to get Needlenoggin shipped back to Santa Clara Valley Medical Center. This was important, because Needlenoggin had NO physical therapy during his 7 day stay at the county hospital, wasn't taken out of bed once, didn't see a doctor for a four day stretch (although they came and looked at him while he was asleep, they never woke him to talk to him), for a while he was not given his correct medications, and they only did some of his care regimen once in the seven day stay, so he was wracked with pain (when they finally did it on Monday (?), I was on the phone with my mother and could hear him screaming over her voice, the hospital noise and all the nurses).

So, going back to SCVMC seemed like a really, really good idea. When the EMTs came to move him, however, Highland was unable to find a slider board to get him onto the gurney, and took no steps to get one, so, with staples still in his back, the 2 EMTs and 3 nurses had to use TRASH BAGS and his sheet to move his 250lb frame into the gurney, and even with 5 people, they struggled.

However, sometime after his last check at SCVMC (before his 8/29 transfer to Highland), he developed DVT (Deep Vein Thrombosis) clots in both of his legs, which were triggering spasms so violent that he kicked one of his nurses in the chest on Sunday night. They are attempting to dissolve the clots with extra blood thinner, but if that doesn't work, he'll need more surgery. So, he's in severe, severe pain down there, has a uterine tract infection (they assume) and says he feels like he's in an abdominal binder all the time, since he's feeling constriction and is having a hard time breathing. They've reduced his anti-spasm medication and his anti-anxiety medication to half doses because they make him tired and the sleepiness during the day bothered on of his doctors there. (What he explained to me was that after a full day of therapy, he was exhausted and fell asleep. They were unable to wake him and thought he'd fallen into a coma, and rushed him into a CT, only to discover that he was just sleeping soundly. This freaked out one of his doctors, who cut his medication. However, when Needlenoggin was healthy, waking him was a chore, and it would sometimes take me 15 minutes of calling and shaking and pinching to get him up, so this doesn't signal, necessarily, a real problem). He was also not given his anti-depressant at all by the night crew, and while I was down there, was in tears with worry and pain and having panic attacks. I simply cannot see how while they are dealing with these clots and spasms (that cause him to scream and bite his lips until they bleed) sleepy is seen as more of a problem than screaming.

His nurse, ("Evil") gave him one does of pain medication, and when, an hour later, her was screaming, told him she'd just given it to him. She refused to identify his medications to me when she gave them to him, and was defensive and angry. In her whole shift, she hadn't turned him once (to prevent bed-sores) and had yelled at him about watching his fluid intake. He's been on a very, very low fluid regimen (told not to drink his water, only the juice and coke (?) that they bring him with all of his meals) because otherwise his output in a four hour period is over 1000ml. This only presents a problem because the nursing staff doesn't want to empty his bladder more than once in ever 4 hours, not because he's in any way over hydrated, so after yelling at him about drinking all the fluid that they serve him, they put in a continuous catheter. This caused him a lot of pain, and he asked the nurse to check it. She told him it was draining, which meant it must be in properly, and released a little pressure on it so he'd "stop whining." When he complained about his phantom binder, she rebuked him for not remembering that his binder had been taken off. At this point, Needlenoggin told me to take her out of the room, and then told his other caregiver (and asked me to inform the charge nurse) that he would not longer accept any care from "Evil". The charge nurse then took over his care.

When he's not medicated correctly, he can't see or hear little kids (like the on that visits his roommate) without getting very depressed, nor can he see Rorysaurus without getting all worked up and depressed.

Since my visit last night and my mother's repeated phone calls, he has been medicated correctly and has also been cared for by more competent nurses. I discovered that his roommate had previously refused to have this woman care for him, and so she'd then been assigned to my brother.

Oh, and the Medi-Cal paperwork that was sent as a follow up includes a questionnaire about how far he can walk (?!), and he was sent four pages of someone else's application (has a different Social Security number and case file on it) and was not sent a 12 page section of his! No wonder his application is still "PENDING"!

In other news, we took Little Monkey to his pre-op appointment today. His surgery is now scheduled for 12:10 pm, and is expected to be 5 hours long. Poor little guy. He got a little pinprick (blood draw) and other than that this appointment was easy. it will be tomorrow that will be very, very hard, especially since I can't really shake the feeling that I'm going to lose him this time. I worried last time (what parent wouldn't) but I believed we'd get through it. This time, all I can think about is the "what-ifs" and worry that noon tomorrow is the last time I'll see my son.

Keep us in your prayers...we'll need them.

Now It Is Official!

2008-09-04T16:24:00.000-07:00

Today, on September 4, 2008, the three Oakland firemen who responded to Needlenoggin's 911 call (and the officer who brought the toys to Rorysausrus) arrived at his bedside on the 5th floor of Highland Hospital. They presented him with the above plaque, naming him a "citizen hero" and thanking him for his good deed.

They've been trying to get to him for a few eeks, but with him being away in San Jose, they hadn't been able to come. This was the best thing about this trip to Highland (although the other issues involving failure to communicate, verbal abuse and problems with patient care were finally resolved today as well).

If you want to watch the video below, you have to turn up your speaker volume.

Oh, and in Round Peg news, we won our scholarship! This win is due to the passed-along emails from friends and family members to their other friends and family. So, thank you so very, very much to all the people who reposted my vote-begging, and for all of you who viewed it and took the time to pass it along.

We won the scholarship, which will now pay for 75% of my History BA and my credential (I'm working on those concurrently)...and might be able to fund part of Needlenoggin's care.

Neelenoggin update (Part 2, Friday-Tuesday)

2008-09-03T09:46:00.000-07:00

Note: Hold your horses, people! The last update was entitled Part 1 for a reason...I just couldn't type and save and send all at once.

Before we left on Friday, I told the social-worker at the Center that there was NO WAY I was taking him home before the first of the month, or before he had all of his equipment. From independent research (calls to agencies, brochures, etc), I've learned that the in-home-care-personnel issue is a state problem, and not something the Center itself can take care of. Basically, they can't evaluate what he needs at home until he is at home, so IHSS won't come to a nursing facility and start the process. Basically, we get to pay for outside assistance out-of-pocket until they've figured out how much care they will finance. There's no way around this one.

However, as soon as I started talking about nursing homes (since I, by myself, 3 weeks out of surgery wouldn't be able to transfer him from bed to chair without an electronic lift, for example), they started talking about getting the vendors to loan me his equipment pending Medi-Cal payments, and were much more cooperative. And I wasn't bluffing. Until 10/1 AND the promise that all his equipment and medications can come home, I cannot, and will not take him home with me. I'm aware that I have sometimes been rumored to overextend myself a little, but with Little Monkey and me both being recently post-op, and Tuffy back at work, I was being totally honest in my inability to take him. No bluffing and ni lying. Just, "no."

However, given that he now needed surgery, his release date (and my training dates) are sort of up in the air.

So anyway, we gave the people at the Center Needlenoggin's surgeon's info. Then, on Friday, at the advice of a lawyer, took a letter to Highland, saying that we were requesting that his surgeon get a hold of his caregivers at Valley so that any permanent impairment on Needlenoggin's behalf could be avoided. Amazingly enough, the surgeon called Valley that day, they discussed his fluid collection, and decided he needed surgery on Saturday because the fluid buildup could end up pressing on his spinal cord hard enough to cause damage, or could end up pressing on his brain. So, Needlenoggin was tucked into an ambulance and trucked back out here to Highland on Friday night.

Saturday morning we kept trying to reach him before surgery, but couldn't get through (although I discovered later he'd called my phone and left a message), and he was wheeled in to the OR to find the tear in the tissue around his spine that was allowing the leak. (Special awards go to my mom, by the way, for being present and active at Rorysaurus' 3rd birthday party, and letting the Rorysaur know how much her Nana loved her, while Needlenoggin was under the knife. I know how hard it is for me to focus on anything else when Little Monkey is getting cut on, so my mother deserves major, major brownie points for this).

He came out of surgery well, but they hadn't managed to find the leak in any of the layers of tissue around his spine. They decided to just let him recover at Highland and drain for a few days. Then he'll go back to valley, and then he'll get re-assessed (including whether or not his broken arm has healed enough for him to make more Medi-Cal-approved "progress" which would let him stay at Valley even longer (the longer, the better, since he gets care there he'd never get as an out-patient client).

So, that would be the end of the adventure, right?

Not for this family!

We dropped my mom off at the airport on Sunday night so she could return home, rest, and pack back up to come here on 9/8 in time for Little Monkey's craniectomy. So, we drop her off and say goodbye, and head home. Tuffy goes to visit Needlenoggin. And then my mom calls.

From an ambulance. On the way to Highland Hospital.

Seems she was boarding the plane, and getting into her seat, she was using the seat-back ahead of her to maneuver into her seat. the seat reclined without warning, and she spun 180 degrees. Her foot did not, so she tore ligaments in her knee...which will necessitate surgery in her home town. She stayed overnight in the ER, and then went home Monday afternoon.

So, now, of course, I won't have anyone here to watch Rorysaurus while Little Monkey is in surgery. He'll be in pain, hungry (but unable to eat), lonely (but unable to be held) and scared (but unable to see) so I plan on being y his side talking to him the whole stay. Tuffy had planned to spend some time with me, some time with Rorysaurus (so she didn't feel abandoned) and some time packing, since our move-in date is the day Little Monkey gets released from the hospital. Now, for us to even meet in a hallway for a hug or some tears, or to eat a meal together for a week, Little Monkey would have to be left alone.

Seriously...what did any of us ever do to deserve this?

Needlenoggin's Update (Part 1...through Thursday)

2008-09-02T18:51:00.000-07:00

Wow. Let me tell you, I hate red tape. Now, for those of you who know me, this will not surprise you. However, I hadn't really realized how badly the health care system in this country treats poor people, no matter how deserving of care, is beyond me. I mean, Needlenoggin had a job when this happened, but didn't have health coverage because of his previous accident in December, so he's got to wait for Medi-Cal to approve him so that he's not out the hundreds of thousands of dollars his bills have stacked up to just from the ambulance and the first hospital.

Alright, so on Thursday we went down to his center to discuss his discharge plan, figure out his equipment and see what everyone had to do to go abut getting him home. Turns out, especially with his Medi-Cal and CASDI applications still pending (2 weeks after they should have been approved), that his discharge plan was this:

1) He will be provided with a manual wheelchair (that he cannot push due to his broken arm).
2) He will be waiting on the curb for me to pick up on 9/17 (three days after we've been allowed access into the new apartment and 3 days after Julian has come home from the hospital).
3) He will have no lift (to transfer him from his bed to his chair and back), since Medi-Cal has not yet processed.
4) He will have no hospital bed, since Medi-Cal has not yet processed.
5) He will have no shower chair to bathe in, since Medi-Cal has not yet processed.
6) Even though he cannot use a manual chair at all now and won't be strong enough to use one full-time for a long, long time, Medi-Cal will not be paying for an electric wheelchair for him.
7) Even though he will need medications given to him, help getting in an out of bed as well as assistance with all of his self-care and daily-living (at least temporarily), they will not be sending him a a care-giver. I can be trained to do all of these things (sometime between now and the 17th), and in the next 4 to 6 weeks he may be able to get In Home Support Services to come up with funds to hire someone (although they pay very, very little), but that won't be until he is home for a few weeks, and cannot be applied for until Medi-Cal has processed.
8) No, the will not keep him 2 extra weeks until I and Julian are healed from surgery.

We also found out that he has a picket of spinal fluid that has built up in his back, and is causing him to lose sensation in his C8 and T1 registers, and that he is considered impaired at C8 and T1 on one side now. Oh, and he's lost sensation on one whole side of his body, even though he had feeling there when he transferred in. They've apparently been aware of the growing pocket of fluid, but haven't dealt with it because the surgeons at Valley don't want to step on the toes of the surgeons at Highland, and even though they've tried contacting his surgeon through the one pager number they have, have not looked up other phone #s for him, or even his real name, nor have they called me and requested this info. I didn't even know about the fluid issue until Thursday at the meeting.

Grrrrrrrrrrrrrrrrrrrrrrrrr.

It was nice to see him, though.

(BTW, that shirt I bought him was designed by QuadAntics, a designer on cafepress who makes humorous wheelchair items. It reads, "This is not a wheelchair. This is a fully operational battle station.")

Rorysaurus and Round Peg's Updates

2008-08-31T07:28:00.000-07:00

So, Rorysaurus has begun to eat again (she's still lost a lot of weight, but isn't losing more...but will only eat about half of what once would have been a meal for her)and seemed to have a good time at her birthday party this weekend. She's still not back to as potty-trained as she was, and she's up with night terrors every night (after fighting to go to bed until midnight every evening). She's having a rough time, and I can only hope that the move will help her focus on her new room, her new play-space and her new school environment, and stop having such an anxious time dealing with the fall and missing her uncle. She's got a new appointment on Friday at 10 am.

I had an appointment on today to get my other drain out (icky, icky, icky thing), and should be able to stand up straight soon, although I'll be in this binder for another few weeks. I'm nearly out of my pain drugs (unfortunately) which means soon I'll have to deal with the pain and discomfort this causes soon. I've never slept better in my life, though (due to the t4). I've got a general health appointment with my gp on Thursday...the last time I saw her she told me to relax and have less stress in my life. Hee hee hee.

I'll know about the scholarship tomorrow, BTW. I did pass my paper and my class (huzzah!), and am on a short break between semesters.

You can help!

2008-08-27T20:11:00.000-07:00

So, we're muddling through. I'm still on some rather nutty pain medications that make me loopy (and sometimes hallucinatory). It also makes typing and just being ambulatory difficult. I did get my paper submitted, but failed it because I had failed to mention some certain specific criteria. Except I didmention that item and spent two paragraphs detailing it. So, they're re-grading.

At the doc's today I got one of my drains taken out so I'm only leaking icky red/orange goo and tissue from one bulb on one side of me. Joy! I'm still in a binder and under strict orders not to stand up straight for another week, and not to do any heavy lifting for another week after that, but at least I'll be all better by the time Little Monkey gets released from the hospital.

Needlenoggin is doing well, we're still all on pins and needles waiting to see how his Medi-Cal, CASDI and SSI applications are going, and what his discharge plan is (when he's coming home, where to, what his care situation is, etc). We've also got, right now, over $340,000 in medical bills for Needlenoggin here, and a few thousand for Rorysaurus as well. Ick.

However, you can help! I'm in the running for a scholarship (that's right, for those of you who aren't aware, I'm a full-time student right now). The contest consists of a video explaining why you need the cash and how you plan on using it. The video on youtube is here. Click the link, watch the video (or don't) and rate it by clicking on the little stars underneath the video. I'm about 60 votes away from the first place guy (who is a gold-medla winner and a world record holder who wants a scholarship so he can get check "getting a degree" off his list). Vote, please.

Target, Wheelchairs and School Drama

2008-08-22T08:53:00.000-07:00

So, Needlenoggin is wheelchair shopping with his people in rehab. Yay! One less thing I have to figure out (although the bill will come here...they all do). He's going to need a power chair and a bunch of other junk.

By the way, if you'd like to help him out, we've started a small Target registry for him (since he now has his own bathroom and needs big towels and a shower curtain. We'll be adding on sheets when we know what size bed he has, and closet organization items (he can only use the bottom half of closets) once we've moved and can measure.

Really, really, really tired today, and I've failed my paper again (too many different reviewers) so I have to do a re-write to avoid failing out of school. Today. While on crazy pain medication that makes me sleepy or hallucinate. Well, at least the paper will be interesting...

Surgery and Stitches

2008-08-20T20:24:00.000-07:00

So, Monday night I tossed and turned all night, and finally managed to get up at 5 am, shower, kiss the kids on the way out and head to the hospital in SF. We arrived, checked in, and then I got changed into a hospital gown and some weird leg-pressure tights like the ones Needlenoggin wears. Then I was drawn on by my doctor, and knocked out.

I only vaguely remember the recovery room but I know I was there for just a short while before getting brought in to my room around 2:30 in the afternoon. I was exhausted and nearly out cold on Morphine.

Ain't I cute?

They put me in some sequential-massaging leg doohickies to keep my blood moving in my legs, drugged me up and left me alone. I sort of dozed on and off until about 9pm when my nurse, whom I will call Fail, came in. "Time to get up," she told me.

"Excuse me?"

"Time. To. Get. Up. You've been lying down for seven ours now. Time to get up and walk to the bathroom."

"Uh...this seems a little soon, and I can't quite get to sitting in my bed by myself. When I had my C section they..."

"Blood clots. Get up or you'll get a blood clot in your brain and die."

"Are you going to help me sit up?"

"No, you have to do it by yourself. It is going to hurt, but you'll just have to be tough."

"I'm plenty tough, that's not the issue. I was just told not to use the abdominal muscles that have just been sewn together, because I could rip them back apart. Could you get someone a little bigger (nurse Fail was about 80 lbs) to help get me to a sitting position?"

"Use your back to sit up, not your abdominals."

"Um...by definition, sit ups involve the abdominals. I'll just wait until my husband gets here, and he'll help get me sitting up. Is there a reason I've got to be up and moving, using the specific muscles involved in this surgery, so soon after such a big surgery?"

"If you don't get up right now, you'll get a blood clot and die."

Now, Needlenoggin had surgery, a big one, and was in these tights and leg massagers and what-not, and at this point I'm really sure he hasn't thrown a clot and died, and I know it didn't happen within 7 hours of surgery. I try arguing with her, explaining that I am doing the leg and breathing exercises that I was told to do, and that I was pretty sure if my husband could get me to a sitting position, I could stand, although I wasn't sure I could walk to the bathroom. She reiterated her threat of imminent stroke, and told me that she'd been instructed to pull my catheter while I was in recovery ( a lie) and that she'd been nice and let me sleep these few hours, but that she was going to make me get out of bed. I told her she could wait for Tuffy, so she turned off my Morphine.

Needless to say, she doesn't get any praise for being mean and lying. The next set of nurses, Winnie and Lisa, were strict, but compassionate, and helped me stumble to the bathroom, pee, and get back to the bed. Climbing in and out was as painful as it was post-section, and worse than some parts of labor.

So, after getting lectured by Tuffy about not listening to the nurses, since I apparently should have done back-sit-ups and gotten up and walking, I got a few hours of sleep. The doctor came in and okayed my discharge once I was taking the oral pain drugs, and then we tried to call my wonderful driver-friend, Becca. However, my phone wasn't working (died in the hospital), Rorysaurus was making Becca late, and Tufy was at work and sounding peeved at being disturbed. So, we waited outside the emergency entrance (not marked at all) for 1/2 an hour until the chair-pusher told me I'd have to come inside and wait for my driver to arrice, park and check in at the information desk before they'd let me go.

Riiight. My driver had my two, small, squalling kids in the car, and she was going to go pay to park across the street, unload them, come in and find the right desk by magic, and get me, and then trundle us all back out to the car. I told the guy I'd just wait outside in the chair, and he told me he'd been waiting for half an hour, and wouldn't wait longer. "Do you have someone else to go get?"

"No, but this is taking too long. You go inside now."

"I can't. My ride will never find me. I'll wait here. She's on her way, and then I can just get in."

"No! You go inside now. No more waiting outside." At that point, he tried to wrench the chair around so he could push me, even though my hands were on the wheels. I won, as I'm a lot stronger than he'd guessed, and threw on the brakes. He undid one, and I re-did it as he went all the way around me to undo the other brake. Then, he went for backup.

Out comes security guard #2. "You've got to go inside until your ride arrives."

"My ride is on her way, with two small children in the van, to a hospital she's never been to before. She only knows the name of the street that this little parking lot is on, and won't find it if no one is out here. My phone is dead, so I can't call her and give her more clear directions, and she won't even know to come in to any desk. I'd like to wait a little bit longer."

"No. You have to go inside. If your ride never gets here, we'll get you to call someone else. What if your ride never comes?"

"What if you out me inside where she never finds me? I'll stay out here." This forced these two men to begin planning how best to wrench my hands from the wheelchair wheels in order to force me, against my will, back into the hospital. Luckily enough, that's when Becca came to the rescue.

So, we got home, and Becca cooked for us, and Rorysaurus' Godmother Annie arrived, and a good time was had by all. However, Wednesday night, I tried to lay on my side in bed to feed Little Monkey, and tore out some stitches. See, here's the injury:

(a hip-to-hip cut...icky, I know)

This is where the drain attaches on my right side. When the stitches tore, the opened up a hole in me about as long as my little finger, and just as wide. Hurt like hell, so I used paper-tape and closed it. Then I made an appointment to go in and see the doctor on Thursday morning.

The bulb there is collecting about 260 ccs of icky bloody fluid a day...

So, we drove out at 7 something on Thursday morning and got me 10 stitches (without pain killers) and I was told how to pull out the anaesthetic pump that was left in my guts sometime today when it runs out of juice (just pulled all 3 feet of tubing out of my belly). I hurt like hell, and the kids just want to be held and loved and poor Tuffy is getting the short end of the too-exhausted-to-move stick, and I can't get in and out of bed by myself.

Becca has gone home (flew all the way here from Seattle so she could help for 2 days), but Annie is still here and so is Tuffy's little cousin.

Birthday and Bureaucracy

2008-08-18T08:40:00.000-07:00

So, Today is Rorysaurus' third birthday. Crazy. However, since tomorrow is my surgery and she's got PTSD therapy today, we went to see Needlenoggin yesterday.

It was a weekend, so the center was understaffed, and it was hard to get people to help get him in his chair. We were there for two hours before he had his blood pressure medication and got into his chair, which was frustrating to say the least. The kids were both ready to go home by the time he even got out.

Eventully, though, we were able to eat lunch, go for a roll around the grounds and have cake. We got to sing to Rorysaurus as well.

(Yes, that is a homemade Batman Beyond cake)

(Needlenoggin and Rorysaurus seemed to like it).

Then we packed back up into the van and headed home. i won't be seeing Needlenoggin again for over a week, since I've got surgery tomorrow.

Here's my biggest irritation. There's no one in charge of all of this crap. The Center wants to send him home on 9/2, but no one has called us to tell us that. At the hospital, we were told he'd need a regular bed, but the Center has told Needlenoggin that he'll need a hospital bed for the 6-8 weeks he's home, and who knows after that. Oh, and because of his neck-brace, the wheelchair he's in at the Center (which may or may not be coming home with him temporarily, whenever he comes home) makes him FOUR INCHES too tall for a standard wheel-chair van. They are supposed to hold a family training and a transportation class for us *sometime* before he gets out, but no one has told me anything at all yet, and I'm the one trying to make sure he has a roof over his &#@%ing head and someone capable of caring for him when he gets home. In Home Support Services should be providing him with a caregiver, but he needs CASDI (California State Disability Insurance) and SSI (State Supplemental Income) and his Medical clearance before that can happen, and those papers should have arrived a week or more ago. Who is in charge of this nonsense?

Each state should have a book of the people to call to get his figured out. While I'm not really one for government intrusion, I'd happily pay more of my taxes out if I could talk to one central paralysis person and get all this crap straightened out.

/rant

Alright, now that that is out of the way, I'm going to go feed Little Monkey and pack up for tomorrow. Big day and all.

South Bay Spinal Center

2008-08-13T08:07:00.000-07:00

So, we went down to visit Needlenoggin last night, and went through the whole process of loading the kids in the car and heading down to San Jose. We got there around eight o'clock in the evening, and (thankfully) had no trouble at all signing Rorysaurus (and Little Monkey) in as visitors. In fact, the nurses were thrilled to see Rorysaurus, as most of them had heard some version of the story before.

So, we got into the room, and plunked her down on the bed next to Needlenoggin. We got this picture (which aside from the AWESOME Batman cape, is a lot like all our other recent hospital photos):

Special thanks for that Batman cape are due, as our upstairs housemates sewed it for her as a birthday gift. I'll have to get a good picture of her with the reverse side out...too cool).

Then, the nurses had to do nursing stuff, and we headed out to the day-room to wait. Imagine our surprise when we were greeted at the door by Needlenoggin himself, ready to take us on a tour of the place.

(Note that Little Monkey is actually on my back, but cannot be seen)

So, Rory got up on Needlenoggin's lap, and we tooled around.

Oh yeah, he's awesome. So, he showed us the gym, talked about the very cool support group they'd had on Monday, and drove us around the outside of the place back to our car. It was lovely at the center, and we got to see our first helicopter landing as a Medi-vac came into the helipad there. We've got a bunch of logistical issues (like the fact that they want to split his rehab (due to the broken arm) and so want him to come home 2 weeks before I have a place for him to go), but the visit was fantastic.

He said he's lost some of the sensation he'd gained back at the other hospital, and that his right side it totally and completely numb. The left side remains the same except for some sever pain from a pinched nerve in his hip. We'll have a better prognosis on the broken wrist in a few days. He has a new neck-brace-collar-thing, which works better but is apparently much less comfortable.

He is, however, up for hours at a time now (4 to 5) and went out to a restaurant for dinner with some of his new buddies (they had ribs at a local BBQ joint).

He can even do tricks!

Anyway, everyone kissed him goodbye:

And he made (at my insistence) a cheesy "Hi, Mom" video.

So, there you have it. I've got to reschedule Rorysaurus for her next PTSD appointment (still whining and bed-wetting, but she's finally eating again) and make a bunch of phone calls (most of which I can also do from bed next week).

Can we fit one more in?

2008-08-12T06:26:00.000-07:00

Surgery, that is.

Okay, here's the basic story. When I was pregnant with Rorysaurus, I got huge. I didn't gain a lot of weight, but was unable to drive near the end, because my belly prevented me from reaching the pedals and the steering wheel at the same time.

I worked my butt off and lost all the weight but still was having a hard time fitting into my regular clothes. Oh well, whatever.

Then, I got pregnant with Little Monkey. By 15 weeks, I looked like this:

And by 32 weeks, I was using a cane, wearing a belly brace and had still only gained 15 lbs. I was here:

Turns out, when the Rorysaur was in there, she tore my abdominal muscles apart, so there wasn't much holding Little Monkey in. This made it even harder than it would have been otherwise to get him out, since my abs couldn't do their job, and was the cause of the really bad back labor I had with both births.

I was expecting it to go back to normal afterwards, but my swayback and back pain got worse and worse, and I was cautioned not to lift anything over 25lbs. I was ready to ignore it. However, when doing a sit-up, my midwife could fit her whole little hand between my abs, and could feel the intestines underneath so, my GP and I found me some physical therapy and I joined a gym, and got stronger and lost a lot of weight. No progress on the diastasis recti, though. In fact, if anything, it has seemed to get worse. I can't stand up straight, and my back just aches. The GP finally told me to go get a surgical consultation.

So, back in early July, before all of this new drama started, I scheduled a consult. In desperate need of a few hours of peace and quiet, I left the midgets with my friend Kristin (here from out of state to watch the kiddos and help pack), andheaded in to San Fran for the consult. We (the GP, surgeon and I) had been figuring on the surgery sometime this late fall or winter, but two pressing things had happened since then.

1) Little Monkey is 22lbs. This means the amount of time I have where I'm not further injuring my back has shrunk a little, and

2) I'm going to need to be able to help transition Needlenoggin from chair to bed to other chair. Not necessarily all the time, and it won't be that I'm lifing him myself, but I will be helping move someone much larger than my 22lb son and 36lb daughter.

The surgeon wanted me to do the surgery with enough time before Needlenoggin's return to be back to normal activities, but, she was booked until November. So, I went to the assistant's office and started the scheduling process. Then, low and behld, a cancellation! So, my surgery is a week from today. 8/19.

I'll be in the hospital in SF for a night, and then come home to nearly bedrest for a week (only some light walking, no lifting (even of the kids)). I'll have drains in for a while, and will have to do all of Little Monkey's care in bed. However, I will have Tuffy's cousin here to help with the Rorysaur, as well as (possibly) Rorysaurus' Godmother. The week after that, Tuffy should be off pending Little Moneky's surgery, and then the big Neurosurgery itself. Then we'll be taking a week off to move into the new place, and then Needlenoggin should be arriving home.

Nuts? Yeah,of course. However, I'll have a little help, hubby will be home some and my mom will be up for a little bit as well, and when else would I be able to get so many people in here to help us?

Finally some good news

2008-08-10T06:53:00.000-07:00

So, Friday morning Rorysaurus, Little Monkey and I managed to get into Needlenoggin's hospital room. It wasn't easy, as they have a "no visitors under 14" policy, and Rorysaurus was a) dressed as Batman and b) wearing red leather clogs. However, his doctors and nurses knew we were coming and all managed to be looking somewhere else when we arrived. :)

Anyway, we got a chance to hang out and see Needlenoggin before the EMTs were scheduled to arrive. Unlike the last few times when Rorysaurus has been a little hesitant, this time she very happily hopped up in the hospital bed with her uncle.

They were thrilled to get to cuddle and watch a movie on his DVD player while we waited (a special thanks to his work buddies who brought him that and the DVDs he watched throughout his hospital stay. It allowed him some entertainment in the ICU and saved him from telenovelas and bad game shows in the TCU).

It was good. The EMTs showed up, told him they'd let him watch movies in the ambulance, and laughed and joked with him. Once the guys heard what he's done, they told him he should work for the fire department! He was all smiles as Rorysaurus kissed him good-bye and he headed out to Santa Clara. When told Little Monkey would miss him as well, he rolled his eyes in a good-natured fashion, so nothing has changed there.

My Fairy Godmother (she's magic and grants wishes) arrived right as they were wheeling him away, and she hopped in the car with us as we headed out. I really need to express my undying thankfulness to her and to Crystal, my good friend from high school, for coming up here. Godmom has two kids of her own and a job, and flew up for the weekend, and this week simply wouldn't have been possible without Crystal. She's just gotten over the worst year ever (as bad as ours has been, maybe) and flew all the way out here from Florida to watch the monsters so I could get back and forth to the hospital and run errands.

Then we were off to Rorysaurus' PTSD appointment. She worked really, really, really hard, taking toys off of shelves and throwing them on the floor, and tucking everything in sight under a blanket to "help them get better." We then went over the whole story of her fall, and reminded her that it wasn't her fault and that Uncle Needlenoggin was happy so she was allowed to be happy and play as well. The "not your fault" meme really stuck with her, and she's been repeating it. She also told the doctor that her uncle "bwoke his back in five pwaces," so at least we know she's listening, right?

We got some suggestions for home, a diagnosis, and another appointment for Monday. Then we came home, slept and made about a dozen phone calls about places to live. Wheelchair access is really, really sketchy in older places, and newer ones are just so expensive. This is the Bay, so most 3 bedroom places are $2000 a month anyway, and if you factor out walk-ups, you're looking at a $2500 average.

Right before bed, Tuffy finally got home from work, and Rorysaurus' package arrived in the mail. We unpacked it and, presto! a chair for Lizabeth!

Rorysaurus spent the rest of her night wheeling Lizbeth around the house, putting her in bed, and checking her heart with clips and wires. Maybe she'll grow up to be a doctor?

Saturday dawned way too early, but we were up and running with the last of our coffee. Despondently, I refreshed craigslist, and started up my so-far-utterly-futile apartment search. I opened up a half dozen ads, and started writing my 56th email. I'd sent out 50 over the last 2 weeks, and made more phone calls than I care to count, and had recived back three responses. So, when I opened up the ad entitled "3 bedrooms in Emeryville for $2300", I knew I was in for yet another converted Victorian with skinny doorways that I'd have to retrofit for Needlenoggin.

Instead, I found this:

Whaaa? So, Tuffy and I drove over and did the application. This place is way out of our price range, but then again, so are all the first-floor apartments and ones in elevator buildings. This one has a court-yard and a pool and BBQ area, and a bathroom with a shower that Needlenoggin can roll into. Of course, Tuffy and I actually looked at this building a few years ago and couldn't afford it, so we were hesitant. We applied, because we have enough in savings that we had planned to use for Rorysaurus to go to preschool and to pay for my teacher's credential that will cover the difference.

It is four blocks, maybe five, to Needlenoggin's job and 6 blocks to Tuffy's. Emeryville is also flat, so biking is way, way, way easier than living in Oakland.

Here's the floorplan:

And...

It looks like we were approved to rent the place! So, now we will at least be able to have a home for Needlenoggin for the next 12 months. The buildings, courtyard, elevators and the apartment itself are wheelchair accessible and they're familiar with service dogs (which we will probably end up with). So, one problem solved.

Oh, and talking to Needlenoggin at night, I was told he's really working his booty off in rehab, and was able to sit up for 40 minutes in a chair. They have support hose and an abdominal compressor that keep his blood in his upper body (so he doesn't pass out) and he spends an hour on and an hour off every day doing PT from 8am to 5 pm. So, he's progressing well!

Moving on out!

2008-08-07T05:39:00.001-07:00

Well, Needlenoggin's doing as well as can be expected. He's moved in to the TCU, and is working his numb little butt off. :)

Most exciting is the news that on Tuesday, they sat him up, and told him they were hoping he'd be able to sit for 90 seconds. He did it for 4 minutes. Wednesday, he even was able to sit upright in a chair for 15 minutes! He also is sore in his abdomen from all that balancing upright, which is good, because at least he's feeling something. We're still hoping that he'll regain all of his sensation.

He's doing so well, it looks like they are going to transfer him to the Spinal Cord Injury Program at Santa Clara Valley Medical Center. This is the premier center for spinal injury in the state, so we're more than thrilled that they have a space that fits him.

The only issue I can see about the Spinal Center is that they don't seem to allow visitors under the age of 14. 30-60 days without seeing Rorysaurus would be very, very hard on Needlenoggin, so keep your fingers crossed that there's a way around that policy (having him meet us in the lobby or something). If worst comes to worst, we'll try and set him up with SKYPE (a webcam service) there, and have them talk that way, but I know he loves her hugs and snuggles.

All the center needs us to do now is find him a home to discharge into. ::sigh::

Needlenoggin also has a benevolent account set up through Washington Mutual, now. What this means is that anyone can go into any Washington Mutual in the country and deposit money into account # 3171400381, and it will go towards the van, mobility equipment, wheelchairs and his drastically increased rent. Donations can also be mailed to the Washington Mutual Emeryville Financial Center at 5747 CHRISTIE AVE
in EMERYVILLE, CA 94608-2412. Just include a note saying that the money is to be deposited in account # 3171400381. The donations aren't tax deductible, but they are appreciated.

We took candy (provided by our friend Jessi's mother-in-law, Carol) to his ICU nurses, and took flowers and milk-chocolate seashells to his FANTASTIC surgeon, warm doctor and favorite nurse. He signed all their cards with his left hand (since the right is broken) and while rudimentary, the writing was legible.

Rorysaurus and I (with help from our babysitter) got Fabric paint and made him a shirt for his transfer out to the rehab center, since he'll be leaving tonight or tomorrow and has to wear clothes again. :)

And a special thanks to Fr. Al for his loan of Beethoven the doggy-puppet. Needlenoggin is pleased and amused that he has such a soft little animal to love.

Please keep all of the works-in-progress (we're trying to visit a new apartment this week, and our folks are supposed to look at a van in the next few days as well) in your thoughts and prayers.

Good news

2008-08-04T15:53:00.000-07:00

Hooray! I am happy to report that Needlenoggin's spinal drain is out! As of sometime tonight, he'11 have been moved to the TCU (Trauma Care Unit), where there's a little more room, fewer beeping machines, and a TV. Still, I'm sure he'll miss the ICU...his room is so awesomely decorated. Notice a theme?

Rorysaurus has been scheduled for her first PTSD therapy appointment on Friday at 11 am. She's begun climbing into my lap to tell me that she's a baby, and pretending to act like Little Monkey. She even drooled on the floor to make her point. :p

Oh, and checkout the video. Most of thse movement is involuntary but two twitches are him busting his butt.

Good news, bad news

2008-08-04T11:26:00.001-07:00

The good news is that Needlenoggin is doing well in that he is in higher spirits than ever and far more coherent. The “ICU psychosis” seems to have passed, and while he is very sleepy and in come pain, he is ready to get off of the ICU floor. Next, they said they will move him to the TCU, and then it will be off to rehab in a week or so. He has minor sensation in parts of his lower legs (if poked hard enough, he feels the pressure on his muscles as warmth), and has some reflexes when pinched and poked. Also, with much straining (enough to break a sweat over the course of nearly 5 minutes), he is able to twitch one toe on his right foot a millimeter or two (!!!!!) They are hoping to take out his spinal drain today and move him in the next 24 hours.

The bad news is that Rorysaurus isn't doing so hot. She still is refusing food most of the time, and isn't sleeping in any kind of a normal manner. Her re-enactments of the accident are getting scarier and more upsetting (they now involve loud “breaking” noises, and she talks about blood and “owies” constantly). She’s also still not sleeping correctly, and has gone 16 or 20 hours at a stretch without eating. I still haven’t sent her back to school, because I’m afraid she’ll be too much of a nuisance, and that she’ll be too scared, whichmeans she is home allthe time, and whining or crying unless she's got Plaza Sesamo or Blue's Clues on. :( I am really worried about her.

Diapers!

2008-08-02T18:52:00.000-07:00

Wow. Bay area people are the best! We can't do laundry right now, so we've stopped using the cloth diapers temporarily. However, they're expensive, so we put up a request on freecycle (like a free craigslist that tries to keep stuff out of the landfill) asking for diapers in size 4 or 5. This is what we got:

I'm amazed at the lengths perfect strangers will go to for folks in need.

In Needlenoggin news, he's awake and feeling much better. He was asleep when I went today, but woke up, talked about housing plans, and smiled at the silliness of Rorysaurus' latest song. High spirits and no hallucinations, although it seems he was hearing a few sounds that weren't there earlier today, his nurse reported. Not bad, all things considered.

Oh, and Rorysaurus has decided that she can save things from falling by "airbending" (a term for elemental magic from a show she watches with Needlenoggin). Very cute to watch her tr to move the air to her will.

I was telling a friend today that in our home alone, this year, we've seen more surgeon's bills than the average cost of a home in the US, and close to what my grandmother's Souther California home sold for just a few years ago. Bring on Universal Health Care!

Awww, thank you Reebles!

2008-08-02T11:40:00.000-07:00

The donation sites for Needlenoggin and Little Monkey are hosted at Reebles.com. Well, on their main page, Reebles has a link to their corporate blog, and they've picked up the story and have it as their top blog post here.

Needlenoggin's reflexes continue to exist, and he's able to feel pressure, if not touch, in a few points on his lower half.

Rorysaurus is throwing up bile (probably due to her refusal to eat), but is otherwise the same. We're trying some soup tonight.

Wish us luck on the home/van/wheelchair hunt!

Bad headline

2008-07-31T07:50:00.001-07:00

So, the headline at OaklandTribune.com reads: Family blames landlord for accident that paralyzed man. However, if you read the article (well written by Ms. Woodall), you'll notice that none of our statements say anything to that effect.

However, in the real paper, the article is titled "Hero Paralyzed; Man falls as rotten landing crumbles." Weirdly enough, the type is exactly the same. Here is what the newspaper article looked like:

Doesn't Tuffy look great? Anyway, we're getting a copy framed for Needlenoggin, and sending a few to family as well.

Update on NeedleNoggin

2008-07-30T13:24:00.000-07:00

Tuffy bought Rorysaurus a ukelele, and she wrote a little song for Needlenoggin on it. It has become instant "music therapy" as she's constantly writing songs (many of which are VERY morbid) and dancing around. Getting it out is good, right? Here she is playing (notice the mention of "cuts and bruises") for him.

Also, when visited last night, Needlenoggin was aware and lucid and devoid of hallucinations (yay!). He laughed at Red vs Blue and enjoyed Rorysaurus's little song. He also was quite taken with his news story.

And, if you pinch his toes, his calves twitch. It is spasmodic and he can't feel it, so we're only talking about maybe a reflex, but still, that's something. Hooray! He hugged Tuffy and I when I left and made sure to ask about the Oakland Tribune article that will be out today. Don't know what that says yet, but hopefully it'll be complimentary. he wants it framed.

Oh, and two notes:

Yes, the lawyer knows I'm blogging, and save things specific to the lawsuit, he doesn't much care. Thanks for the heads-up. :)

Thanks for all the support on therapy for Rorysaurus. I do know it is good for her, but there's just something odd about therapy for a preverbal kid. Then again, I know that is my wry amusement, not a good reason to avoid it, so she goes in for her referral tomorrow. She's had a really rough month, and if singing and painting (while I get a quiet 30 minutes in the waiting room) is what she needs, I'm all for it.

Rorysaurus Catchup

2008-07-29T17:26:00.000-07:00

So, Rorysaurus has trauma. At first, she was pretty calm about the whole thing, telling strangers she'd fallen down with her uncle and all. Then, she found a picture her grandmother had drawn for her, and edited it.

Those are tears she's drawn on "her" face. "This is me. I'm crying." She went on to try and draw on her doll, Elizabeth, so she could cry as well. Fine, fair enough.

Then, Elizabeth lost her legs.

"So she can't walk." That's right, she's tearing the legs off of her dollies so they can't walk. She also holds imaginary conversations with people on her toy phone, telling them she has "cuts and bwuises." Oh, and she'll lay under her bunkbed clutching her Batman doll to her chest, and say "We fell. Go get help."

And her "painting" of Batman. First she painted him blue, and then decorated him in red.

"He's bleeding," she tells us. She cries, wakes up in a cold sweat with nightmares and won't leave Needlenoggin's room. She's never been a snuggly child, but now she's demanding to be carried and held, and weeping at the drop of, well, anything.

Oh, and she got a Doodlebear (a bear you draw on) from the fire guys. She draws owies and band-aids on it, and throws it down the front stairs. "You can't feel your belly. It hurts you!" (Needlenoggin was crying out that he couldn't feel his belly when he was waiting for the paramedics).

Getting near the back stairs (the door nearest the bathroom) has caused her to cry out that the stairs scare her, and to refuse to be consoled for 45 minutes and to assume the fetal position.

::sigh::

So, our wonderful, beautiful and perfect pediatrician is sending her out to a pre-verbal PTSD specialist. I feel a little Berkeley for sending my 2 year old the therapy, but what can I do? She's scared and haunted and horrified.

Needlenoggin Catchup

2008-07-29T16:51:00.000-07:00

On Tuesday 7/22, I picked up my folks at the airport. They got to see Needlenoggin for a bit, then slept for a while. Needlenoggin went in for a spinal fusion surgery, and to have his shattered arm reduced (forcibly limit the swelling so it could be set and splinted). The surgery went on for hours longer than planned, but at 3 am we were able to see him.

Rorysaurus went in to kiss him, and our folks got to see him. It was rough on everyone. The next day he was sarcastic and pleasant, and we did our first lawyer contact. Same plan, basically, Thrusday through Saturday. Needlenoggin has a clot in his kidney that required a drug-adjustment, and he's battling ICU induced psychosis due to a lack of sleep. He now has two black eyes and looks like hell.

We were allowed to take Rorysaurus in to see him, and she was a little afraid of the doctors. She wanted to take Needlenoggin home, and so kissed his owies and tried to drag the bed out with her. When he couldn't come, she started to cry. More on that in the next post.

Anyway, he's lucid and they're going to try to remove his spinal drain and take him off the dopamine tonight or tomorrow. They're hooking him back up onto his CPAP (his machine for his sleep apnea) to see about getting him some more rest, and they've scrounged up a TV for him. He's hurting and lonely, but he needs to rest and I simply can't be there all the time.

On Friday, I simply couldn't take it any longer, and took a baby wipe and cleaned the bits of Needlenoggin's scalp away from the accident site. It was disgusting, and hard to do. his blood is still on the ground, his sandals where they fell.

Also, I've been to the Center for Independent Living and have been told he needs to apply for SSI, CASDI and EDD, as well as Medicare/Cal. Those will probably be done tomorrow. I need to get a notary over to get the power-of-attorney singed so I can sell his bike and sign a lease for him. I also will have to get rid of some parking tickets. :p

Oh, and the Oakland Fire Department came by the house with some toys and good wishes. They were horrified that the boards that gave way were swinging in the wind above our laundry room still. We were advised to call the Oakland PD to request a HAZMAT cleanup (the blood is a biohazard), which I will be doing tomorrow.

On the News!

2008-07-29T16:16:00.000-07:00

So, Needlenoggin is in high spirits, has been battling a fever and having some more trouble with his lung contusion. He's stretching and doing his exercises divergently. He's on a new pain medication that is making him a little loopy, but is going to sleep tonight. His paternal grandmother, aunt and uncle came to visit today, which was nice.

We've had an outpouring of love and support here, with some DELICIOUS food getting delivered to Tuffy and I, and some of my "internet friends" coming to babysit the kids for a few hours so I can finish up my semester.

Oh, and his story made the news.

Click to see the video (not on Youtube yet). There's an ad you need to sit through.

We're still waiting for an article in the local paper (should be out in 1 or 2 days).

The other version

2008-07-29T16:13:00.000-07:00

Here's the one I wrote:

Our third story landing collapsed today while my brother was taking Roy downstairs for some play time. He wrapped him self around her and held her as they fell. She escaped with minor cuts and bruises...any other way and she would be dead.

And I thought Little Monkey's ordeal was our biggest of the year. Needlenoggin won't be able to come back home here, and so will need a new place to live and a caretaker. We're seeing about the apartment downstairs (soon to be vacant). Anyone know a good lawyer in the SF Bay? Our landlord knew about the rickety stairs and did nothing to address the issue, and now my baby brother won't ever walk again.

It was almost Tuffy and Little Monkey, but they turned back to get something from the house. Oh God, my poor brother.

(and the one a few days later)

Needlenoggin went in for open-spine back surgery at 5pm on 7/22. It was supposed to be a 5 hour surgery, and stretched into 8 hours. They had to remove all the shards of vertebra from his back, and they'd planned to take bone from his hip to graft into the repairs, but were able to just use bone putty, steel rods and screws to shore him up. The top two vertebra were left alone, and will heal on their own (he's in a neck brace, but that is a temporary thing).

He has no sensation from his breastbone to his feet, although he can sense ice on his skin on his upper legs and pinpricks on his right toes. The doctors are pleased, but say tat this only makes it possible that he will be able to move at all. There is really no real chance of him ever walking again.

The building inspector came and condemned the stairs (closing the door after the horse is gone much?), making it impossible for two of the buildings four apartments to be accessed. One woman was in her apartment when the stairs were condemned, and so is in a legal quandry about leaving her home. The other apartment's tenants have had to undo a previous (seemingly illegal)remodel, and are climbing through our closet into their apartment above. We've given them keys, because otherwise, there is no way to get to their home. There apparently was a complaint in 2005 about the stairs, and nothing was done.

We've called a lawyer, and are meeting with him, an investigator and a reporter for the Oakland Tribune on Thursday and Friday mornings. I'll need to email those of you in the Bay about the next weeks' schedules as the kids are not allowed to visit in the ICU (although one of the neurologists broke the rule and let Rory come kiss him today). But, a I am his power of attorney since both his hands are broken, I need to be there for at least a few hours every day.

Crap. This sucks so much. He is in high, if sarcastic spirits, and understands his prognosis. In the next six to eight weeks we have to find a new home (one that is wheel-chair accessible) and move, as well as find and buy a van with a wheel-chair bay. We also have to sell his motorcycle and will get him on the list for a companion animal.

For Starters

2008-07-29T15:08:00.000-07:00

Here's where we're coming from, in case you've missed the last 5 years. This was written by Tuffy a few days ago:

I'm pretty sure my daughter Rorysaurus is traumatized for life after the last couple years. She's almost three, and waaaay too familiar with hospitals. It started in January of '07, when she got a staph infection; basically flesh-eating bacteria. We took her to the emergency room when she developed a fever and a pimple on her leg turned into a swollen area the size of my wife's palm. The emergency room sent us home with the wrong antibiotic, and said to contact her pediatrician within the next three days or so.

In the morning she wasn't any better than when we'd left the hospital, so I demanded a same-day appointment with the pediatrician. Apparently, if we'd waited for day two, she'd have lost the leg, and if we'd waited to day three, she probably wouldn't have made it.

It gets worse. Skull surgeries and broken vertebrae abound.
Here's Rorysaurus :

So we got her taken care of, and aside from how the abnormal growth of scar tissue around the drain port they put in at the "pimple," she was fine. It had only eaten away at some fat tissue, but if it had made its way to muscle, bone, or connective tissue, we'd have had big problems. We had a surgery this year to take care of the scar, and now it looks like a small fingernail-clipping sized irregularity. The insurance fight lasted over a year.
So after the flesh eating bacteria, it was fairly normal for a while. I had a surgery for a hernia, but overall, medically, things were going ok. My wife was getting more and more pregnant, and just a few days before my son was born in December, my brother-in-law, who'd just moved in with us in October, got hit on his motorcycle. It crushed his ankle and put him out of work for months. With crutches, and later a cane, he was eventually able to return to work. Here's Needlenoggin , playing with Rorysaurus after he recovered.
Then my son was born a few days after Needlenoggin 's accident. Here's Little Monkey:

He had a bit of a funny shaped head, but the doctors told us not to worry. I think they were just being kind, giving us time to snuggle and love him, because at his 5 day checkup, we were asked to give him a CT scan, and told he had Craniosynostosis. What this means is that the bones of his skull had fused prematurely in four of the six places it could have done so (these places are called sutures), and would crush his brain as it grew unless we had surgery to break up and reshape his head. It was weeks of hell waiting for the surgery, not knowing if he also had one of the syndromes for which craniosynostosis is simply a particularly hellacious symptom. Turns out that although Cranio on more than one suture very rarely happens without one of these horrific genetic disorders. we were lucky. He's a fluke. No disorder, just a healthy baby with a messed up head.

His surgery was in January of '08, and it happened not a week too early. His brain showed signs of stress that weren't visible in the imaging, and holes were worn in the dura, the layer of padding that protects the brain. He was ok. He's happy and healthy and is getting new teeth. Here he is now, posing before an image of what his skull looked like before they fixed it.

Unfortunately, at the checkup appointment with the pediatric neurosurgeon in which we took that photo, we learned he'll need another surgery. September ninth is the date. We have insurance, but my wife set up a donation site here if anyone would like to contribute to all of the associated costs. Even with insurance, this shit ain't cheap (over $70,000 a surgery). If you would like to help, we could use babysitting, casseroles or a couple of bucks.

And that brings us to this week. Sunday night, a neighbor hit our parked car. Nobody was in it, nobody was injured, but I went to work Monday feeling miserable and pissed off. Needlenoggin had spent part of his weekend digging out a flat place in our yard for a new little playhouse to sit, and then spent Monday morning before he left for work playing with Rorysaurus in it. It must have felt so good to have that mobility back again.

Monday evening, I got home before Needlenoggin and decided I'd like to take Rorysaurus downstairs and play with her there myself. My wife said she was going to go run some errands, so I was in charge of both kids, and Needlenoggin got home shortly after she'd left. I told Needlenoggin what the plan was and started to head out the back door to the old staircase that winds down the side of the old Victorian house we share with 3 other apartment units, while he was getting changed out of his work uniform and would join me momentarily.

I paused in heading out with the two kids, and decided Little Monkeyneeded something warmer, since it was getting on into evening, though still bright and sunny. Dressing a baby can take a few minutes, so -- God, I'm crying as I write this -- I turned back to dress him properly. I sat down in his room, and was snapping on his outfit when I heard the crash.

Neighbors were shouting, 9-11 got at least eight different phone calls. I looked out the back door and everything seemed normal, until I looked to my feet. The landing outside our door wasn't quite there anymore. It had become a trap door that swung open under Needlenoggin's weight. I looked down from our second story apartment and saw him bleeding and crumpled at basement level, and I had no idea where my daughter was. He'd picked her up and headed out the door, and she wasn't there.

Apparently, he had grabbed her close, tucked, and rolled to ensure that she landed on top of him. By the time I'd looked out the door, she'd gotten up and run to our neighbor's door for help. Scratches and bruises are all she got from it.

Needlenoggin broke his back in six places saving her life. He will almost certainly never walk again. He was refusing treatment until certain that she was taken care of, but she'd been taken to a different hospital, one able to deal with children. My wife reassured him that she was ok, under observation just long enough to ensure there was no head trauma, no internal bleeding or other issues, and he relented.

I don't really know how to end this story. It hasn't ended yet. His parents flew up and waited through his eight hour surgery to see him at 2 am. Rorysaurus saw him, too, tubes, hoses, monitors and all, and has yet another strong imprint of hospital drama in her mind. We're hiring a lawyer, and we're advised to hire an investigator as well. We have to move in the next two months to a wheel-chair accessible place, buy a lift-equipped van and a wheelchair. He has no insurance, and yes, I know some of that will get re-paid after the lawsuit, but who knows when that will happen. All of this has to get done by my wife, with two kids, while she preps for Little Monkey's surgery, so if you'd like to help out our hero, here's that link, too. We'll see where it goes.