Saturday, November 21, 2009

Flu

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.

Wednesday, November 18, 2009

I need your help. I want to build something.

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.

Thursday, October 22, 2009

We Need House

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

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?

Thursday, October 15, 2009

Rorysaurus Update

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.

Tuesday, October 6, 2009

The BORP ride

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.

Monday, September 28, 2009

Firefighters and Ice Cream

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!

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.

Tuesday, August 25, 2009

Legal Wrangling Ends!

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.

Thursday, August 13, 2009

Hit and Run

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.

Wednesday, August 12, 2009

Cancer

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

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!

Saturday, July 18, 2009

Airports and blown knees II, revenge of OAK

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.

Wednesday, July 8, 2009

Cursed?

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

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.


Tuesday, June 23, 2009

I lost a friend this weekend

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.

Friday, June 12, 2009

Always a Little Monkey?

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.

Sunday, June 7, 2009

BORP, Bikes and Bonding

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:

Friday, June 5, 2009

A New Wheelchair (sort of)

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

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.