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.


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.