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.

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.

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:

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.

"Happy" Jetting, Indeed

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

"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

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

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

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

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

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.

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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