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

Fireman's Gala (clothing episode)

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

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

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

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

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

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

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

Then we opened the coat:

Needlenoggin's full name was stitched inside.

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

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

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

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

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

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

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

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

"Little" Lies

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

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

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

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

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



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

"Fine."

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

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

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

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

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

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



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

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



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



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

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

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

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

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



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

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

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

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

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

Trust

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

Trust the people that saved your life

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

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

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

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


While Little Monkey made friends with the therapists in attendance:


Thank you everyone who is working on making Needlenoggin better!

"That's impossible"

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

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

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

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

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

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

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

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

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

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


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

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

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

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

Emergency Room 3/8/09

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

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

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

Crap.

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

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

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

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

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

“You don’t have to walk far!”

::sigh::

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

“Not even a few steps?”

And people wonder why those with medical conditions hate hospitals!

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

Medication, Mediation and Meditation

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

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

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

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