I feel like I'm on candid camera but on the phone.

I am trying to schedule an appointment with the local orthopedic folks at the Denver Children's Hospital.

We don't have a local ortho surgeon, because we go to Shriner's in Salt Lake.

I go to the website. There is a Limb Deformaties Team. Not one of my favorite words, but the page on the website says to call and ask for an appointment for the Tuesday Limb Clinic. I call the number.

The woman who answers has never heard of the Tuesday Limb Clinic. Eventually she says "Oh, ortho is what you need. Please hold."

Then I arrive on the extension of another woman. I repeat I want the Tuesday Limb Clinic.

"What's your referral?" She asks.

"Ah. . . my son has bilateral radial club hands. We go to Shriner's in Salt Lake for the surgeries, but I need someone to splint his hand before the surgery in January."

"No, but who is the orthopedic surgeon at Children's?"

"We don't have one. I just need a splint."

"Ok, well you can't come to the Limb Clinic. You have to get a full workup by the PA before a surgeon will see you to see if (garbled)"

"To see if what? I didn't hear what you said."

"To see if it's a true limb discrepancy."

"My son does not have thumbs and he is missing radius bones in both forearms."

"Is this with his arms or his legs?"

"His. Arms."

"Oh, well then you need the hand clinic."

"Ok. Do you have that number?"

"No. That's me too. Ummm. . . .we have an opening on November 7, at 1:30pm."

This phone call is exactly why I avoided contacting them. Honestly, people who say that socialized medicine is frustrating due to bureaucracy have never actually been truly ill with the current scheme.

On a positive note, we are may be participating in this study by the National Institute of Health, although I just called the number that the intake person said to call, and they hung up on me.

Hmmm . . . . . . .

Photos from the Littlest Heroes Project

Here are the photos from our session with Jamie, a photographer who donates her time and talent to the Littlest Heroes Project, a national network of professional photographers providing photos for families with children who are battling various illnesses.

Photos were taken at Chautauqua Park, Boulder, Colorado. All natural light - no flash.

They take my breath away. I never knew how important it was to have family photographs until yesterday, when I saw these for the first time.

"Photography is a way of feeling, of touching, of loving.

What you have on film is captured forever...

it remembers little things,

long after you have forgotten everything."

-Aaron Siskind

Photos photos photos

Last one first. Brody has such a good time in the mountain air of Dillon, Colorado, that he passed out on his Oma. My stepdad Jacques on the left is pretending I'm not taking his picture.


Jeremy, Brody and me after our brief sojourn in the canoe. I remembered why they called canoes tippy. We didn't, but I was surprised we didn't. Toddlers are not stabilizing factors in a canoe.

Purposes of this photo: Scenery. Also, my mom and sister. My almost 70 year old mom is the blonde on the right. Not bad, Oma!

Brody took this photo. I don't think he meant for it to be a bit crooked, but honestly, I kinda prefer it that way.
My 8 year old nephew took this photo.
This is just gratuitous from Brody's bath tonight. Anything can be a hat, even a disposable salad bowl. Also, I think he's giving me the finger.

Photos photos photos

From the birthday weekend.. I know it was almost 3 weeks ago. . . but here are photos from Brody's birthday.

First, an arty photo. . . sepia self-portrait (and yes, Brody is wearing my headband in his hair)


This is the "train" that at first we thought he would be too scared to go on all by himself. Then, after we paid for two rides in a row, we realized he was a very big boy.

Brody and Jeremy playing in the mud of the Boulder Creek.

This is Brody's fake smile, while wearing his party hat. Say Cheese!
I hope he is not in therapy later for this, but I just think he's so cute wearing my headband.

Dad's flip flops.

Obama, mama, balloons and Brody
BatBrody and me doing our best modeling pose
Jeremy and Brody.
And then, Brody put the batman mask on the dog. God bless this dog, because he let Brody do it. He got extra treats, and we got this photo.

Nestling in tiny threads.

Chains do not hold a marriage together.

It is threads, hundreds of tiny threads

which sew people together through the years.

~Simone Signoret

Ten years ago today, I met my future husband.

At Lodo's bar and grill.

Friday night, during Oktoberfest.

He and his 2 friends hit on me and my 2 friends.

His buddy introduced himself to me by saying, "Hi, My name is Matt. You know, like a doormat."

Um. . . . no. No, I'm not going to talk to you, DoorMatt.

Jeremy sidled over to me and said, "You're not getting away so easy."

We exchanged names and he asked, "So how old are you, anyway?"

I was 27, and Jeremy was 24. But after I said I was 27, he lied and said he was 25.

I was immediately smitten.

He called the following Tuesday, and we went on our first date on September 26, 1998.

Six weeks later, he asked me to move in with him.

Four months later, we did.

Two years later, he asked me to marry him.

Eighteen months after that, I did.

Jeremy is one of the few people on earth who can make me laugh so hard I cry.

Jeremy and I are the only ones who know what it is to love Brody like we do.

Jeremy and I are the only ones who know what it is to know the fear of seeing Brody carried into surgery.

This morning, Brody called for me but then he went back to sleep. Jeremy and I laid in bed another hour, awake but not wanting to get up and face the work day. I laid on his chest, he rubbed my back, and we watched the sky lighten.

Brody eventually truly woke up. I went into his room, and he asked me "Dahhhhdeee?" I said he's still sleeping (even though he wasn't anymore).

So we "snuck" into our bedroom, and we crept onto the bed, where Jeremy was pretending to still be asleep. Brody was so excited he kept having bursts of laughs, and then, grinning ear to ear, he "attacked" Jeremy, and Jeremy acted surprised and Brody laughed more.

The three of us laid in bed, watching the Today show, snuggled under the covers, while Brody had a bottle. It was bliss.

Sometimes a thumb is JUST a thumb

I bought the above product for Brody as consolation for him not having the thumb surgery. (Because if he had had the surgery, he'd be in a cast and unable to take baths much less use finger paints in the bath).

The other night we used it for the first time. As I was opening it, I noticed for the first time that the place where you poured the paint was the yellow plastic hand in the picture above. The perfectly formed five finger plastic hand.

My first reaction was a visceral recoiling - and the requisite anger, once again, that my son does not have radius bones, 8 fingers and 2 thumbs.

Then I had an epiphany of sorts: so what.

I had an English teacher in high school, Miss Smith, and whenever we wrote an essay, she made us include the "so what" of the subject book. As in, what is the higher purpose or symbolic point of this work of fiction? What does it really mean?

In the bathroom, I looked at the plastic hand, and I finally was able to say, So What.

I tried to figure out what it really means that Brody doesn't have thumbs right now. Or that he only has 4 fingers on each hand or that his arms are and will be shorter than most other peoples' arms or that his hands will probably continue to want to grow inwards at 90 degrees instead of out at 180 degrees.

Here is my answer: it doesn't mean anything. There is no greater purpose or nefarious point about it. There is no "so what" inherent in missing radius bones and thumbs.

It is just that. Missing bones and fingers.

And nothing more.

Which led me to back down from my imminent moment of despair when pouring paint into the yellow plastic hand.

So what if he's missing these things? So what? No one's life is absolutely perfect. These things do not define him. The important things, the things that really and truly matter, are already woven into Brody's life.

He will never ever doubt that he is loved. He is happy and healthy, thank God. He is safe. He has, at the age of 2, more wit and intelligence than some adults I have known. He has eyelashes that are almost an inch long and dimples that break my heart. He has already enriched this earth with his very existence and presence.

As a result, there is no way that I can acknowledge the greatness of Brody and simultaneously lament something as insignificant, in the grand scheme, as missing two bones and two digits.

And so I will not.

No thumb, no surgery

Just so we're clear, here's what happened over the last week. . .

Brody spiked a fever starting Wednesday evening - AFTER we flew to SLC, and after we checked into the hospital. It responded to Tylenol, and his chest was clear, but surgery was still cancelled. The anesthesiologist would not perform the surgery because of the risk of breathing problems after the extubation.

We had an incredibly rough night Wed night. They collected urine around midnight to do a UA - they thought it might be a urinary tract infection causing the fever. Which is, by the way, another worry - because if it was, that means (a) the health of his sole kidney is at risk and (b) obviously he didn't grow out of the reflux issue by age 2. Thankfully, the UA came back negative.
We did manage to convince the doc to at least take the rod out of his ulna, since it was almost poking through his skin and causing pain. After waiting 11 hours with no food and 5 with no liquids, the rod just poked thorugh on its own, and Brody started bleeding. The nurse put a bandage on it, and Brody got some Versed (relaxing medication) It took effect, and he was basically high as a kite. About 40 mins later, Hutch (the hand surgeon) came from the OR, took out what looked like a sterile pair of plyers, and while I held Brody's arm, and Jeremy held a bandage underneath for the blood, Hutch slid the pin out. Brody didn't mind too much, being high and all. Still, his nurse was amazed and kept saying that he must have a very high pain threshold.

Why can't we have surgery later this month? Although Shriners has several orthopedic surgeons on staff full time, our doctor, Hutch, is a hand surgeon specializing is micro-surgery. Shriners doesn't have him on staff. In fact, Hutch isn't paid by Shriners at all - he donates one day a month to surgery there. You may have noticed that all of the surgeries are scheduled for the end of the month - Hutch donates the 4th Thursday of every month. Which makes it all the more critical for Brody to be healthy when we do have surgery.

I happened to see Hutch's scheduler in the cafeteria Friday morning. She said that the 4th Thursday in September, Hutch is on vacation. The 4th Thursday in October, he is already overbooked. The 4th Thursday in November - Thanksgiving. And the 4th Thursday in December? Christmas.

To say we are devastated is an understatement. I've cried a lot, and Jeremy and I are just so angry - but at what? There's no one to blame so we feel completely powerless and useless. We undertook this course of aggressive surgeries so that Brody would have thumbs by age 2. Hutch told us it was critical for Brody's development to have thumbs by age 2. Well, he turned 2 September 1 and he has no thumbs. Originally, he was supposed to have thumbs in June. That was pushed back and pushed back because of an ear infection, a cold, etc. Of course, Brody has not been ill at all since April - what are the chances he gets a fever after he's already at the hospital for surgery after being healthy for 4 months???

We spent another crap night in the hospital, then Frontier wanted $226 PER TICKET to change our flight to a day earlier. Our travel person at the Shrine in Denver talked to them, and they ended up charging only $65 for me to fly back.

So basically, no thumbs for the foreseeable future. What was especially frustrating to Jeremy and me was it seemed like there was a complete lack of organization on the hospital's part. If I hadn't accidentally run into the scheduler, I would not have seen her or know this information. No one acknowledged what a blow this was to Brody's development. No one admitted that all the fixators on his right hand, all the pain and stretching done to that side, is basically worthless, because that right hand of his has returned completely to coming off his wrist at 90 degrees. And then, out of the blue, some hand therapist came into his room and fashioned a splint out of plastic and velcro - to stretch his hand. If an external fixator with 4 steel pins for 3 months can't stretch that hand, cheap plastic ain't gonna do it either. Sure enough - it slid off Brody's wrist within the hour. Worthless. Of course, that hand therapist said we'd have to go to a hand therapist in Denver to continue "distracting" the wrist by re-melting the plastic splint, and she said she'd give us her card so the Denver therapist could contact her. Which she never did. Which doesn't matter because we're not depriving our son of the use of his right hand for 5 months.

My biggest frustration is that I feel like the ball has been dropped. I know Shriners is a fantastic organization, and I know it's not their fault Brody got a fever, but the whole bedside manner and organizing our treatment plan was lacking this time. We still don't have a surgery date, not even tentative.

I don't know what our next step is, but I am looking into designing a splint for Brody that will allow him to use his hand, be comfortable and actually stretch tendons and muscles. Plastic doesn't cut it. Plaster and fiberglass don't work either. Between my husband and I we are going to figure it out.

Oh, and the fever? It went away. No other symptoms. Just gone.

Jeremy reminded me it could be much worse, as we saw several kids in the "halos" and wheelchairs at Shriners. Then I look at Brody, and he is as capable, determined, giggly, and ridiculous as ever. I know he will be fine in the long run, but I just so wanted this chapter to be concluded already and for him to have at least one thumb by his 2nd birthday.

Photos of our trip

Even eating cheerios in the morning, Brody is the handsomest little man in the world.


Having fun at the playground

Brody's aunt has a chocolate lab, named Fred. Brody did not understand that Fred was not his chocolate lab, Kahlua. Brody was glued to Fred the whole time, calling him Kakka, which is Brody speak for Kahlua. This is the only photo I could get of Brody and Fred, because Fred generally walked away as soon as Brody spotted him. As Brody's cousin Walker, age 3, said, Brody sure likes dogs.

Besides the dog, Brody loved helmets. I think it's because helmets signal something fun is about to happen. When Jeremy wears a helmet, it means Brody will get to see a motorcycle. In Brody's case, it means he's going on a bike ride!
Brody's first bike ride. Jeremy took him on the back of his bike, and afterBrody saw me on my bike, he said "Mama bike! Mama bike!" about 30 times.

In front of the house at Sunriver

Wow. . . a TV with controls that Brody can reach!

Brody refused to smile when I tried to take our self portrait.

I told Brody to hold onto Jeremy's ears, which delighted Brody. Jeremy not so much.

Oregon has much bigger trees than Colorado.

Random ramblings

Brody pronounces "moon" as "nooooommmmm."

We spent almost $10,000 on daycare in 2007. Ok, exact number was $8,721. This explains why we have no money anymore.

We just had a drill at work. The drill is - I get a phone call on my work number. It's the police saying that there is a dangerous situation, and that I need to stay away from the windows and turn off my office lights. This is my question - how would this help in a real "shooter outside" situation? This is another reason I am telling myself I am glad I will not be here for the DNC.

When I sing to Brody at night, one of the songs I sing is "Silent Night" - sometimes, for the second verse, I sing it in German (my mom was born in Karlsruhe).

Except I only know "Stille nacht, helige nacht" for the second verse, in German, and then I make the rest up with German sounding (to me) words. Brody doesn't seem to mind. I feel fluent.

One of the lullabies I usually sing to him as we're rocking to sleep is Favorite Things, from Sound of Music.

Lately, though, he has taken to saying "no" when I am singing a song he doesn't like. At first I thought it was my voice, and I actually got fairly hurt feelings.

So I kept trying other songs.

Either he gave up telling me not to sing, or he really only likes songs about him, which are the only songs he will not naysay:

Brody Song
B is cause you're beautiful,
R is cause you're really sweet.
O is for our only boy,
D is for your dimpled cheeks.
Y is for Yippee! Y is for Yahoo!
cause we're so lucky that we got you.

Brodyisms

Sometimes when Brody is playing outside, sometimes even when he is in the car, he will lift his arm up, look up at the heavens, and proudly say "sky."

And then I look, and sure enough, we're both looking at the sky for a few moments. I say "You're right, sweetie, that's the sky."

He smiles proudly at me. I give him a kiss.

******************************************

Tonight I had to explain to Brody the difference between a button and butt. It's more difficult than you would think.

******************************************

I realized tonight, reading Goodnight Moon and Dinosaur Roar! that I still read the words on the page. Not just say them, but actually read them. It strikes me as ridiculous. I mean, there really is no room for interpreting the story with these books. Goodnight nobody, goodnight mush. The pictures are the only thing on the page - at one point a picture of . . . nothing. The page is blank (Goodnight nobody). So I stopped reading and just looked at the pictures with Brody while I told him the story. It was much more enjoyable.

*****************************************

Nearing his second birthday, Brody is sometimes. . . well. . . willful. And sometimes when he doesn't get his way, he has tantrums. Shocking. And tonight, while he was on my lap during one of those tantrums, my person got in the way of his flailing hand, and he hit me.

Brody looked so shocked and horrified that I didn't have the heart to give him a time out. I did stifle laughter.

I said quite sternly, "You hit mommy, Brody. That's not nice." (He yells "not nice!" to the dogs when they lick him or knock him over. 'Not nice' is like a swear word to him - it's the worst condemnation he can utter at this point).

He was silent and looked away.

"Are you sorry?"

Silence.

"Brody, look at mommy." He does. "You hurt mommy. Hitting is not nice."

I swear he nodded, but that may have been my imagination. We returned to watching the dogs play. Then we cuddled.

I feel more guilty than he does, obviously.

My brother's birthday

Yesterday was my brother Gary's birthday.

He died in 1999. We think he was murdered, in New Orleans.

The coroner said he died basically of blunt force trauma to the head. He said it could have been from a fall but he'd never seen a fall that hard. So probably homicide, with robbery as the motive. Never solved. Or really investigated.

When we found out about Gary, he was already on life support. None of us ever got to say goodbye or that we loved him. But we all did, my mom, my sisters and brother, and I.

He was named after Gary Cooper. My dad apparently loved Gary Cooper.

I think about Gary a lot. Sometimes when Brody is in surgery, I imagine Gary and my dad, who died in 1989, in the operating room with Brody, watching over him. And sometimes I can feel them in the room with me, waiting with us.

Anyway, the point of this is not to dwell on Gary's death, but on his life.

Gary saved my life, quite literally. It was the 1970's, and my family had a pinto station wagon. The kind that eventually got recalled. We were all packed into the pinto on the way home from a festival. There was a lot of traffic, and it was bumper to bumper.

I was sleeping in the back of the station wagon, and Gary was in the middle seat.

We got rearended.

Hard enough so that the back hatch popped open, and my little 6 or 7 year old body started careening out the open hatch, into the other car.

Until Gary grabbed me by the collar of my shirt, and prevented me from flying out.

I remember that choking feeling, how strong both forces were, physics pushing me out the back, Gary making me stay in safety.

Gary had to have made that decision in less than a second. If he had hesitated at all . . .

I also remember Gary always wanted me to walk on his back. To crack it. I thought it was very weird, but what the hell - he loved it, so while he would watch those beloved westerns (probably starring his namesake) of his on TV, I'd walk on his back and feel the crunch under my feet.

When I was younger, and lighter, he would lift me upside down and throw me over his shoulder and hang me by my feet. I was terrified and giggling all at once.

Last night, in honor of Gary, I did the same to Brody. Hung him upside down by his legs, then flung him over my shoulder and pretended I was going to drop him. He loved it just as much as I did. I hope Gary was in the room with us.

I went on a date. . . .

Friday last week. Jeremy had lacrosse across town.

I picked up Brody from daycare, and decided on the spur of the moment to take him out to dinner.

And there was Red Robin. www.redrobin.com

Now, of course, we haven't always had good luck with restaurants (see Johnny Rockets post in June).

Friday was ridiculously fun.

We were seated at a booth that faced the whole restaurant. Brody in a booster.

Yes, he is a big boy.

Immediately, Brody is mesmerized by the cacophony of sound and distraction. He does also immediately notice that the table right next to us has a tower of onion rings, because he points to it and smiles saying "Whoaaa. . . ummies! Ummies!" Then he noticed other tables were eating too.

Next came the cherished sugar packet sorting. We ordered our food.

As an aside, kids' menus are way better than when I was growing up. Brody ordered the grilled cheese and fries, with a strawberry smoothie.

The onion ring table left after their meal was over. Which I only realized when Brody looked at their table, and asked "Where?" while using the sign for where, his little arm bent in confusion.

The smoothie arrived. Brody smiled. When I asked if I could have some, he said "No." And then looked at me while he moved the smoothie to the far side of him.

Then Brody began to realize he was hungry. I got a little nervous. I had no food with me. He kept pointing to other tables' food piles, saying "ummies" and signing "more" and "please," and telling me to "stay" (that's what I tell him when I get up from the couch to get him some milk, so now he tells it to me when he wants food) (and yes, I do the hand gesture and it is a dog command, but it works).

At the moment right before the meltdown, our lovely waiter arrived bearing all of our food. Brody actually held his arms up and yelled "Yay! Yay!"

Apparently, the kids' grilled cheese is on Texas toast. This did not deter Brody. He ate the whole sandwich, and if the piece he had bitten off was too big, which it often was, he used his free arm (not hand, the forearm part) to shove it back into his mouth.

By the time dinner was over, Brody had gotten accustomed to having a waiter. Every time he appeared, Brody said "More? more?" knowing that the waiter was going to be giving us something else - be it more smoothie, food or crayons.

It was a fantastic date, and we will be back. Screw Johnny Rockets.

Vive la Red Robin!

Brodyisms

Last night our neighbors had a party, to which all 3 of us were invited. As a result, Brody stayed up until 9pm, for the first time ever.

We left when he put his head down on my shoulder and said "Nigh, nigh" which means, of course, good night.

As we were walking back to our house in the dark, Brody had this befuddled look on his face. Then he pointed up and looked at me, and said "Sky off."

He hasn't been outside in the dark for months, and not since he has been talking a lot.

Jeremy said, "Yeah, buddy, the sky is off. Time to go night night."

Brody looked at me, and asked, while pointing still to the sky, "On? On?"

I am a very powerful person, but even I couldn't turn the sky on. I said, "No, sweetie, it's night night, so sky off. Sun is night night."

Then he looked up at the sky and said, "bye bye"

Brody's future

Obama.

I am an Obama devotee. So this post will probably only appeal to fellow Obama devotees.

Obama just spoke to a crowd of 200,000 in Berlin.
www.politico.com/news/stories/0708/12028.html

200,000.


Can you imagine any candidate for any office from another country drawing 200,000 Americans to one of his or her speeches?


Reporters say his 27-minute speech at the gold-topped Victory Column was interrupted by applause at least 30 times, with occasional audience chants of “O-ba-MA!”


Billed as a speech about Transatlantic relations, it turned out to be a manifesto for the planet, with an appeal to “the burdens of global citizenship.” German authorities said the crowd was more than 200,000 — triple Obama's previous record of 70,000 in Portland, Ore.


Can you even imagine Obama as the American president? The possibilities are almost overwhelming.

I was thinking how crazygoodfun it will be to discuss politics with Brody. Then I wondered whether Brody could one day vote for Obama.

I did the math - he's 2, he can vote in 16 years, but at that point Obama will be term limited from running for president again. Alas. . . .

Then I had the most inspired thought.

What if in the future, Obama voted for Brody?

Photos

Photos from the weekend. . . I took this one because I was trying to take one of him smiling into the camera. Instead, it was way too sunny, so now it's a photo of Brody with his beloved cheese (if he ever becomes lactose intolerant, I think he would go insane). Also, scar photo. Also, see how his right hand is not so straight? I mean, it's straighter, but not as good as the left. You can kinda see the bump on his forearm too - that's where the rod is sticking out a bit. So it's the right hand/arm the doc will work on in August because he wants to re-straighten it, and then he'll do the thumb on that arm at the same time.

So this is called Smile Into the Sun. Cause he is still squinting. But my god, how cute is he?!?!

Daddy and Brody fishing in the pond behind our house. Brody is afraid of grass, so it was a big deal for him to walk up to daddy on the grass. I see many future fishing trips.

Brody loves to play with my hair clips. And before anyone accuses me of abuse, he asked me to put this in his hair. The fact that I had a camera ready right there for a photo is a pure coincidence.

Finally, no, Brody did not start boxing lessons. This is what happens to my little man when the Claritin wears off. He was pathetic. But still, on the way home from daycare, even with his eyes almost swollen shut, he managed to point out a bus, a bike and a boat.

Brody steering his car. Please note how he already uses his index fingers as thumbs. I am so proud of him. He literally evolved right before our eyes.