The week so far & centralization news from Shriners

On Monday, it was too far til pay day. And then I left my car keys at the office. Which I did not realize until I was 10 miles away at the park n' ride, right after the bus dropped me off.

On Tuesday, I locked myself out of the house in the morning (my house keys were at work too) and then I sat through a painful meeting at work during which one part of something I am working on fell apart.

On Wednesday, I talked to a woman who was either high on prescription pain meds, or crazy, for 90 minutes. Apparently I caught whatever brain fog she had, because I was seemingly non-functioning the rest of the day.

On Thursday, (today), I drove him the half block to pre-school and realized when I got there that I had not buckled him into the car seat. He now climbs into the car, and car seat, by himself. I forgot to finish the job. Felony, much? Don't tell anyone.

Just now, I set up a meeting with the occupational therapist and the team of other therapists who see Brody (the OT is the only one who works with Brody) through the local school system. She was a little too nice on the phone for my liking, describing the meeting next Thursday as a "casual conversation to talk about where Brody is, and where we'd like to see him, and all of the things the little guy has been through."

Yes, I am suspicious of nice people. It was too carefully crafted. Something is wrong.

I looked up fine motor skills, and he actually has most of them on track, amazingly enough. Things we do not have are ability to write letters, and going potty by himself (unless he is naked, which he is most weekends). He can shimmy out of his pants, and lift the shirt over his head, if we take his arms out of the sleeves.

Late breaking news: Just got a call from Hutch, Brody's micro-hand surgeon from Shriners, regarding Brody's right wrist that has not remained straight. "Wrists suck at staying straight unless there's a pin in it." That is a quote from this man, upon whom I may have a crush. 

More quotes "Tendon wise there's not much left to move, so I could do it again, maybe chew up more bone, but I don't want to do too much because that will stunt the growth."

What this translates to is that Hutch has moved all the tendons once, and that did not work. When he did the pollicization of the right wrist, we thought he re-did the straightening part. Today he said he really did not do anything to straighten that side a second time, except for inserting another pin into the ulna.

The risk of doing too much is that if he puts the wrist directly on top of the ulna's growth plate, we stunt the growth of the ulna, which is already at about 50% length of average arms.  (At skeletal maturity, Hutch will fuse the wrist onto the ulna bone, so that in adulthood, Brody won't have this issue).

I tried to get a sense of what he thought we should do. He said "I'm up for it." But he said mainly after the centralization (straightening) surgery, most people do not do it again because it works better than it has on Brody.

So.

Clear as mud.

Back to the rest of my previously written post.

Tomorrow, tomorrow is pay day. No furloughs this month or February. March is up for grabs. Layoffs are coming, hopefully not to me or my people. Government always feels economic strife the worst a year or two after the private sector.

Saturday, I am hopefully going to my friend's house to have her photograph some jewelry. Monday I am hoping to officially open my online store. Saturday evening I have book club at PF Changs. I did not read the book, The Heretic's Daughter, so please someone tell me about it.

Monday me-pression.

Having a bad week. Hoping for an upswing. Where's the upswing? Maybe it's a downturn. Anyway, I'm stressed about work and funds. Furlough days are hitting us, in the few day homestretch before the next pay day. If something would kick up, that would be great. Work is pretty good, but busy and as a lawyer, I have to deal with something called "opposing counsel" and those folks can tend toward annoying my heart with their antics.

At any rate, I found this new blog recently, and I really like the writing. I hope you do too.

Rodeo Remembrances

I've posted on facebook and twitter and carepages about the rodeo.

Now for what I remember.

I remember picking Brody up at daycare and dressing him in his vest and hat.

I remember Jeremy at first saying that he couldn't be with us before 6pm, and then leaving work early, and beating us to the National Western Stock Show.

I remember driving into the parking lot, and the "Gold Buckle" lot, which meant first row of the VIP parking. When did we ever have that before?

We crossed the street, and there was Jeremy. We walked around, and saw the draft horses. The photographer from CBS4 called me and we arranged to meet in the Petting Zoo area.

I remember walking for what seemed like hours to find the Pettin Zoo area in the Hall of Education and glimpsing a carousel, the Nuggets head coach, and many many cowboys. I had no notion that the Stock Show was this large. The three of us were a bit lost and kept walking walking walking.

Then we got to the Petting Zoo and I called the photographer to say we were there only to discover he really meant for us to meet him at the Adventureland for children, but I had no idea where that was so I made him come to us.

He was very nice, and we shot a short segment. Thank the gods I was not on film (except for my legs).

We walked the miles and miles (symbolic miles, of course) back to the coliseum where the rodeo was, and along the way Brody ate a footlong hot dog and a big pretzel.

We connected with the Shriners and we met the Potentate and his aide and the medical staff and their wives, the men all wearing decorated and sparkly fez hats. We chatted about Brody and what the surgeons did for him and us. Most of them are board members at the Salt Lake hospital where we go, and we told them how it's like visiting family now when we see the nurses and cafeteria staff and anesthesiologists and surgeons.

Then Jack, one of the Shriners, took us behind the scenes at the rodeo. Down the rows of the seats, down the sloping walkway to the underground, we were behind the ropes, and we walked onto the dirt underground arenas where the horses and men practiced, and the beauty queens pranced on their horses.

And then there were stalls, and more cowboys and more Shriners. Every one of them was so welcoming, not just to Brody but to Jeremy and me. Kind, and excited with and for us. Jeremy and I do not often feel impressed, but we were then. One cowboy took us out farther from the stalls to get our credentials. We left Brody with the Shriners. I don't know which was more shocking: that we left him with strangers, or that he let us.

There was a trailer in the very back, where the contestants went to sign up for each event. More cowboys signing up for roping and bull riding. And us, signing release forms. We got our credentials and because Brody is so little, he got a number to wear on his back, just like the real cowboys.

We trudged back through the stalls to the row where Brody and the Shriners cowboys were, and he had already ridden Trigger! I couldn't believe they did it without us, so they did it again. And Trigger looked exactly when I needed him to for the best picture. Love that horse.

Then the cowboys took Brody from stall to stall, explaining who each horse was and what he or she liked.

Then we went back to our seats, and the rodeo began.

Brody did not exactly care for the pyrotechnic booms and fireworks that started the show; I could tell because of his clinging and terrified crying.

It stopped, the lights came on, I told him the bombs were over. He turned and was mesmerized.

Then it was our turn to be led back down, past the rows of people wondering who we were that we got to go down and under and down past security . . .

We entered the holding area for the rodeo and you know when you read "the air was thick with excitement." Well, I understand that now. The horses and humans were each and all animated, moving constantly around us, cantering, trotting, turning, talking as we walked toward two beautiful, enormous, gleaming black horses in the middle of all of this movement, leading a white carriage. The horses snorted and stomped their hooves and the carriage moved a foot forward and back a few times as we were all climbing in, and instead of being nervous or frightened, we were thrilled, Brody on my lap and Jeremy's arm around us...

I had the odd thought that there were no car seats in carriages....

Then we lurched forward and it was fast. I think the horses were only trotting, but it was faster than I thought. And smoother. Rhythmic.

The sea of cowboys parted for us and we moved through the low tunnel and the horses seemed as happy as we were, anxious to see the crowds and hear the applause, and suddenly we were in the wide open brightness of the arena, surrounded by stands of people, and I could hear the announcer reading my words, except he added "Now this is Brody, and listen to this, listen folks. . . " and then something about being born without thumbs, and Shriners moving his index fingers into thumb position, and then his words drowned out as we moved down the line of faces smiling and waving at us.

I could hear applause and see them waving at us, more than I thought they would, and as the announcer read through my words, people clapped even more, and I think I saw a few of them them looking at their own hands and trying to get a better look at Brody's, Brody who was just as in awe as we were, Brody who was so brave he waved and smiled at everyone from my lap and me, glad for Jeremy's arm around me to hold me up, me smiling ear to ear while my eyes welled up with tears because this, this moment took my breath away because I realized all over again how fortunate, blessed, loved and unique Brody is, and we are, and how if he had been born with 10 fingers and radius bones, we would not be reveling in this surreal, bizarre experience.

I remember when we passed in front of the Shriners section, and they all stood up and roared to us, and I blew them a kiss and stopped trying to stop my tears and then we lapped back into the tunnel and I couldn't stop smiling, and I didn't try, and I had this undeniable urge to kiss Jeremy senseless and squeeze Brody breathless, and so I did, and then I kissed a few Shriners too.

Intentional act of kindness

One of the things I am trying to incorporate into my life are kindnesses. I'm not actually that nice of a person. The conversation in my head is usually most unkind to most people, and for no good reason other than my own gloominess.





To that end, I recently sent out an email to my co-workers, lawyers, paralegals and assistants, all of whom work for a government agency. (this is for the next time you want to make a joke of lawyers or bash the government) (although I don't like most lawyers either).



It read:





Over the holidays, a friend of my family returned from her volunteer work in Tanzania. She is helping to teach at a fledgling Tanzanian university, and her and other volunteers have "adopted" a local school. So the needs are two-fold:

For the school kids, they have no books, and no toys. They have never seen anything beyond the town in which they live. Amazingly, they have never seen an elephant, lion or other animals which we all associate with Africa. Their sphere of reference is very narrow. The prized possession is a "soccer ball" which is really two socks sewn together with newspaper stuffed inside.

For the university, the "textbooks" they have are encyclopedias from the 1970s.

My friend leaves on the 14th to return to Tanzania, and I am attempting to gather as much as possible before she goes. Please let me know if you can contribute any of the following items, and gently used is great too:

~Soccer balls (or sport balls of any kind -baseball, basketball, tennis, etc)
~DVDs of any kind, especially children's movies
~Recent (21st century) textbooks on any subject matter
~Crayons, coloring books, markers, pens, paper, workbooks
~Children's books, or picture books of places in the world of any kind
~Novels or non-fiction paperbacks
~Jump ropes
~Anything you think would help

I was expecting 1 or 2 used books, maybe a soccer ball. Our office just had two furlough days, which means that we all had a 10% pay cut in our last paycheck.

Instead, the outpouring was overwhelming.

We have textbooks, novels, picture books, children's books, jump ropes, dvds, badminton racquets, backgammon, board games, pens, markers, crayons, notebooks, tennis racquets, tennis balls, footballs, and several soccer balls.

Such a simple thing, and it was so easy. Yet the response is enormous. I knew I worked with kind and generous people, but this is astounding.

When we told the family friend about the loot coming her way, especially all the soccer balls, she became a bit teary-eyed I think.

This is a much better feeling to have than the amused-at-my-own-snarky-wit feeling I usually have.

Summarizing

How do you summarize how much it has meant to your family to have a world-reknown micro-hand surgeon straighten your child's hands and move his fingers around his hand so he has thumbs?

For free?

Nevertheless, this was the task that Shriners asked of me. Write the blurb for the announcer to read at the rodeo this Friday. I did:





Brody is 3 ½ years old. He was born with a rare condition called radial hypoplasia, which means he does not have radius bones in his forearms and he was born without thumbs. Brody’s arms are a little shorter than most, and his hands tend to grow at 90 degree angles instead of straight. Without thumbs, Brody’s hand function was decreased by 50%.

In January 2008, Brody began a series of surgeries at Shriners. Shriners surgeons straightened Brody’s wrists and his hands, which increased his ability to reach for toys and utensils. Then, in 2009, Shriners moved Brody’s index fingers into thumb position on each hand, increasing his hand function by 50%!

Thanks to Shriners, Brody can play lacrosse, tennis, and baseball, and he can even shoot webs like his favorite superhero, Spiderman.




Tonight, we are going to Richard's house. Richard, President of the El Jebel Shriners Medical Staff, and with whom I have spoken telephonically many, many times since January 2008, who paid for and made all the arrangements with Frontier Airlines to fly us to Salt Lake and back and forth and back approximately 12 times. Richard who cannot be at the Stock Show because he is flying to Juarez, Mexico to do the quarterly Shriners clinic there.





I spoke with Richard last week and thanked him profusely for choosing Brody to be the Shrine child at the Stock Show rodeo. I explained that with the unpaid furlough days we've had recently, this is really the only way Brody would get to see a rodeo, at least this year.





He then immediately asked if we wanted to be the Shrine's guests at the Shrine Circus that comes to town in April. I told him I work with 500 people and I'd like to sell some tickets, too.





It's an odd position I'm in, someone like me, who was raised to be independent and self-sufficient, to be given so much with barely a please out of my mouth. It feels. . . humbling, confusing, exhilarating, and embarrassing.

But I'll take it.





Richard also sent a photograph of a prior year's Shrine child in the carriage at the rodeo:

I can't wait to see the look on his face.

Unless he has another tantrum.

Squittens and Squoys? Twisty cats and boys?

I'm writing a blurb for the rodeo crowd, to be read during our carriage ride in the arena by the announcer. I just googled radial hypoplasia, the fancy name for Brody's arms. A bunch of cat websites came up.

Do you know what radial hypoplasia in cats is called?

Guess.

You'll never get it right.

Twisty cat.

Also, Squitten. Because the cat resembles a squirrel with its unusually short limbs. That's how Wikipedia explained it, at least.

Sometimes the cats are bred for the twisty squitteness.

I don't know whether to laugh or cry.

Would Brody be a Twisty boy? Or a Squoy? I've called him monkey and Mr. Potato Head and Brodary, but never, ever did I think he looked like a squirrel. What the fuck?

Here are the photographs we sent to Shriners, by the way. I'm trying to do a clinic appointment over email because I do not feel up to flying to Salt Lake and back in one day to be told that he needs more surgery several months down the line. We know he does. The question is when and for what, re-straightening of the right hand, tendon transfer, what?

This is when we first got him home, about two months. I had forgotten how amazing his right hand was. Try and bend your hand into that position. It hurts. It doesn't hurt Brody.

First professional pics, and his beloved dog. The scar on his right hand that you see is from the [non-Shriners] doctor, DOCTOR, cutting his cast off straight through his skin. Just one reason we do not see her anymore. 8 months old I think:

Splinted from 4 months on:

Christmas photographs at 14 months. Splinting had helped, but when we stopped, the arm crept back into its unstretched position.

Ahhh. . . . post-thumb, restraightened, with a metal rod drilled through his ulna bone to keep it straight. His arm looks ridiculously long to me here:

A couple of months later, the pin about to break through his skin, as it had "backed out" of his ulna:

And now. No pin, no splints that he will keep on. The good news is the regression seems to have stopped at this point.

Me? I don't think it's that urgent. Ultimately, when he reaches skeletal maturity (age 17 or so), Shriners will fuse the wrist into place to keep it straight. We can't do this now because it stops growth, and we want all the growth we can get.

The right hand really is so much better than it used to be. And he is using it more than he ever has. Not his thumbs, mind you, but his hands. I'm sick of surgeries, and I'm sick of putting Brody through so much.

Jeremy wants it surgically straightened again. As soon as possible. He is worried about school, and teasing and Brody being ostracized.

I am too. You know I am. But I am fatigued.

How do you resolve that one in a marriage?

40 things to know before I turn 40

Forty wisdoms about life.

I think I knew all of them.

Practicing that knowledge is another subject. This is a reprint of a British article found here.

40 things you MUST know before you're 40
By Laura Kemp 4/01/2010

After Catherine Zeta-Jones [nb: she's 50 if she's a day], Renee Zellweger, Gwen Stefani, Jennifer Aniston and Cate Blanchett hit their landmark birthdays last year, here are the things you should realise before you hit the big 40...

(1) Lots of anti-wrinkle creams don't work.

A study by consumer mag Which? this year revealed what we've feared all along - none of the 12 tested products came close to eliminating or significantly reducing the appearance of wrinkles. [But for goodness sake, I can't stop using my cheap creams!]

(2) The way to lose weight is to eat less and exercise more.

There may well be an on-trend diet to follow - be it eating cabbage soup, copious amounts of grapefruit or lean protein - but more fruit and veg, less fat and restricted treats combined with 30 minutes of exercise every day is the only way to do it. Sorry!

(3) If he doesn't call he hasn't lost his phone, he really isn't interested.

Just ask yourself what you'd tell a friend if they were mooning over an unsuitable man - then tell yourself.

(4) If you have to ask yourself if it's OK to wear a mini skirt then it isn't.

A Debenhams study revealed that the majority of women thought the cut-off point for flashing your thighs was 40.

(5) When you've been dumped, "dignity" is much better than getting drunk.

In your younger days, you'd have been inclined to hit the town - hard. But sober reflection and accepting the relationship wasn't in your best interests is the way to go.

(6) Take those compliments gracefully - and gratefully.

You never know if it's going to be your last so don't bat it off with an "oh, I look a state, I found it at the back of my wardrobe." Have some self-respect!


(7) A salad will not fill you up at lunchtime - you'll end up having a Double Decker an hour later.

Research shows wholegrains will stop your tummy rumbling thanks to their fibrous content and lowglycaemic index so go for a bowl of pasta instead (minus the cheese!).

(8) The housework can wait.

Playing with the children, sharing a candle-lit meal with your man or catching up with your friends is far more fulfilling than playing the desperate housewife. Besides, the sooner you do it, the sooner you'll need to do it again!

(9) A good bra works wonders.

According to bra shop Bravissimo nearly 80% of women and girls are wearing the wrong size. A fitted one will improve your posture and silhouette. [Also, investing in good foundational garments that cost more than $15 at Walmart will pay for itself in the lifted - ahem - self esteem]

(10) You are turning into your mother, whether you like it or not.

A study by the American Society Of Plastic Surgeons found that mothers and daughters age in a strikingly similar pattern. So you can blame her for your sagging eyelids as well as your tendency to call everyone the wrong name.

(11) It's not too late.

Don't panic if you haven't done it by now, there's still time left for you to learn to play the flute/turn Buddhist/ become a pop star. The onset of "middle youth" as opposed to middle age means you can still achieve over 40.

(12) Just because you haven't had kids don't assume that yet, don't assume that it's too late.

Just look at actress Jane Seymour, who had twins at 45, or Susan Sarandon, who became a mum at 46. [Also, adoption is a beautiful way to become a parent]

(13) A wolf whistle is no longer something to complain about.

In fact, ring up your friends to brag about it! [This is one I do not agree with; it's abusive and sexist]

(14) And... relax.

A traffic jam isn't worth getting upset about. Instead, think of it as a golden opportunity for a very rare bit of peace and quiet.

(15) Learn to love luxury.

Backpacking was great fun in your 20s when you could deal without a hairdryer and sleep in a noisy dormitory. But a five-star hotel with room service and wi-fi wins hands down these days.

(16) Tidy your wardrobe and save yourself a few quid.

According to research by Weight-Watchers, every woman has £260 of clothes that's banished to the closet graveyard. Have a clear-out and sell it on the internet.

(17) Sex can still be great.

A recent survey by Saga found 65% of over-50s are sexually active, with 46% claiming to have sex once a week.

(18) You can finally crack smart-casual.

It means evening dos, business lunches and christenings no longer fill you with dread in case you're over or underdressed. Stylists recommend smart trousers, lots of layers starting with a silk camisole and a chic wrap topped off with a statement jacket.

(19) It's fine to daydream over an ex but Facebooking him will cause too much trouble.

You'll either end up disappointed that the school hunk ended up fat and bald or he'll start stalking you.

(20) Phone, don't text.

Texting is brilliant when you're juggling kids, work and cleaning the cat litter tray but it is no substitute for a phone call to your best friend.

(21) Your handbag should contain a travel tube of hand cream.

Because our hands are exposed to the elements, they're one of the first parts of our bodies to show our true age, according to Neutrogena. So the next time you're waiting for the bus, apply a splodge of the soft stuff.

(22) There's no such thing as "no ties" sex.

In her 2008 study, Professor Anne Campbell from Durham University revealed that negative feelings reported by women after onenight stands suggested we are not really well adapted to fleeting sexual encounters because we are programmed to search for mates to reproduce with.

(23) A Saturday night in alone in front of the telly is not a tragedy - it's bliss.

Life is so busy it's a rare thing to enjoy your own company with a spot of me-time.

(24) Having a baby will not mend a failing relationship.

It'll put it under even more pressure. Research by Aviva Insurance this year found that the reality of parenthood leaves many new mothers and fathers feeling stressed, isolated and confused.

And, surprise, surprise, many couples reported that they had more arguments and less sex in the first year of their baby's life. [I confirm this, and I bet the stat is even higher for people who have children with medical issues].

(25) If you can't be bothered to go out, just say so.

There's no point making up an elaborate excuse. If your friends are real friends, they'll understand.

(26) Packing an overnight bag is a breeze.

It no longer needs to be the "Oh my God, what on earth am I going to wear?" dilemma it once was. Wear smart jeans, a pair of flats and a daytime coat and then pack heels plus a trendy top for the evening. Simple!

(27) Laughter lines are a lost cause - besides, all your friends have got them now.

But do take up facial yoga to prevent a turkey neck. Try the "clenched smile" by gritting your teeth, opening your lips as wide as they'll go and hold for a few seconds.

(28) Face it. You'll never grow out of your crush on David Beckham.

You fell in love with him "way back when" [no I didn't but substitute George Clooney] he was smooth-skinned and floppy-haired, you stayed true throughout his Mohican stage and even with those crinkles around his eyes, you just can't give him the elbow.

(29) Unlike fine wines which improve with age, hangovers don't.

Scientist Professor Elena Varlinskaya has proved what you've long suspected - teenagers have a greater resistance to alcohol and not only are they less clumsy and sleepy on the night itself, they do not suffer as much the next day.

(30) Policemen aren't getting younger.

You're just getting older.

(31) When it comes to style icons, you're too young for Helen Mirren and too old for Lily Allen.

Instead, settle on chic Michelle Obama by day and elegant Kristin Scott Thomas by night, who go by the golden rule of "legs or cleavage - never both".

(32) A night out with your girlfriends is much more fun than a night in with your husband.

But it's very comforting to stay in with him the following evening.

(33) Learn what true love is.

Not chocolates and flowers but a man who will drive round looking for the nearest 24-hour Tesco at 3am when you've run out of Calpol and the kids have got a temperature. [I don't know what this means, but generally the gist is the man got medicine at 3am]

(34) What's the point in...

buying a book when you can borrow it free from the library?

(35) Blokes with salt and pepper hair begin to look very attractive indeed.

Just look at George Clooney, Brad Pitt and Ray Liotta.

(36) Wear at least SPF factor 25 whether you are on holiday or not.

Sunburn and strap marks are not a good look.

(37) Dating a man with kids doesn't put you off.

It makes him endearing and sensitive - and more likely to understand when your offspring reduce you to tears and frustration.

(38) Those hot flushes probably aren't down to the radiators.

But don't fear the menopause - you'll be free from periods, you won't have to worry about falling pregnant and you can live your life without being ruled by hormones.

(39) You find you finally understand the secret to financial success.

Spend less than you earn, sign up to competitive utility deals, pay off your credit card bills, start a pension and tuck a bit away for a rainy day.

(40) Don't bother being "forever 39".

A huge party for your 40th is one of those fabulous memorable moments in life, like your wedding, when you get lots of presents.

Brodyisms (again)

B: You can play wis me if you want to.
(How could I not want to?)

~•~•~•~•~•~•~•~•~•~

B: (finishing drinking some water) Ahhhh... Dat was cold water.

Me: Yeah, water is good for you.

B: It helps me grow big and strong. I'm getting bigger from da water.

Me: Yes you are.

B: I'm like a flower. I'm growing like a flower grows wis da water.

~•~•~•~•~•~•~•~•~•~

B: you sleep wis me, mommy?

Me: no, sweetie. I can only cuddle for a few minutes. Big boys can't sleep with their mommies.

B: (crying now) I wanna be little, mommy

~insert knife into my heart~



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Brodyism

Brody: Shit is a bad word mommy. I don't say shit. Shit is a bad word.

Me: Then don't say it.

Brody: Nooooo, I don't say shit because shit is a bad word.


- Posted using BlogPress from my iPhone

Location:Lakewood, Colorado