Friday, September 26, 2008

I figured it out!!! I figured it out!!!!!

We have a fantastic pediatrician's office. Children's Medical Center in Denver. Our first ped, Dr. Mary, just left the practice and so we chose another one of the peds.

This is our new ped: Dr. Jay (are all pediatricians referred to by their first name? It's so weird to me. I don't even know the first name of most of my doctors. Well, one I knew: Dr. Tracy Hofeditz. Jeremy saw Dr. Hofeditz a few times for various maladies, then when I had an ear infection, I saw Dr. Hofeditz. You should have seen my face when Tracy turned out to be a man. Cruel, cruel parents.)

At any rate, Brody's new ped is Dr. Jay:

Recognize him? Because that is a photo of Harold Ramis.

I saw Dr. Jay Tuesday, and it finally dawned on me that he looked familiar. And today I figured it out.

And I don't mean that Dr. Jay resembles Harold Ramis, or looks like he could be a relative of Harold Ramis.

I mean that, as I sit here right now, remembering Dr. Jay's voice and mannerisms, I kind of think that Harold Ramis is actually a pediatrician in Denver masquerading as Dr. Jay Markson.

And I have to write about it here, because it is so obvious now, that I can't say anything to Dr. Jay because I am sure he gets the comment at least daily. I would bet money he has been asked for his autograph by people thinking he is the guy from Ghostbusters. And now I really want to tell him -- which is a weird impulse anyway -- but I want to tell him "Hey, you look like Harold Ramis" as if Dr. Jay could not possibly know that and I would be telling him something new.

Thursday, September 25, 2008

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.

Wednesday, September 24, 2008

Gifts for that hard-to-buy-for person.....

I gave this book, 12 ways you made a difference, for my mom's 70th birthday.

Made her cry, and laugh.

One of the pages makes you list 5 lessons that the person to whom you are giving the book taught you. I won't detail the sentimental ones, but I feel the following lessons I learned from my mom warrant publicity:

3. When addressing Christmas gifts, Santa's handwriting should always be different from mommy's handwriting.

5. Hamburger buns are worth the extra money.

Also, I found this and really liked it. You can pick any of the 300 messages to go into the jar (they are all sweet, positive messages, nothing like "I cheated on you with your best friend") (although that would be a funny gift to certain people) and decorate the jar any way you like. A treat for the giver as well as the getter.

Monday, September 22, 2008

I am lazy so. . . .

I'm ripping off this post from the carepages update. So there.

Brody is doing very well. We never did find out what the random fever was about - it literally disappeared with no other symptoms ever appearing. It was yet another lesson in learning to concentrate on what we can and cannot control.

Brody is enjoying the fall. We just had a wonderful weekend in Dillon, CO with my mom and stepdad. Brody got to go in a canoe and go swimming. He loves to "dive" into our arms from the side of the pool. We are still working on going underwater. He thinks it's hysterical to splash everyone else, but gets quite upset when someone splashes him and gets water in his face.

Brody is also now in the 2 year old room at daycare. This means that instead of playing with the 1 year olds and infants during the early morning and afternoons, he plays with the "big" kids in the 3s and 4s rooms. Last week I went to pick him up and he was playing with a couple of 4 year old girls and another boy. They asked me what was wrong with his arms and pointed to his scars. I told them he had surgery to make his hand straight and that he would soon have surgery to make his fingers into thumbs and wasn't that cool? It seemed like they didn't realize he didn't have thumbs, so I explained he wasn't born with thumbs. And of course, being children, they asked why. I said no one knew, they just didn't grow. One girl said, "Yeah, we saw he didn't have thumbs when we were playing outside. But Susie (the other little girl) thought he didn't have thumbs because he was poor." After stifling my laugh, I said "No, he's not poor. He just doesn't have thumbs." The minds of children.

Anyway, on to the next steps for our little man.

Esophagus:We noticed over the summer that Brody was having trouble eating certain things (mostly soft things, like noodles, or slippery things, like fruit). Our gastroenterologist said the dilation surgery he had in March might last 4-8 weeks. Well, we got a few more months out of the surgery than that. But we now believe - since he is having all of the same symptoms (severe hiccuping followed by vomiting) - that the stricture is narrowing again. Luckily, Brody's doc did not make us come in for an appointment to confirm this. A few phone calls, and we actually have a surgery date of next week, Thursday October 2 at Children's in Denver. The dilation is an outpatient procedure so he won't have to stay overnight in the hospital which is beyond lovely. The dilation is an hour long procedure, with 2 hours in recovery. Please send any prayers or good thoughts you have that Brody stays healthy and that the surgery goes well. Some kids with tracheoesophageal fistula have to have weekly or monthly dilation surgeries, so one or two a year is not so bad.

Hands:Today we just received confirmation today that the surgery on Brody's right wrist and thumb will be in January. Then the plan will be to do the left thumb in March. The only way we could get in October would be to demand that they cancel other patients' surgeries and do ours first. We didn't want to take the karmic risk of that, plus the guilt would probably kill us. Jeremy will have a brand new year of leave time, and I will hopefully have some time built up and it will be nice to have a break from traveling for surgery. We can just concentrate on a nice holiday season without surgery.

And the more I think about it, the more I understand that it will not truly matter in the long run. I watched Brody coloring with some 3 and 4 year olds the other day. His drawings look just like the 3 and 4 year olds (ok, yes, Brody's drawings were better but I'm trying to sound unbiased). He holds pens and crayons just fine and he loves to eat with forks and spoons (he recently tried to eat a grilled cheese with a spoon). Adding thumbs will only make his life that much easier.
Finally, because of this fine organization, the Littlest Heroes Project, Brody, Jeremy and I are having a photo session this weekend with this wonderful photographer, Jamie Marie.

So if you know any kids who are dealing with some medical issues, illness, etc, urge them to the Littlest Heroes Project website. Amazing stuff.

Thursday, September 18, 2008

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.

Sisters and quandaries

A sister is a little bit of childhood that can never be lost.
~Marion C. Garretty
My sister Marilyn and I went to dinner last night to work on a present for our mom's 70th birthday.
We spent 3 1/2 hours at the restaurant. We came close to closing it down.
I don't think I have laughed that hard in months.
We reminisced. We gossiped. We filled in each other's memories. She got teary eyed reminding me of a birthday card I sent her when she was in college (and I was apparently 11 or 12). She even remembered what it said. I have absolutely no memory of it.
It's that kind of night that makes me think maybe Brody should not be our only child.
He would never miss having a sibling, I suppose. But Jeremy and I would know he was missing that. It's one of those decisions I wish would become clear.
And, you know, easy to execute.
But I digress.
Last night was amazing. Also, this is a really wonderful restaurant. They let us loiter while we created a gift for mom. (Which will be revealed after this weekend, because said mother has indicated she reads this blog!).
As I write this, my mom and stepdad are traveling to Colorado to a condo in the mountains. Marilyn, me and our families are meeting them there for the weekend. I cannot wait!

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.

Tuesday, September 16, 2008

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.

Sunday, September 14, 2008

Another monumental moment

Brody's first swear word: Shit.

He said it shortly after I spilled hot coffee on myself. And apparently, after I said it.

Perfect pronunciation.

Wednesday, September 10, 2008

Moonstruck musing

There's a line in Moonstruck, one of my favorite movies, when Loretta (Cher) tells Ronny (Nicolas Cage) why he hasn't had a woman since that wrong woman, and that Ronny's brother didn't really cause any of Ronny's problems. And Ronny yells at her, "What are you doing?"And Loretta yells back " I'm telling you your life!"

I always thought that was a poignant, strange, and exactly correct way to describe what she was doing. And lately, I wish someone would tell me my life. Because I can't figure it out.

When I was growing up I thought that when I turned 18, I would have life figured out.

Then after I turned 18, I knew when I turned 21 that I would know.

Then 25.

Then when I graduated law school. Or passed the bar exam.

Then when I got my first real lawyer job.

Then when I turned 30.

I gave up after that. Now I'm 37, and I feel like I'm making it up as I go along.

I could tell so many people about their lives, just like Loretta told Ronny about his life. I could tell if this person should stay with that person, or leave her husband, or quit his job, or move to a different country or have more children or any children.

And I could do that knowing just a few facts. And it might even be the right decision, but the point is - - it would be a decision.

I usually make fun of my sister, the one closest to me in age, for not being able to decide things. She's a libra, she weighs options. I'm a capricorn; it drives me absolutely crazy when she does that. I like decisions, which are firm and resolute. And unchanging.

I will be a lawyer. I will live here. I will get married. I will have children. That is that.

But more and more, I find myself . . . in the process of deciding something more than in the aftermath of the decision. I could do this, or that. We could do this, or that or. .. . oh! the other.

I wonder if I do that because I know more than just a few facts. I live with all the nuances and the variances and the subtle differences that every action and reaction create. I have lived with all of the heartache and heartmake and sorrow and bliss that has been my life so far and all of it informs everything I do, say, think or decide.

And the more I live, the more I bring to the decision and the more difficult that decision is to make.

So the result is, I don't make a decision.

Or maybe it's that the decisions I do make take longer? That would be the kind spin.

For example, when I was in law school, I got an offer to move across the country to Denver for a job. All my friends (and boyfriend) were in the city I was living at the time. Not to mention, all my professional contacts. My family was in yet another place, which was also across the country from (in a different direction from) Denver.

Here's how I decided this decision which would affect me for the next several decades: I went for a jog. At night. At the end of the jog, I was so high on endorphins, my thoughts on this subject of moving across country to a state in which I knew exactly 2 people were, "Why not?"

But the decision was made. I took comfort in the fact that the decision was made and never once thought about un-deciding. I told people all of the logical reasons why it was a sound decision, but really, it was because I was on a runner's high and felt good in the night air.

Now when a big life decision comes up - moving, finances, marriage, children - my decision is, "Why not wait and see what happens first?"

So as I struggle to analyze the queries facing me, I've come to the conclusion that I have either evolved into a brilliant tactician of life or devolved into a complete pansy.

I can't decide.

My mom and Obama

I just emailed this to my mom, and this is her email back. But before you read her email, let me just tell you that for the first, what, 25?, years of my life, my mom was about as Republican as you can get. We lived in a very wealthy area, in a very cloistered existence.

My mom moved from Germany in the 1950's, when she was 18 (She turns 70 in a few weeks). She is retired, and lives in New Mexico.

Thanks for this confirmation. Are they nuts in the Republican Party? I am working on the Obama campaign making phone calls on Monday nights. It is very interesting and I feel I need to do something. The whole Democratic Party headquarters here in Las Cruces are staffed by young people and some came here from other states. He said that he wants to be able to tell his children later on that he did everything he could to get Obama elected. I am getting very nervous about this election!

How proud of my mom am I?

To quote another female great, I love this woman.

Tuesday, September 9, 2008

Things to remember

Brody requests certain songs in that when going to bed, after the stories and the milk, when the two of us are just rocking. He will say "row row row row" if he wants "Row row row your boat," and he says "baby" if he wants "Rock a bye baby." He really really loves Rock a bye baby.

He is completely attached to his blankies. When I cover him and I in it when he sits on my lap, he gets all giggly and smiley and moves his legs like he's running because he's so excited. And he protests if, when I lay him in his crib, I don't properly cover him with them. And he says it just like I did "bakie, bakie." I never knew he cared how I covered him until he started protesting one night when I did it incorrectly.

Sometimes when Brody looks at me, he'll say "No mama!" pointing at me with his pinkie finger. I can tell he's about to laugh because he purses his mouth and holds his position, pretending to scold me, until I laugh, and then he does too. He likes to pretend-scold me, as I really scold him.

Hide. Brody loves to play hide, either on our bed or anywhere his blankie is. It never fails to make me laugh. Seeing Brody, siting up, with a blanket over his head, usually because he asked me to put it over his head, and him thinking that he's actually hiding. Jeremy or I have to say "Where's Brody? Where are you Brody?" Then Brody giggles and moves because he's so excited, and then we have to whip the blanket off his head, or he whips it off his own head, and we are so very surprised to see him!!!! Then he wants to do it over and over. One day I'm going to just let him do it until he gets sick of it. So far, I think we've done it around 12 times in a row.

He has started to say mommy and daddy, instead of mama or dada. Except when he says "daddy," he does so with an English accent. It sounds like "dahhddy" and he'll say it long and searchingly, "dahhh------deeeeeeeeee."

Brody has the high score on tetris on the iphone. He beat Jeremy and I. Seriously.

I decided that if you can't laugh watching Brody (trying to) eat a piece of spaghetti or ramen noodle, you are really in a bad mood. Because even with the flu, and vomiting, etc, he still made me laugh trying to shove that noodle into his mouth.

I looked at him coloring the other day in daycare. He was with the 2-4 year old kids, since he is now TWO. Even without thumbs, he colors just the same (ok, better than) the other kids who are older, and have thumbs. Just sayin.

In the Two's room, however, things are rough. He got hit in the face Friday and Monday, fighting over a toy. Apparently a little boy wanted Brody's toy, Brody didn't want to share (shocking) and so he screamed at the other kid. So the other kid whacked him. They don't tell us who the other kids are that our kid gets into fights with, and it's a good thing too, because Jeremy and I are not pleased.

Yesterday, Brody was running at daycare, and fell. And one of his teeth was loose. So me on my death bed with the flu, I go pick him up. Mouth bloody, tooth loose - what does Brody want? A cracker. Saltine cracker. Eats it as I drive him to the dentist.

At the dentist? Running around like a crazy man while I fill out his insurance. I don't even know if we have dental insurance on him.

We see the dentist. Either the tooth will be fine, it will fall out, or it will die and have to come out. Not much to do for loose baby teeth. Brody brushed his teeth in front of the dentist just for show.

The dentist noticed his overbite and said "Is he sucking his thumb a lot?" And as he's saying his, he picked up Brody's hand, and as I'm opening my mouth to say "He doesn't have thumbs" the dentist notices this (he hadn't before) and sort of startles. I quickly fill in the details. The dentist and the nurses - who hadn't noticed - are now amazed watching Brody brush his teeth, now knowing not only does this kid have a loose tooth, but an absence of thumbs.

It's weird how pride and love and awe for your child just wants to burst out at the strangest moments.

Tuesday, September 2, 2008

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.