Friday, July 24, 2009
Tuesday, July 21, 2009
Thanks to them, they have rearranged Hutch's one day a month "clinic" day to be a "clinic plus surgery for Brody" day. Just Brody. Based solely on my email saying that the pin needed to come out, Hutch agreed, and so Kris got an OR, an anesthesiologist, and two nurses to do the surgery. It's at 1pm mst tomorrow. Brody and I fly out from Denver at 7am.
The pin is about to poke through skin at his elbow. I would not be surprised if it did so before surgery tomorrow. It is swollen, warm, sore, bruised and ugly:
I think a normal person would be out of circulation. Not Brody. Brody played tennis, tennis, on Sunday. For the first time. We threw a ball to him, and it bounced, and then Brody hit it with a racquet. Probably around 40 times. I got chills watching him. I really need to stop underestimating that kid.
On to the title of the post. Rituals. I have rituals for a surgery, whether they are voluntary or not.
I will not sleep well tonight, worried that we will miss our plane.
I will also worry about food. No food for Brody after 5am and no juice after 10am. This is, on surgery no. 13, the thing I worry about most before a surgery. During the surgery I worry about darker things, but before, I fixate on the food issue. As in, denying food to my son.
The surgery is at 1pm, and our plane leaves Salt Lake at 5pm. Which means we have to be out of recovery at 3pm. We will probably not be on that plane.
Therefore, I am packing an overnight bag. In the overnight bag for me: change of clothes, excedrin, sleeping pills, toiletries, and a book. I have never not once read a book while with B at a hospital. I think about taking a flask but I know that is wrong so I will not.
Each trip, I buy some new distractions for Brody. Today, it is books: Horton Hears a Who, Why Do Mosquitoes Buzz in People's Ears, and some Richard Scarry book about airports.
I will bring too many wipes and not enough diapers. I have not yet mastered how many clothes or socks - I used to bring too few and now bring too many. I will check to see the bag has a blankie and his Bobby Jack plush monkey 27 times before we leave the house.
Brody gets to eat whatever he wants tonight: Old McDonalds, pizza, cake. Apparently I do too, since I ate a caramel apple for lunch.
Jeremy and I will be complete grumps to each other tomorrow morning. I will accuse him of not appreciating me and he will judge how well I packed a diaper bag. We will be running late and lament the loss of time to grab a Starbucks. Brody will be chattering away happily talking about airplanes and what color airplane he will ride on.
Once we get to the airport, we will hug tightly and longly and I will get teary eyed watching Jeremy say goodbye to Brody. We will rush in, check in, and get to the gate. Brody will not want to go through security. We will buy juice as soon as we get past security at the little store next to Frontier's gates. Brody is pretty great at the airport, watching planes and people.
On the plane, we each have our own TV. I will turn on cartoons for Brody and he will instead play with the earbuds and only intermittently watch the cartoons. He may or may not pass out. We will land in Salt Lake and wait 40 mins for the Shriners van to pick us up. When the van arrives, the other people will look at Brody to try to figure out what is "wrong" with him that we are getting on the Shriners van. We may also meet some other families who have flown in that morning going to Shriners hospital also. We will talk to them and have a great ride to the hospital on the bus.
In light of the truly amazing feat Shriners is executing tomorrow, I felt it appropriate to get something for Hutch and mostly for Kris for making this possible. Kris should be getting flowers any minute. I bought Hutch toffee from Rocky Mountain Chocolate Factory.
I hope it doesn't melt on the plane.
Buy this book:
I guarantee you will not regret this purchase.
The writing is sublime. The story is addicting. Bury Me Deep is loosely inspired by a famous crime that scandalized the country. In October 1931, a railroad employee at the Southern Pacific Train Station in downtown Los Angeles noticed something leaking from a passenger trunk. Inside, he found the bodies of two young women. The trunk's owner was a young doctor's wife, Winnie Ruth Judd, en route from Phoenix. The two women were her best friends.
A media sensation, the case captivated the country, with tabloids dubbing Mrs. Judd the "Velvet Tigress," the "Blonde Butcher" and, most famously, "The Trunk Murderess." To many, the case appeared open and shut. But the truth, as always, is far more complicated. That truth, or what might have happened, is what Megan's book explores. The ending sent chills down my arms.
Yes, Megan and I grew up together. I've known her for over 30 years. But even if you think me biased, read what our paper had to say about this masterpiece:
It's an exquisite book, told in delicate, shimmering prose that heightens the nightmarish quality of the story. Megan Abbott is often compared with James Ellroy, whom she admires greatly, but her writing is far more economical and focused, and her sensibilities are feminine to the core. This is noir mystery writing at its very best.
Buy the book here. I will get it autographed for you!
Wednesday, July 15, 2009
We have just reached over 1,400 votes!
Tomorrow is the last day for voting, and then the top 15 vote-getting entries are judged by a panel to see who wins. This is the panel of judges. The winners are announced on July 28.
I go from being optimistic to realistic and back again. It was a very fun experiment, and it is humbling and bizarre that we received 1,400 votes. That is a lot of people. I am strangely contented to know that at this point, the result is out of my control.
Truly, if the best thing that happens is that 1,400 people now know about the trials of recurrent pregnancy loss, the economic reality of the US healthcare system, and children living with Vacterl association, I think the world is a much better place. And I got to have a few goose-bump-and-teary-eyed moments when I saw how many votes we were getting. These are good things.
Speaking of control issues, we have our flight information. Brody and I go to Shriners July 22 for the day. I emailed the liaison for the surgeon at the hospital to make sure they knew that we wanted the pin out of the arm during the clinic appointment. This is the response:
That isn’t what I had in mind I thought we were just doing a clinic visit. Are you thinking the pin can come out in the clinic? Guess I thought we needed OR time for that. If it needs OR time that can not happen till Thursday and then I am not sure I can add it on. I will e-mail Hutch and see what I can do, I will let you know soon as I hear from him.
At first, I was really frustrated with this email. Because we really really really want the pin out and it makes me insane to have to negotiate about it and the other time, it popped out and we were in a hospital room and the surgeon just came over and pulled it out with essentially a pair of pliers.
Then I became exhausted and a wave of pleasantness came over me as I realized it is out of my control. As is the fact that Brody has had a cough and fever since Sunday, as is the fact that I went to three different pharmacies yesterday to try to fill a prescription for an antibiotic for him without success. The first pharmacy said they were out of it, the second said (a) that our health insurance didn't cover prescriptions and (b) the insurance company wanted to talk with the doctor before filling the script. The third pharmacy said the medication was recalled.
Interestingly, we had some leftover from April of the same drug. I just gave Brody that. It's more precautionary antibiotic anyway, as the pediatrician said he didn't really have anything but in light of the maybe upcoming surgery, he gave the script and a dose of steroids to Brody justincase.
I think the physical exhaustion (two nights of no then little sleep for Brody and us) has led me to this new acceptance of no control. I give up control. It has a nice ring to it.
I just re-read this post and I'm not nearly as down as it makes me out to be.
In addition to Facebook, I'm on twitter now as ckwilk. Mostly to follow the White House and a few professional tennis players who write amusing and enlightening things. Justin Gimelstob and the Bryan Bros. Also Andy Roddick for my sister who adores him. Also Rainn Wilson and Mindy Kaling from the Office. But I don't understand who can see my twittering or whatever they are called and I'm scared to respond to the famous players because what if everyone who follows them sees my response too? It's all very confusing to me.
We have an appointment with the urologist tomorrow to schedule the 13th surgery. I cannot even fathom having a 13th surgery. After a conversation with a friend this morning, however, I am grateful to have a child, and grateful even more that this 13th surgery is not medically urgent.
Friday, July 10, 2009
Brody also has a happy face, sad face, scared face, surprised face, and silly face. I'm trying to get them all on video because he goes from one to the next seamlessly on command.
Therefore, July 16 - pre surgery consult with the urologist to schedule a surgery for the hypospadias; and
July 22 (hopefully) Brody and I fly to Salt Lake to have the damn pin removed before it breaks skin and we have a co$tly trip to an ER; and get a further surgical plan on how to re-re-straighten the right hand.
Wednesday, July 8, 2009
Oh, wait, 1006.
Those are the votes we have so far. In 3 days.
The internet is a powerful tool. Facebook too. My friends who are helping publicize this? Sublime. Even if we don't win a thing, this has been a very humbling and heartwarming experience.
In truth, I'm starting to feel like a bit of a shit. Dante's mom put it on her carepages and her facebook. An online friend who has a son Brody's age and whose husband has ALS put it on their carepage, and emailed everyone in her contact book. It floors me. Both of them deserve this more than me. If we win, we can pick a different vacation. I want to pick a bigger house and invite them to stay with us.
Thank you to everyone who is forwarding emails and putting this link on their blogs and voting. I keep telling Jeremy our new number. He says not to get my hopes up. I'm not. Well, not really. But checking on the number is addictive.
I wonder if people are reading or just clicking on the button. I kind of love to think that people are reading, and that at the very least we are spreading awareness about Vacterl association and recurrent pregnancy loss.
Here is the link.
Tuesday, July 7, 2009
I'm stunned. We are so lucky. Thank you!
Click here to read our entry. To vote, click on the red vote button at the bottom of the page.
And yes, please link to that site, this blog, send emails, etc. Everyone in the world has my permission to forward the link to their friends and family and thank you thank you thank you!
Brody is a skinny kid. We let him eat Happy Meals. He loves french fries. We drive by a McDonald's every day from school. He asks for it almost every day (he doesn't get it).
However, Brody's name for McDonald's is Old McDonalds, like the song he sings. As in, "Mommy, I want Old McDonalds. I want french fries, and ketchup, and ranch, and lemonade."
Driving home one recent evening.
The full moon was in the sky.
B: Mommy, dere's da moon!
C: Yup, there it is. I see it too.
B: Mommy, da moon following us. Look!
C: (looking) You know what? It IS following us!
B: Da moon coming wit me. Da moon my friend.
Driving in the mountains at dusk.
C: Ok, baby, remember to look out for animals. This is the time of day the deer come out.
B: (looking out the window) I looking. I don't see dem, mommy.
C: Keep looking, sweetie.
B: I yike deer. I wanna be a deer.
C: You wanna be a deer?
B: Yeah. I yike a deer. Be one.
C: That's wonderful, sweetie.
B: I wanna ride a deer.
C: Oh, like Santa? You want to ride a deer like Santa?
B: Yeah, like Santa. I yike Santa. He's my favorite boy.
C: He is nice. Who is your favorite girl?
B: (pause) YOU my favorite girl, mommy.
C: Thank you, Brody. You're my favorite boy.
What about Daddy?
B: He my favorite too.
(Later that night).........................
C: Who is your favorite girl?
B: (looking at me like I'm crazy) I'm NOT a GIRL, mom-meeeeeee!!!!!
C: No, no. Who is your favorite girl?
B: (insulted that I am so stupid and horrified that I don't know his gender) MOMMY! I'm NOT a GIRL!!!!! I'M a BOY!!!!!!!
C: (laughing uncontrollably) Honey, I know you are a boy. You are a big boy.
The terrible two's have struck. We do time outs. It's rough.
When the time out is done, I say "Okay, Brody, you are done with your time out."He'll say, "No! I wanna stay in time out!!! Leave me alone!"
Sometimes we let him. But sometimes he looks so sad, like he doesn't know what to do with all of his grouchy feelings. After the time out, and the Brody-imposed time out, I have gone up to him and talked with him. I want him to know that I'm not mad, that we are friends. So I have said to him, "Brody and mommy are friends, honey. Can I have a hug now?" We hug and he's back to happy Brody.
Lately, however, when he cries during the first minute of the 2 minute time out, he says pitifully, "Mommy, I don't wanna time out! Mommy!!! I wanna be friends!!!!"
Let's just say he is very effective at manipulation. It breaks my heart. I tell him that we are friends, and I love him, but he needs a time out to collect himself.
At the end of the day, when the three of us are together, we ask Brody how his day was. He now asks us first, and repeats exactly how we say our day was.
J: How was your day, buddy?
B: Good. I hadda bizzy day. Reeewee bizzy day. How yer day daddy?
J: My day was good. I worked hard.
B: Yeah, I work hard too. Bizzy day. I play outside, I play dolls, I play circle time. . . I play outside......
Monday, July 6, 2009
The voting has begun.
Please vote. Click here and then click on the red button at the bottom of the page. Click from many different computers. Forward the link to everyone you know and beg them to vote for me. See what I mean about shameless? I want that vacation.
More news to follow.