Top nine things Catherine and I love about Jim Vredenburgh (my neuro-oncologist at Duke)

9. "We're all people." (See #1)
8. He made good (although sometimes a bit hard to follow) comments about the brain/mind connection.  Apparently my physical brain is having to negotiate with this other (tumor) material that's in there, and this may lead to tiredness.
7. One way to decrease seizures is through endorphins:  "Exercise.  Hugs.  Doing something nice for someone else."
6. He's also a big believer in de-stressing my life through such things as happy movies.
5. "Harmony is being restored in your brain."
4. He didn't bring in paperwork of any sort. He just sat there in the chair and made meaningful eye contact.*
3. He didn't even look at his watch the whole time we were in the exam room together.*
2. He emailed me at 6 p.m. on Friday to let me know that my MRI looked great.
1. We get to call him Jim.

*These were two observations Catherine made. James says she ought to be a spy, and he's probably right.

Casey Macphee

One day, while feeding Maybelle, i turned the computer around and googled John John of Sesame Street fame. You know who i'm talking about: he was a sweetly precocious child who, most famously, counted to 20 with Harry Monster. I showed that video to Maybelle, and also the one in which Harry and John John talk about up and down. We watched up and down twice, and by the end of the second run Maybelle had learned to do it herself. I figured it was a good thing, this video watching (and it has the added benefit of distracting The Ween enough that i'm able to feed her new foods without too much fuss.)

So, somewhere in the piles of literature Alison and i have collected on Down syndrome, there is a little chart that gives characteristics of people with an extra 21st chromosome, e.g. intelligence:poor; muscle tone: slightly below average to poor, and so on. The thing i love about this chart is that it includes the character trait social skills. This is what it says for that:

social skills: excellent.

This is almost universally true. I've known several people with Down syndrome and have found them on the whole to be gregarious, eager, helpful, positive and on and on. Sure, when well-meaning people say the sort of essentializing "oh, people with Down syndrome are just so happy all the time," they may be being slightly politically incorrect, but i understand why they say it.

It's not true, of course: i've lived with Maybelle now for two years and i've seen her get plenty pissed off. Thing is, most folks don't really know a person with Down syndrome well; they've only met socially, so they miss the subtle differences. I think the more nuanced observation is that many folks with DS are incredibly empathic.

I know that Maybelle has shown a real recognition of both anger and sadness since she was just a few months old. I recently cried in front of the Ween one day while we were playing together on the floor. She was just sitting there, paying me no mind and hitting buttons on one of the many music-making machines she owns. I was lost pondering some grown up stuff and got a little teary. While i'm drying my eyes with one one of her cloth diapers, i feel someone flop onto my leg. She grunted her way up into my lap in her low-muscle-tone sort of way, and the next thing i know, i'm getting a very sweet hug. She put her arms around my neck, laid her head on my shoulder, patted me softly on the back, and softly said mmm, mmm, mmm. A couple of minutes later she crawled down and went happily back to playing with her Mozart cube. Now, there's a social skill for you.

Another way The Ween exemplified this trait just recently--and the raisin dextrose for this post--was the way she reacted the first time she saw the Sesame Street video of The Ballad of Casey Macphee. Casey was an train engineer who had to get milk and cookies through a dangerous, snow covered, mountain pass. Midway through the song, the music is cut and an avalanche cuts off the way through the mountains. Train breaks squeal and snow pours down the mountain side. It's dramatic, but only in a Sesame Street sort of way. Well, The Ween, whom i sure was not able to fully follow this story on her first run through, just stops short. She stops chewing her food and is riveted to the screen. She looks very concerned, she looks over at me and says ooohhh, she looks back at the screen in concern, looks back at me. It was exactly like when you say about another person "they looked like they'd just seen a ghost."

Shortly, the music resumed, Maybelle clapped and smiled and resumed eating and watching the video. She has this reaction, to varying degrees of concern, every time she watches the video. I have fruitlessly tried to capture a stellar example of this on our Flip video thingy for weeks. I wanted to put it here on the blog for all to see. I finally got a fairly good one the other day and Alison has posted it on our vimeo site. Here it is for your viewing enjoyment:

Watching Casey McPhee from Alison, Walter, and Maybelle on Vimeo.

The latest from my neuro-oncologist at Duke:

"Definitely no tumor progression!"

New things I've learned about the medical world

• Always ask questions if you're the tiniest bit concerned about the process.  I discovered just in time this morning that they were about to do an MRI to monitor my TMJ.  When I noted that I don't have TMJ, I have a brain tumor, the staff kicked it into high gear and had to move me to another place for my scan.
• Drink water earlier in the day if you know you're going to get an IV.  As a person with small veins, I knew this, but had forgotten:  the IV is easier to insert if you're hydrated.
• Don't accept the offer to play you music while you're having an MRI.  Just do the earplugs.  You can't hear the music most of the time, but when you can, it makes you feel like you're on an episode of The Brady Bunch.
• When they say it'll only take them 20 minutes to make CD copies of your MRI for you to take with you, don't count on it.  It might be the case--as it was for me this morning--that your MRIs are so content-rich that copying them actually breaks the CD burner.  As one staff member noted cheerfully, if there's that much information, you know they got everything.

I should probably admit that some of my grouchy attitude about the medical system is because there are problems I'm discovering--and part is because every interaction I have with the medical system reminds me that I have a brain tumor that has to be monitored.  That second point, while true and useful, is a real bummer.

Two years old

Biffle* and I were reflecting this evening on the fact that two years ago right now, we were in the hospital--all three of us, although one was still in the box.  What an interesting few days, with husbands of random colleagues performing anal swabs and all sorts of other humiliating stuff happening.  August 24, 2008, Maybelle Biffle-Piepmeier exited her formerly cramped housing and became an inhabitant of the outside world. My mom and brother Trey came to Charleston this weekend for a low-key second birthday celebration.

Maybelle has--apparently in typical two-year-old fashion--decided she will eat about three different things, and that's it. She's resistant to new foods, so here was her initial response to her birthday cake.


She's half Piepmeier, though, so she rallied and started digging in.


So that you can see how 2010 Maybelle's life is, here's a picture of her signing and saying the word "cold" very dramatically as she's eating her ice cream. Note that her Uncle Trey is taking a picture of her with his iPhone, while I take a picture of him taking a picture of her. I'm sure Trey tweeted or gowalla-ed her.  Meta-levels of representation here. Very normal stuff for the Ween, who has a Flickr page, a Vimeo page, and a fair amount of blogging devoted to her.  In fact, she has her own Twitter page, although she doesn't have much to say there.  Yet.


It's hard to believe that she's been here two years. And yet life before her seems so, so long ago and far away.  It's good stuff to have a baby.  Particularly this baby.  And the older she gets, the more fun she is.  Happy birthday, Maybelle!

*You're all familiar with Biffle again, since he's just posted four posts--four!--in a row.  He still, however, has not told the story of when he knocked his tallywhacker off.

Taking the Opportunity to Make Fun of a Windbag

Alison and i started "comment moderation" on Baxter Sez shortly after we got to Charleston.

(Actually, we pretty much started this blog when we got to Charleston and used it as a way to keep friends and family informed as to how our move went, what our house looked like, etc., but it just stuck with us.)

We started "comment moderation" because almost immediately we started getting hate mail about Alison's career. We got notes like we know where you live and baby killers! and so forth. We thought it best to weed those folks out.

Generally, our editorial policy has been to post anybody that was reasonably sane, no matter their opinion. People named "Anonymous," however, usually haven't been posted at all no matter the quality of the comment. It's easier that way because those hiding behind the title of "Anonymous" almost always tend to be a blowhard, or hate-filled, or merely spam.

Occasionally, though (as is the case today), we get a disagreeable comment from someone able to read and write, someone that has something relevant to say, but just uses such thick jargon or turgid prose that they too are weeded out. Instead of providing today's anonymous with the courtesy of publishing them in the comments section i will post it here within the confines of the blog and provide my own bon mot-mentary:

Anonymous writes:

As an intellectual exercise, I recommend you read the below article. When one pontificates upon one's own emotional and elemental reactions to perceived injustices in the world followed by having the hubris to claim intellectual superiority for expressing them is not merely annoying, it is both self serving and intellectually dishonest. This article could be helpful to you and others who read your well penned but often off the mark opinion pieces: http://www.prospectmagazine.co.uk/2010/07/self-serving-white-guilt/

By Anonymous on Perry v. Schwarzenegger

Don't get invited to dinner too often, do ya?

A Random Story i Remembered the Other Day

Once, on an old television show called Sifl and Ollie, Sifl mentioned that his least favorite emotion was "itchy." I found this so funny i made a mental note to make comments that followed the same spirit. It wasn't that hard to implement because i'd been doing something like it for years, viz, occasionally i would start to tell a story by saying this is one of the 10 funniest things that ever happened to me, etc. I just made the story a more Siflesque thing by merely changing it to this is the 7th funniest thing that ever happened to me.

So, to do that now, i'd like to tell you the 2nd most boneheaded thing ever done to me by someone: (locations and people changed to protect the unwitting)

I useta work at a bakery near Nashville. We baked delicious things and had a very faithful crowd that would stop in almost daily to get a baked good. A lot of the customers, or course, were people that worked nearby. In the case of this story, one of the near-daily customers happened to work exactly next to the shop. I enjoyed this visit from said customer because she was exceptionally beautiful. And i do mean exceptionally beautiful.

She was an exotic looking woman with effortlessly silky and shiny black hair. She was a beautiful bronze color and had smooth blue eyes that looked out from just right locations on a perfectly formed heart-shaped face. Below those eyes were two curvy, full red lips she wisely kept unmarred by lipstick. All of this--the hair, the eyes, the lips, the heart-shaped face--she kept nicely balanced on a slender neck (occasionally adorned with a simple white kerchief or some other understated adornment.)

Now, i'm a face person, but under the neck she was nigh on perfect also. She wasn't too thin, or too voluptuous. She didn't slouch, nor did she walk too proudly. In every way, this was one of the most beautiful women i've ever looked upon, and my heart would skip a beat when she came in to the bakery.

There was one problem, however: She was dumb as a post.

You may have heard an apocryphal tale concerning turkeys and how, sometimes, they drown in a rainstorm because they continue to look up to see what's hitting them on the head. This isn't true about turkeys. It was true about this woman, however.

So anyway, i was telling a "friend" one day about this woman, describing her in the same glowing terms, and my "friend" interrupted me saying, oh, i know her. She went to school with me. We both agreed on how we both found her astonishingly beautiful. I then lamented to "friend" that it was a shame that such a winsome person could be soooo dumb. He agreed whole-heartedly, and we shared, what i own now, was a somewhat cruel laugh. I mean, she couldn't help it if she was dumb, could she?

A few days pass and i'm there at the counter and our exotic protagonist walks in the door. As she's standing at the counter trying to figure out how to use a knife to put butter on a scone, i passed some pleasantry on to her like it's a beautiful day, isn't it? She responds by saying something like, yes, it is, but it's a wonder i'd notice given how stupid i am, right?

Well, of course, i'm speechless. I hemmed and hawed and finally said, why do you say that? She told me "friend" had told her about how i thought she was soooo stupid. Being rendered speechless i just crawled under a large sack of flour and waited for her to leave.

Later that day i happened up "friend" again and, of course, said what the hell were you thinking, you jerk you?

"friend":Well, i've always thought she was stupid, too, and thought someone needed to tell her.

me: and you told her i thought she was stupid?

"friend": Well, yeah. I mean, if i told her i thought she was stupid she would hate me, wouldn't she?