Thursday, August 31, 2006

Tabula Rasa

I'm doing OK, just still depressed.

Not the weepy kind of depressed, more the everything's heavier than it should be and takes a lot more effort, especially going to bed at night and getting out the door to work in the morning kind of depressed.

But it's turning into fall, which is both my favorite season of the year and a season that almost requires a bit of melancholy. Also, there's a three day weekend this weekend, I have a birthday coming up, we're going to Disney World soon, and my sister's wedding is only a few weeks away.

Plus, Ellie's birthday, Thanksgiving, and Christmas are right around the corner. Visits from family, lots of holiday festivities, and then - before you know it! - New Baby arrives!

On another positive note, those of you who've been to our house would not recognize the Chinese guest room. For one thing, it has no furniture except for a tiny desk and computer in the center of the room. For another thing, there are no window treatments and nothing hanging on the walls. Without all the gold fabric and reed/bamboo accents, that small room is a little echo-y. Last but not least, the walls are no longer red! They're a lovely shade of 3-coats-of-primer-white. The Big Girl Room is coming along! (All thanks to Paul, of course.)

Pictures soon. Downloading from the camera seems like a lot of work right now. Happy Labor Day weekend, Americans!

Honesty, then a little more anger

Another thought on the whole evaluation process.

There are main two reasons why this label thing bugs me so much, a "good" reason and a "bad" reason.

The "bad" reason is because intelligence is important to me and I attach more importance than I should to "measures" like IQ and labels like "smart." I've always known this about myself; it's something I struggle with daily and have for the past 3+ years.

The "good" reason became clear to me earlier this evening when I was talking to my youngest sister, the social worker/family therapist. Although she has to use similar tests and labels all the time at work, she hates them and makes a point to devalue the results to the kids and families she works with, for obvious reasons.

She pointed out to me how dangerous these labels can be, for people who take them too seriously. Part of the reason that Ellie is doing so well is because we expect so much from her. And if we (as a society) start dramatically lowering parents' expectations of their kids, that can have a profoundly negative effect on what the kids achieve.

That's not an issue with us and Ellie, but I am concerned that it will be an issue for Ellie with her new teachers and therapists. Imagine that you're a teacher and you're getting a new student diagnosed with a developmental delay.

Imagine how you might treat this child, if you're told, "This student should be able to keep up in your class. Please let us know if any difficulties arise."


"This student is severely cognitively delayed. She will have an aide in here with her full-time to help her keep up, and she will be pulled out of class for an hour each day for special instruction and therapies."

Sure, the teacher might know that the tests are skewed at this age, but her expectations can't help but be different depending on what she's told about the student. We all know about the importance of first impressions.

I've heard far too many stories of kids with special needs not being held to the same behavioral standards as their peers (when appropriate, of course) and consequently not achieving everything that they're capable of achieving.

This is why I will reject any such labels being in the IEP report, and will insist that Ellie's given more appropriate labels or none at all, if the services she's offered seem inappropriate. I don't want the system to hurt her development; I want it to help her!

So far, most of the people involved with the evaluation process seem to be of the mindset that "the more therapies she qualifies for, the better!" I disagree. More is not always better; sometimes more is just more. Like the extra square of pizza I ate after dinner tonight.

Tuesday, August 29, 2006

Evaluate This

I'm not going to mince words. Today sucked ass.

Fortunately, I've moved beyond tears into anger, which is a far superior place to be.

Yesterday was Ellie's Individualized Family Service Plan (IFSP) 6-month review. Twice a year, the program director at Ellie's school, each of Ellie's therapists, her state early intervention service coordinator, Paul, and I all get together. We go over Ellie's progress over the past 6 months toward achieving the goals we set last time, then we set new goals for the next 6 months.

Yesterday's meeting was our last IFSP, because Ellie is in the process of transferring out of the early childhood program and into the school district. From her third birthday on, Ellie will receive preschool and therapy services through her school district rather than through the First Steps program. This transition involves a lot of meetings, a lot of paperwork, and a LOT of evaluations.

I expected it to be painful.

I didn't expect it to be this bad.

Yesterday's meeting went very well. Ellie has made incredible progress in all areas (speech and language, gross and fine motor, adaptive/self-help skills, and cognition) recently, and it was, frankly, fun going over her progress with her team. We have a good team. Things are going well. Time to upset the apple cart.

We were at the Special School District preschool evaluations office for 4 hours today, and Ellie did fantastic. She was in a good mood and she was compliant, but she also showed all sides of her typical personality so that the evaluators could see this is what she's like when she's frustrated, etc. She was amazing and the evaluations process seemed to go very well, though Paul and I couldn't watch most of it. We were in the room next door being interviewed, one at a time, by each of the 5 members of the evaluation team. That wasn't totally fun.

The team went aside to talk for a bit, then came in to go over their report with us. (We'll be receiving a copy in the mail in a couple of weeks). In reverse order, we heard from the speech pathologist, the PT, the OT, and the school psychologist. The evaluations of Ellie's speech/language and motor skills were perfectly aligned with what we're seeing at home and what Ellie's current therapists are seeing. The delays found were unsurprising, and we were pleased that she qualifies for speech, OT, and PT through the school district. We were also pleased with how positive the evaluators were about how Ellie's doing, how far she's come recently, and how she's likely to progress in the months to come.

But first we heard from the school psych about Ellie's social, behavioral, adaptive, and cognition scores.

It's worth noting, at this point, that Ellie's current preschool teachers tell us how well she keeps up in the classroom, mostly full of typical kids (there's one other little girl with Down syndrome). Her Developmental Therapist, who sees Ellie at home and at school and is a former special ed teacher and school diagnostician, tells us that the only thing that keeps Ellie from participating fully in class is her occasional stubborn/defiant behavior. We haven't had any real "cognitive" goals recently because she met the big one: plays appropriately for her age and with other children in the classroom.

So this school psych evaluator woman tells us that Ellie has moderate delays in adaptive behaviors/motor. Yeah, we know that she's nearly 3 and isn't fully potty trained yet; can't dress herself, and still sticks out her tongue when she drinks from a straw, etc. No surprise.

Social Interaction and Communication: high score.

No behavioral delay.

As far as cognition, here's what she can do (all according to the school psych):
  • match colors
  • label pictures
  • age-appropriate puzzles - though a little slow
  • put pegs into a pegboard
  • understands pronouns
  • discriminating between objects
  • interest in listening to a story, pointing out pictures that go with the text, making animal sounds, etc.
Now for the verdict. Ready?

Severe Delay in Cognition.


I'm a bit flummoxed, of course, so I incoherently press for more details. Well, she can stack 5 tiny blocks. She should be able to stack 6-8 of them.

Um, OK. That's more fine motor than anything else. And a one block deficit is so totally not SEVERE. WTF?!!!

She gave Ellie a developmental age of 21 months, which is also totally hogwash. I know 21 month olds. I see how they play. They are more into pushing a car and throwing a ball then they're into ordering, phase 2 in imaginative play. For example, Ellie loves to give her doll something to drink, then undress her and put her on the potty, clap for her, wipe her, then put on a diaper. This, for the curious, is very age-appropriate play for a 34 month old.

I know there are delays. I am not hiding my head in the sand here.

Still. I also know that there are lots and lots and lots of kids who are much much worse off than Ellie. And I know that "severe" doesn't come close to describing this kid who can play Hi Ho! Cherry-O and talk to the baby she can't see but knows is growing in mommy's tummy.

So. I don't note a severe delay in Ellie's cognition. Ellie's current developmental therapist doesn't note such a delay, nor do her classroom teachers, nor her grandmother, who's also an elementary school psychologist who does this evaluation stuff for a living. Ellie's pediatrician, who specializes in kids with Down syndrome and has one of her own, is convinced that Ellie does not have severe (or even moderate) cognitive delays.

This is how I've moved from the tears to the anger. The eval was wrong. Flat wrong. Worse, the scale was off (Mom explained the scales to me, and I suspect this particular interpretation has a lot more to do with the Special School District drumming up business for itself by qualifying kids for more services). And the instrument was faulty.

My mom's school district only uses this particular test with kids who are totally non-verbal and there's no other way to test them. (Note: the ceiling on Ellie's single-word vocabulary was 3 years and 11 months; not quite "non-verbal" but rather a whole year older than she is.) My youngest sister was evaluated with this tool when she was 6 months old.

So I'm even working through my fury.

But I'm still a bit sad and mad and depressed that it looks like I'm going to go into Ellie's experience with the school district having to fight for my daughter, when I was hoping against hope that we could all just get along.

And at the Individualized Education Plan (IEP) meeting in a few weeks, if they come back with ugly words like "severe cognitive delay" and want a ridiculous amount of apart-from-typical-kids time for Ellie, I'll be ready to go to bat, threatening a lawyer and demanding that she have a new eval by a new evaluator, and refusing to sign the IEP until it accurately reflects the needs of the daughter I know and love so well.

Monday, August 28, 2006

He Just Makes Me Uncomfortable

There's danger in "I feel" statements, especially when we don't examine them closely enough.

Our culture has taught us that our feelings are valid, that we should pay attention to how we feel, and that we should honor our concerns. Gone are the days of suck-it-up-and-deal. We no longer feel obligated to spend Thanksgiving sitting quietly next to the great-uncle who molested us; we can speak out and refuse to attend the family celebration if he's going to be there.

At least, that's the way it's supposed to work.

But there's a big potential downside here, too, and I noticed it at work several years ago when my company started hiring security guards to walk the office halls after hours.

These men are there, ostensibly to make the employees - mostly women at my company - who work late feel safer. They have the opposite effect for me.

For one thing, the constant presence of the security guards reminds me that there is something to fear. More importantly, the guards themselves are sometimes quite creepy.

One guard had few teeth, incredibly offensive body odor, and a really bad habit of standing too close to me, while effectively blocking the only way out of my office, and talking to me for far too long. Dude, I'm not at work at midnight because I feel like chatting. I'm here because I'm on a major deadline and I'd really like to just finish up and get home to bed as soon as possible.

He creeped me out so much that I took to carrying a metal letter opener with me when I left my office to walk to the bathroom at night and on weekends, and I kept it within easy reach at my desk when I thought he might be stopping by. I also asked Paul to come by occasionally to bring me dinner. I called home to check in regularly too.

This guard was white, and as far as I know he was never fired. (When I came back from my year off, this particular guard was gone but he'd been there quite a while and might simply have left the job for another one.)

Another guard, who started around the same time, put out a completely different vibe. He was incredibly nice. He too would talk to me when I worked late at night, and I wished he would just let me work in peace, but his air was far less threatening. He never blocked my office doorway, and he never talked about violence or danger.

He was black, and he got fired after a few months. Some of my coworkers complained (anonymously, of course) that he made them "uncomfortable." When pressed, no one could provide an example of exactly what this guy had done wrong, but just being alone in the office with him at night was "uncomfortable" for some of my suburban, white, female coworkers.

Maybe he stood in the hallway and chatted with another male employee (also black, also fired) where they had a clear view of the women's restroom. Of course, there's a clear view of the women's restroom from just about anywhere in the main hallway. But that was enough.

A weekend janitor was recently fired for a similar reason, and, in fact, it turns out that an awful lot of the black men in maintenance, janitorial services, and security are fired because of employee complaints of "discomfort." The official reason given is usually something about chatting in the hallways at work, though we all do that, or no reason at all for the sub-contractors like the security guards and janitors.

This is insidious and hard to prove, but it's racism all the same. Why does this particular security guard bug you? Does he stand too close? Spend too much time gleefully reminding you of how vulnerable you are? Regale you with tales of strange cars parked near yours in the parking lot? Remind you of how he knows your license plate number, and point out that you two are the only ones in the office this late? No? Hmm.

I wish I knew how to fight this. I wish I knew what to do other than to get futilely furious.

Sunday, August 27, 2006

Little Geek

All weekend I've been reading about how surprisingly fat our kids are today. About how little exercise they're getting, and how unhealthy they'll be tomorrow.

So on Saturday we had Ellie take Lizzi for a walk, which went surprisingly well. She's been wanting to do this since she was about 6 months old, and, finally, she can do it, full control of the leash and all. You know, over the past month or so, this kid has really made huge leaps. She's seeming so . . . grown up.

This morning we skipped church and spent an hour playing outside in the rain, stomping in puddles, walking up the block in the rushing gutters, pushing a toy car through rivulets, riding a trike around and around the driveway, and, best of all, playing with the umbrella.

(By the way, Ellie's BMI seems to be 15.5, well below the average for her age.)

So tonight, we stayed inside and played Hi Ho! Cherry-O. I can't tell you how excited I am that we're officially entering the Board Game Age. May it never end for Ellie, as it hasn't for me. Even though she cheats like mad. Don't think I didn't notice you scooping up those extra cherries, little sneakie!

Friday, August 25, 2006

Techno Wiz

I spent much of Tuesday unable to use my computer because 2-1/2 year old Ellie changed the administrator password and locked me out.

"That's impossible," Paul said when I called him, "You have to type the new password twice."

And that did turn out to be the key. I knew that the password wasn't the same as it had been, so she must have changed it. Ellie had cleared the field, using the touchpad that I struggle with and she seems completely comfortable with. And then she hit enter twice. So she cleared the password and changed it to nothing. Awesome!

Yesterday morning she did something to the TiVo. She didn't activate the KidZone controls, but she did use the remote control to lock it up somehow so that we couldn't pause the live TV. Or change the channel. Or view the TV Guide. Or access the TiVo menus, including "Now Playing." So, basically, until Paul came back from Orlando, our choices were no TV or all Nickelodeon, all the time. Wahoo!

I built my own PC in college, going to a computer show to buy each component cheaply from various booths. Unlike most of the people I work with, I'm completely comfortable with Internet bulletin boards, and I totally know what a blog is. I never thought I'd turn into a tech dinosaur so soon!

Wednesday, August 23, 2006


I expected Ellie to resume some younger-child behaviors after the baby was born. I know that that sort of thing is typical, so I was prepared for it. But I wasn't expecting her to start before the baby was born!

Lately, Ellie has taken to wanting to play with bottles, and will ask me to fill a bottle with water for her. Note that she never took a bottle as a baby, and still doesn't really know how to work it. She mainly likes to chew on the nipple while a little water dribbles out.

She has started rejecting the potty and most diaper changes, again things she never did as a baby/much younger toddler.

And she went through a two-week period of screaming bloody murder at bedtime, and/or wanting to be held and rocked until she was soundly asleep. Now she's pretty much resumed her regular bedtime routine, but she's getting up at 5:30 am. Yawn.

Delays? No delay here. She clearly gets what's about to happen at our house and she's preparing in advance!

Snapshot of my morning. Ellie's dressed and ready for school, sitting in front of the TV while I get myself ready. Paul's out of town on a short business trip. I'm freshly showered, hair nicely styled, wearing my pretty work clothes, booting violently into the kitchen sink. Classy.

Tuesday, August 22, 2006

Children 2B Found

I nearly lost Ellie on Saturday.

We were at an incredibly intense birthday party, in the Galleria. Friends 2B Made is, apparently, Build-A-Bear for tween girls. This party comprised 2 to 4 year-olds, not quite tweens, so this presented some challenges.

For example, most of the mamas spent the entire time hunched over nearly double, running around the store, trying to corral little girls into paying attention to the right thing at the right time. "No, not in your mouth!" is probably not something the sales clerks hear every day, but I'm sure they heard it a lot last Saturday. Ellie certainly seemed to think that the plastic curling iron looked like something that would taste good if just sucked hard enough.

At one point, Ellie and I were hanging out in the "hair salon" portion at the back of the store, while most of the other mother/daughter couples were kickin' it near the registers up front. The cashier was calling Ellie's name insistently (presumably to ring up her doll) so I left Ellie trying to sit on the doll's salon chair and went up to take care of the Visa part of the affair.

Once up front, I waited. And waited. And waited, occasionally craning my neck to try to spot Ellie in the back of the store. At one point, I told my friend Laura that I'd misplaced my daughter.

"Oh, she's back there with Vivi," Laura said, and walked to the back by the girls. I rested a little more easily, still keeping an eye on the wide open front of the store so that no little girls could sneak past me, and continued waiting.

Just as it was finally my turn to buy a fairy princess outfit for Ellie's new doll, a woman walked into the store and came up to the counter.

"There's a little girl out in the mall. She has a nametag from this store on her back, and it says Ellie."

Well, that's just about heart stopping. I ran out into the mall, and immediately I saw Ellie out on a little peninsula over where they like to flood the center of the Galleria when there's no Christmas tree or special art exhibit to be shown. She was apparently planning to go for a fun little wade, except for the nice middle-aged lady holding on to the back of Ellie's jumper.

See, it turns out that Friends 2B Made and Build-A-Bear are actually the same company. And in the spirit of corporate boundarylessness, they've connected the two stores through a small hallway in the back. So even if a mama is keeping a eye on the front of the store, her little one can still slip through the back and wander out into the mall through Build-A-Bear.

This is a good lesson for me. Not because Ellie and I spend so much time in malls and I need to watch her more closely.

No, I was starting to feel pressure to do something really cool for her third birthday in October, but I am reminded now how much I do not want to do this. Instead, we will have a traditional party here at the house, with 3 friends (and their parents) invited, complete with homemade cake and games like ring around the rosie and duck duck goose. The key is the enclosed environment. Enclosed! Like locked and child-proofed doors!

The kids probably won't rave about it at school for the next 12 months, but then again, they probably wouldn't rave about a trip to Disney World for that long, either. They're (almost) 3, after all.

Monday, August 21, 2006

Sweat and Growth

First of all, a new carnival! Check out True-Life Tales of the Fourth Trimester: Welcome to Sisterhood Six's second Carnival of Motherhood!

Also, I want to note that working out is very hard while pregnant. It's not just the physical difficulty, though that's not to be overlooked. Almost from the very beginning, I found that I was breathing harder and tiring more quickly. My workouts shortened, then stopped for the remainder of my first trimester (from around the time I started "spotting" and worrying about miscarriage) and didn't resume until well after I felt better, in the second trimester.

Even now, in the height of that mythical second trimester energy rush and before my belly becomes too unwieldy, I tire much more quickly than I used to. My 45 minute workouts have become 25 minute workouts, though they're still about as frequent and intense (don't worry, I make sure that I can still breathe OK, so the baby's not suffocating in there).

But it's a lot harder to make myself go downstairs and sweat to The Gilmore Girls 3-5 times a week. I know that the exercise is good for me, good for the baby, good for the pregnancy and delivery and recovery.

But I'm used to being able to see results from a diligent work-out routine. Yet my weight is slowly creeping up, despite my exercise. Sure, I'm eating some stuff I shouldn't, but I'm not bingeing. It's pregnancy. And while working out doesn't always equal weight loss, there's usually some compensation in the way clothes fit. On that point, too, I'm losing ground (so to speak). Pants that fit last week are way too tight this week, and this trend will likely continue until January.

So working out right now has purely cerebral benefits. I know it's a good thing to do. But it's not easy to sweat so much without being able to see the physical pay-off.

Finally, a tip for the considerate who want to comment on women's pregnancies. Often, this is OK. Often, we pregnant women like to talk about our pregnancies a little. Not always. But often. So we don't usually hate you for asking. Unless we're feeling pretty bad. And if you do it nicely. For example, do you see the huge difference between,

A) How many weeks along are you?


B) How much longer do you have left?

It's not that subtle. One question clearly implies that I look like a whale. I do not. I look just fine, if I do say so myself. This interpretation is heightened when the questioner is clearly shocked by my response. "Oh! Really?"

"You're starting so show a little!" a woman I often pass in the office hallway remarked to me today. That was nice. Excitement, not judgment.

I am 21 weeks pregnant. Feeling good. Paul just finished painting the family room and hallway, and the new curtains are in the dryer. The living room and foyer and bedroom are clean (except the floors. I don't do floors.). Work on Ellie's big girl garden room to commence this weekend!

Saturday, August 19, 2006

The First Weeks

"Be paranoid about who you let hold her," Ellie’s pediatrician told us at her one week well-baby check-up. With this official sanction of our personal preference, Paul and I were off.

We created log charts on the computer and kept a stack of them beside the rocking chair in the nursery. I nursed Ellie every two hours, unless she was soundly asleep, and logged each nursing session.

Twenty minutes on the right breast followed by fifteen minutes on the left breast looked like “20L, 15R” in one column of the spreadsheet, up to twelve entries a day for months. We also logged each wet and dirty diaper and the amount of sleep Ellie was getting, and the spit-ups. It was our way of trying to understand and control the incomprehensible, the impossible.

At every early pediatrician visit, I had a detailed list of questions in my notebook, about everything from Ellie’s poop to her breathing and eating. Nothing was too small to worry about. She was so small and fragile, and we’d been told that she was soon going to get very sick. We’d never done this before and we had nothing to compare our experiences against. Was this normal? How about this? And this?

At her second pediatrician appointment, when Ellie was all of 12 days old, I was already asking questions like: when should I schedule her first appointment with the pediatric ophthalmologist? I was vigilant. I was taking care of my baby the only way I could, and thankfully she seemed oblivious to my fervor.

Today Ellie is 2 weeks old and she can do lots of things!
  • Creaking barn door
  • Cooing
  • Soft murmurings in her sleep
  • Sneeze! Cah! (almost a cry after the sneeze, adorable)
  • She usually only cries once, then stops. Waah!
  • Lip smacking, sucking.
  • Smiles, closed and open mouth - Wide eyes
  • Wail, wide open mouth - Closed eyes
  • Yawn, wide open mouth - Eye slits
  • Latch face, wide open mouth
  • Rosebud/pursed lips
  • No lips
  • Big lips
  • Little tongue
  • LONG tongue
  • Nursing tongue, curls when hungry”
The list of her various movements at two weeks takes up two notebook pages by itself, and then there are the exhaustive lists of each visitor and gift received.

After about two weeks, my developing habit of passive-aggressiveness began to show up on the pages of the notebook.

"Today Paul went back to work and Ellie and I stayed home by ourselves for the first time. It went pretty well, although Lizzi got into the trash in the nursery, made a mess, and got sick on the couch. Hopefully, Paul will put the nursery door up tonight. :) Then Mommy can shower."

In addition to the usual newborn milestones like when Ellie began to hold up her own head, I catalogued every vaccine shot she had and every movie we went to see. In Ellie’s first few months, we went to see more movies than we were to see in the next couple of years,though fortunately we didn't know that at the time.

There were some real benefits to the newborn period, not least her portability and ease of soothing at the breast, but there were some real downsides too, like the 10 wet and 6 poopy diapers every day, and the constant worry about every potential catastrophe in the fragile little life for which her parents were wholly responsible.

Mostly, though, I couldn't have imagined that I'd gladly wake every couple of hours throughout the night to my baby's soft cries. That I'd smile at the prospect of seeing her again, of smelling her scent, of cuddling her to my breast, of simply being awake with her, overwhelmed by love.

If only there was some way to experience that without the other parts, particularly the terror and the yuck.

Thursday, August 17, 2006

Ask and You Shall Receive

I was eating my breakfast in the family room, and Ellie wandered off into the kitchen. I couldn't see her head over the peninsula counter, so I asked,

"What are you doing, Ellie?" as I'm sure I must several times a day, everyday.

"Lizzi!" she replied.

I listened, and sure enough, I heard her peeling off and sticking magnets to the frig. Months ago, someone gave us a 3 inch cut-out magnet of a pug that looks a lot like our Lizzi. Last weekend, Scott and Jessica gave us a 15 inch version. Ellie thinks it's great fun to have "Lizzi" on the frig, in small and large versions.

But the point is that I asked her a question. And she answered me! And her answer was not, "No!" This is a first.

I was talking to my mom later today, and mentioned that the language gap between Ellie and other children her age - particularly children I read about in blogs - is growing. And she's never really been very delayed with her language, so this is hard for me to watch. She walked slower, she still can't jump, she gains fine motor control more slowly - this is all to be expected. But seeing her expressing herself in (often hard to understand) single words while reading about other little girls her age talking in paragraphs, well, that's harder for me. Ditto for seeing other kids not too much older than Ellie doing more complicated puzzles.

There are delays. I know this. I have a realistic view of Ellie's diagnosis and abilities.

But seeing an increase in the gap, well, that's always going to be hard.

Then my mother related anecdotes from a couple of her (teacher) friends that included dialogue with their sons, also Ellie's age.

"Cookie. Me!"

I am reminded that there is a range of what's typical for this age. That we will get there eventually, and it's still so, so very sweet when we have breakthroughs and successes like we had today.

(I also found two tiny turds on the family room floor after my shower this morning. But we're focusing on successes here, so I'm not going into that.)

Wednesday, August 16, 2006


I had my ultrasound today, and it went very well.

Over all, I think I've been a bit negative about this pregnancy. From the beginning, I've been scared: afraid to get attached, afraid to acknowledge that it's for real, for fear that we'll learn something horrible and suddenly it won't be.

I know a woman who struggled with infertility for years. Finally, via IVF, she and her husband conceived. At the mid-trimester ultrasound, they learned that their baby had anencephaly, and they had to terminate at 20 weeks.

I imagined something like this happening to me, and I was afraid to get too attached. Once something unexpected does happen, I don't think you can ever be quite as complacent again. Suddenly every problem, no matter how rare, seems possible. Likely, even. At least to me.

I heard a man talking about cerebral palsy on NPR this morning. Now I'm thinking about cerebral palsy.

But I'm finally relaxing. I'm finally beginning to adjust to (read: accept) this pregnancy.

Paul and I waited for an hour before being called back for the ultrasound. Once it began, the scan itself took another hour. At one point, near the end, the technician said,

"I can't get a picture of the 4 chamber heart. I'm going to go get Dr. Dicke so that he can try to get a better shot."

Thump thump. Thump thump.

"We heard those same words three years ago," I explained. "Right before Dr. Dicke told us about our daughter's AV Canal defect."

The technician was apologetic, and quick to explain. We'd seen the 4 chamber heart, she reminded us, but she hadn't gotten a picture. And she had gotten good pictures of all the septa, both arches, everything was fine. She just couldn't get this one last required picture. Then the baby moved, and she captured what she needed.

We didn't even see the doctor before we left. Everything was fine. Everything is fine.

But this baby was modest. [She] likes to hang out in one tiny corner of the womb or another, often right under my belly button (where it's "dark" on the u/s) with her legs drawn up tightly against her body. Once, when the technician was right underneath the baby getting a "breech" shot, she actually put her hand down between her legs to obscure the view.

The technician is pretty sure that New Baby is a girl. I think there's plenty of room for doubt. And that's about perfect for me.

Bedside Manner: CEUs should be required

Monday was my sister's ultrasound. She's just turned 29 years old and is 18 weeks pregnant. She got her quad screen results last week, which bumped her from a 1 in 750 chance of having a baby with Down syndrome (based on her age and the fact that her sister has a child with Trisomy 21) to a 1 in 3500 chance. About the best result she could have asked for. The ultrasound showed a healthy fetus, with a well-formed heart and gut, and found no hard or soft markers for Down syndrome.


The "specialist" told my sister about a tiny, bright area on the heart. An enhancement. An echogenic intracardiac focus. A tiny calcium deposit. It turns out that these happen in up to 10% of typical pregnancies, and usually resolve themselves by sometime in the third trimester. This is not considered a birth defect or any sort of health risk. No biggie.

Except that in women who are over 35, have a questionable quad screen result, or have other "soft markers" for Down syndrome on the ultrasound, it can indicate an increased risk.

My sister does not meet these criteria. Further testing is not indicated, nor is genetic counseling, apparently, and she is adamantly opposed to having amnio. But now she has to go through the rest of her pregnancy with this cloud of doubt over her head.

Why? Why?! Because some doctor was so worried about covering his butt, or not getting sued, that he felt like he had to tell her this piece of "news" even though there's almost no chance that it's newsworthy. In a published study of 12,672 pregnant women, evaluated in the second trimester, "there were 479 cases of IEF and 11 cases of trisomy 21. Only one fetus with trisomy 21 had an isolated echogenic focus." Meaning that of over 12,000 pregnant women, only one woman had my sister's risk factors and was carrying a fetus with Trisomy 21. That's a pretty small risk, indeed.

It turns out that there's a pretty good chance of one of these "soft markers" showing up on a typical ultrasound, and these "soft markers" are often more common in typically developing fetuses than in fetuses with Trisomy 21. So if doctors just drop these little bombs on pregnant women without qualifying them, we end up with a whole lot of upset families. And possibly some unnecessarily invasive testing and/or terminations.

Obstetrical Sonography: The Best Way to Terrify a Pregnant Woman

Sunday, August 13, 2006

Girl Scout or Chicken Little?

Our big Ultrasound (High resolution, Level II, whatever you want to call it. Not the pretty 3D kind from the doctor's office, the kind we go to the hospital to get for really really detailed measurements. Just in case.) is Wednesday.

I am saying for the record that I do not want to find out the baby's sex.

Paul, surprisingly, really really does.

He gave me a "joking" ultimatum: Do you want #3 someday? OK, then we're finding out.

Um, OK. He doesn't really mean the ultimatum (I don't think!) but he does mean that he's really serious about wanting to know. We've "compromised." We won't seek out the genetic results from the CVS. But if we see the proper angles during the ultrasound . . . well, then we'll know. So. Wednesday!

Anyway, I was talking to my mom a couple of weeks ago about plans for the birth and whatnot.

"I plan to donate New Baby's cord blood to the bank," I told my mother, "unless we can determine that it's a perfect match for Ellie. In that case, we'll pay exorbitant sums to have it stored."

"Why?" she asked.

"Well, for the leukemia, of course."

I'm more like my mother than I think I am. I do plan for the worst. Just in case.

Friday, August 11, 2006

Grey Matter

I had a very vivid dream early this morning.

I was me, and still just this pregnant. My sister Jessica was my sister Jessica, and still just as pregnant as she is (due a few days after me).

But in the dream, her tumor came back. I couldn't say the big T word this morning, when I was trying to tell Paul about my dream. It's still hard to write it, which is an indication of how real this dream seemed.

In the dream, she had a biopsy, which she said was painful. And the tumor was as we'd feared. What was a grade 1 or 2 astrocytoma had recurred as a grade 4 glioblastoma multiforme.

We were in family meetings with Dr. Cousins, her surgeon, discussing how long he could wait before going in and taking it out, with the unspoken thought of since the outcome was pretty much inevitable, could we wait long enough to save the baby?

In my dream, I went downstairs to see my sister as she was being prepped for surgery, and found her with her husband. I was there to say goodbye. She was holding his hand and saying, "We can do this. We can do this." She sounded so confident, I truly believed that she could beat the odds.

I can see where the different pieces of this dream came from: an episode of Grey's Anatomy here, a snippet from an email I wrote just after Ellie's diagnosis (and recently reread) there, our youngest sister's upcoming wedding (Jessica got sick weeks after my wedding).

But all my life, fiction has taught me that dreams are important, prophetic. And so this one's freaking me out. It's almost 6 years later, and I'm still scared that It might come back, and be worse this time.

Thursday, August 10, 2006

Holy Land

I like to think of myself as pretty open-minded when it comes to the many challenging situations in the Middle East. I recognize that there are no simple answers, that there are many sides to every story. Often, I go so far as to consider myself sympathetic, understanding why some people are do horrible things, even if I don't think that anything justifies what's going on.

Recently I took a step deeper and tried to look behind my assumptions.

1) That it's unacceptable to target civilians, especially women and children, in violent conflicts.

Why is that? What I mean is, what an odd sort of society we've developed, where it's more OK to kill certain people (soldiers, government officials) than others. It's a mark of "civilization," and yet, how barbaric an idea it really seems.

This chaplain? He's in the Army, so it's OK to kill him. This woman? She's not carrying a gun so it's unconscionable to kill her.

2) My hope for a peaceable solution with Israel.

This one seems increasingly difficult to imagine. I used to think that it was a matter of drawing borders acceptable to all, but when the two sides seem to boil down to: A) we have a right to exist, and B) You do not have a right to exist in this region, there's very little room for negotiation.

But this is the line of thinking that really brought my closed-mindedness into relief for me.

Jerusalem. I went there in 1994. I walked the stations of the cross, worshipped in a small Christian church on Easter morning, visited many holy places, saw the beautiful gold mosque . . . and watched many people praying at a wall they believe was once part of the holiest of their temples, long ago destroyed.

All sides in the current and past violent conflicts have had a heavy hand in destruction.

But it's very hard for me to consider Jerusalem in a state controlled by Hamas, or Hezbollah, or any other violent, extremist group. And since these groups have such a strong hold on the Middle East today, well . . .

Realizing that really startled me.

But the "international city" plan, floated many times before and most recently by Jon Stewart, sounds . . . so reasonable to me. To me, a person who doesn't live there and has no real personal stake. Perhaps that's the crux of the matter. So many of us, from all over the world, even those of us who have never been to the region, have personal attachments and opinions about their politics and policies and boundaries. I can only imagine how much stronger these attachments and opinions are for people who live there.

Tuesday, August 08, 2006

Even Better than Yesterday

After lunch, or breakfast, or dinner, Ellie comes up to me and says, "Teeth!" tapping her front ones descriptively. So we go into the bathroom and she brushes away. More accurately, she chews on her toothbrush happily, after sucking off all the non-fluoride toothpaste, and repeatedly rinses it to refresh the tasty goodness for more sucking pleasure. I don't know where she gets this oral hygiene fixation; perhaps the toothpaste is a sort of dessert for her.

This morning, she really wanted to play duck duck goose. This is a pretty silly game with only 2 people, but everything with a giggly toddler is surprisingly fun. Even if I was duck, duck, duck, duck, duck, and goose. And she stood still behind me tapping my head the whole time, until it was my turn to reach around and grab her for a laptime tickling fest.

I love this age. I love it. And I love her developing personality and ability to do things for herself. This just gets better all the time.

Ellie, shown here with beloved cousin, of almost exactly the same age. Beloved cousin is on the "up" arc of a bounce, while Ellie is in the trough. She can't really jump on her own yet, but loves this shared experience.

Monday, August 07, 2006

Productive! And Not Just the Coughs.

I worked out tonight, and it felt good. Wahoo! It's been a long time, months perhaps, and I'm glad that I've gotten over the "first time back" barrier. Now hopefully I'll be able to resume a pattern of doing it regularly: I'm no longer nauseous and yet I'm not so ponderously large that it's difficult to move comfortably. This is a nice stage of pregnancy, and I appreciate that I've reached the looking-visibly-pregnant stage earlier this time. Last time at this point, it was still a toss-up whether I looked pregnant or . . . like I'd packed on (more than) a few pounds.

This afternoon, after nap and snack, Ellie and I played Hungry Hungry Hippos. I know, I know. Marbles and choking hazards. I know my kid and I was right there. Anyway, pressing the lever to move the hippo head is nice fine motor control, and practice using a simple tool, which just adds to the appeal of the game for me. After a while, Ellie got a little frustrated with the therapy part and decided to skip the middle man. She used her little fists to scoop up the marbles and dump them directly into her orange hippo's reservoir. Not a bad strategy! She actually won.

Then we played with her Dora Memory cards, but I alter that game a little and leave the cards face up, asking her to match "the same" out of maybe 3 pairs of cards. "Do you see 2 puppies? How about 2 Backpacks?"

When she tired of that, we moved on to The Shoe Game. I made a big pile of the shoes that were in the foyer and tried to convince her to match up pairs. She tired of this game quickly, and lurched off with my crocs over her Stride Rites and orthotics.

So I set up her keyboard and we played computer games for a few minutes until Daddy got home.

This is not at all what I'd planned to write about, but it was a lovely afternoon. This evening had some high points too. I'm almost done with the hardest parts of the anniversary gifts I'm making for our parents this month, and Paul put two solid coats of primer on the hall bath (alternately known as the guest bath, or Ellie's big girl bathroom) and on the wood-paneled wall in the family room. It's so bright and lovely in there right now! And the hideous blue and tan wallpaper and faux Matisses from the bathroom are gone gone gone!

I know that I am nesting. I am so very glad that Paul has decided to humor me. The new curtains and slip cover (for the front room and family room) arrived today. Thank heavens for credit.

Once "we've" finished painting the bathroom, family room and hallway, the next project will have to be Ellie's big girl room. She's started going to what's currently the guest room when I suggest that we adjourn to her room. She already knows that it's going to be her room soon, and I think she thinks she gets to keep the very tall queen bed that's currently in there. Maybe in a few years, sweetie. For now I think the floor space would be better spent in other ways. Like making room for you to Dance Dance Dance!

Finally, the Kirkwood water boil order has lifted. I suspect that this might be the source of my energy and good mood. But I am gulping down the delicious tap water and not looking this gift horse in the mouth.

Sunday, August 06, 2006


Well, Kirkwood certainly isn't Iraq, where the husband of a good friend is headed right now. (Technically, he's en route to Kuwait, then on to Iraq.) For one not-so-small thing, nobody's trying to blow us up.

But that humbling comparison doesn't make me significantly less willing to complain about how utilities have become unreliable around here.

Two weekends ago, we were out of power for a few days while friends were out for 8 days. A significant part of the metro area - 500,000 households - was affected.

Last weekend, power was out again, this time for "only" 24-hours, but just after I'd restocked the frig and freezer, and while the heat index was well over 100.

I have been dealing with a "summer cold" for this entire length of time, which makes me even more irritable than normal. Lately, it's morphed into a horrible nuisance that's taken most of my voice, complete with drainage that makes me feel like I'm choking to death whenever I lie down and sets off periodic violent coughing fits. I refuse to take anything because I hate medicine even more than usual when I'm pregnant.

So you can imagine my delight when, on one of my nearly-hourly bathroom breaks last night, I found almost no water pressure. It gave me something to stress about as I sweated, coughed, choked, and expelled mucus through the rest of the night.

First thing this morning, we learned that we're under a boil order. And then the power went out twice, briefly. Both times were a little nerve-wracking, because these days we never know which are just usual flickers requiring the annoying but mostly-harmless re-setting of the digital answering machine, all the digital clocks(including the stove and microwave), and the computers and related hardware, and which outages will persist. All this under a clear, blue sky when we haven't had any rain in a week.

Guess how willing I am to drink (or wash with) the tap water, even after it's been boiled? Especially while pregnant. Thank heavens for the ready availability of bottled water these days. Though we do need more of that.

Thursday, August 03, 2006

Fun and Games

Well, no luck with the earrings so far.

This morning, Ellie and I went on a playdate and had a good time. All the other mothers were jealous of me, because my child played quietly in one of the host children's bedrooms the whole time, demanding very little. I assured them that it was because of the exciting toys in there (doll stroller, shopping cart, car seat, and playpen) and that behavior is not duplicated for such long stretches of time at home.

After nap, we played quietly around the house because I was still tired. We snuggled up on the couch and I told Ellie a short story about fairy princess Eleanor, preparing her for her role as "flower girl" in Aunt Grace's wedding next month. (She doesn't really have any duties as flower girl, but she will be dressed as an adorable fairy.)

Ellie buried her head in the corner of the couch, then stood up and held up her index finger at me. "Back!" she said, and headed for her room. She returned moments later with some actual books for me to read to her. "Book!" There's one vote against my storytelling prowess!

Later, she found an unopened 9-pack of big girl underpants in her top dresser drawer, which she brought to me for assistance. We were back in pull-ups after an unsuccessful run with big girl underpants earlier in the afternoon. She insisted that I help her pull on a pair of underpants over her pull-ups. Then another pair. And another. We ended up with 4 pairs of underpants over the pull-ups, and she was content. She was even willing to try sitting on the toilet again. (But she still peed in the pull-ups.)

Today was fun and relaxing, but a little sad, too. My Ellie is so beautiful and so smart and so fun and so funny. But watching her in the company of her peers - kids we took Gymboree classes with when they were all infants - was eye-opening too. I used to notice gross and fine motor differences. Some of those are still there, of course, though that gap has narrowed considerable.

But today the language differences were really noticeable. I know how amazingly lucky we are that Ellie seems to have no hearing problems, and that she talks at all. She does talk. She has a very functional vocabulary and every day I am grateful for that and for how much she's learning. But she's just not expressing the complex thoughts, or speaking in sentences the way her same-age playmates are.

I love my little girl as she is. I want her to achieve as much as she can, and I want her to be able to do that in an environment that is fun and supportive, not judgmental and high-pressure. But that doesn't mean I'm not a little sad still when I notice differences like this.

Anyway, today ended with a humbling bang. We were at The Pasta House Company, and Ellie's milk ended up on the floor ("uh oh!" my left foot). I was reaching for it when - Slip! Boom.

Not only did I end up on my bottom on the ground, but then the wooden chair toppled oh-so-slowly, clattering onto the extremely well-waxed floor. It took long enough to draw the attention of many of the patrons and staff at the restaurant, most of whom rushed over to check on me. How embarrassing. I laughed it off; since I didn't fall far, I don't think I'm hurt.

As is the way of these things, I noticed later that my tailbone hurts a little. And my back cracks whenever I square my shoulders. And did I actually hit my elbow? But it's reassuring to sit on the couch and feel New Baby moving around, so I think I'll sign off and just do that for a bit.

Tuesday, August 01, 2006


I went to the mall today with my mom and Ellie. We had fun. I got a dress to wear to my sister's September wedding, and a couple of neat maternity things.

In the process, I lost some very nice earrings that Paul recently bought for me.

It's too late to call tonight, and they don't open until 10:00 tomorrow. Almost certainly, someone vacuumed the changing rooms tonight. And if someone found one or both earrings, chances are that they kept it/them.

Drat drat drat drat drat.