Drug May Counteract Down Syndrome

When I was pregnant with Ellie and looking for a pediatrician, I met Dr. Jan. She was recommended by a co-worker who has a son with Trisomy 21 and a repaired AV Canal defect (like Ellie). Dr. Jan has four children, one of whom also has Down syndrome.

Dr. Jan met with Paul and me for a normal pediatrician interview except that she sat with us for nearly an hour, and said some things that really stuck with me and made me feel so so very much better.

For example, she told me how well-meaning people often tell her about people they meet with Down syndrome, like perhaps the man sweeping the floor at McDonald's, with the idea that they're encouraging her to believe that her daughter too might be a productively employed member of society when she grows up. Dr. Jan let us know that it's OK to feel angry about these comments and about the whole situation, because perhaps I didn't dream of my daughter sweeping floors at McDonald's. She said, "Maybe I dreamed that my daughter might like to be a doctor like me." Yes.

She also said something that I loved but couldn't yet identify with. She said that when her daughter was 2 weeks old, she realized that if she had the ability to "fix" her, to "cure" her, she wouldn't do it. The Down syndrome is just a part of who she is. I waited anxiously to feel that way about Ellie, but I never have.

I love Ellie. I love Ellie as much as any parent loves her child, which is to say that I love her more than I would have thought possible. Isn't that what every new parent says? Well, it's true.

But if there were a safe cure . . .

Wouldn't it be nice for Ellie, to live in a world where her features are no longer associated with a negative cognitive association? Wouldn't it be nice for Ellie not to have to fight so hard to fit in at school and life as she gets older? Wouldn't it be nice . . .

Wouldn't it be nice for me? It would, it would.

Just after Ellie was born, someone sent me a newspaper article about some promising research for a cure for the cognitive effects associated with Trisomy 21. It was expected in 9-10 years, comfortably within Ellie's childhood. I still have the article on my refrigerator.

And in the latest Scientific American, there's more news. I had to wait a couple of days to be ready to read past the headline. When I finally read the article, I was so excited and anxious that I felt like throwing up, or at least jumping up and down.

I won't expose Ellie to a clinical trial. Or a significant risk of seizures or any other dangerous side effects. I love her too much - just as she is. And she is doing so very well.

But if, if, if - if they find a drug that counteracts the cognitive effects of Trisomy 21, Down syndrome, well . . .

I believe that Ellie will still be Ellie, just as sweet and precious, just as perfect to me, even with a drug that makes it easier for her to learn and remember things.

Some day, God willing, she will be able to choose for herself. But until then, I believe that I would chose such a safe treatment for her, if it became available. She would still have disabilities; nothing will change that. But our lives would - perhaps - become a bit easier.

My Thumb

Last Monday, my thumb started to hurt. This wasn't terribly unusual, though it was worse than normal. I pick at my cuticles, and sometimes they get infected. I didn't remember picking at this cuticle, but I barely remember my own phone number these days, so I wasn't concerned.

By bedtime, my entire thumb was angry red and very swollen. It got worse throughout the week. Finally, on Thursday night after Grey's Anatomy, I went to a local ER and had the thumb x-rayed, lanced, and drained.

The next morning, I went to my doctor. He asked me how my finger looked compared to the day before. "This is better?" he said. He lanced it again, in three places. I'm on antibiotics and am soaking my thumb in Epsom salts three times a day, periodically squeezing more pus out.

It's quite gross, and significantly uncomfortable. Also, it hurts to type. (Paul says that normal people don't use their thumbs to type. I use my thumbs a lot.) So. Pictures!

Before.

From 2007-02

After.

From 2007-02

It's still quite disgusting underneath. And, sadly, the really cool big bandage was only for one night. Now I just wear a band-aid or go naked.

Ada Laughed

Today's post was going to be all about Ellie, but instead I want to mention that Ada laughed today.

She's often at her most smiley when she's just falling asleep, and this afternoon was no exception. She had just started dozing on my lap, and I was reading while holding her long enough for her to fall into a deeper sleep so that I could lay her down and go put Ellie down for her nap.

I got to a funny line in my novel, and inadvertently laughed aloud. Eyes still closed, still mostly asleep, Ada laughed back. She did it again later today, overhearing Ellie and I laughing and playing when Ada was waking up from her nap, so I know that it was no fluke.

This little girl, like her big sister, really is tuned into my emotions. Ada laughs when I laugh and cries when I cry.

Ellie does too, but also takes an active role in trying to make sure that everyone is happy all the time, frequently assuring us that she's happy and asking if we are too.

4 weeks

Ada is 4 weeks old today! She has the most amazing toothless grins, especially as she's falling asleep. I love when she cracks her dark blue/grey/hazel eyes open just a little, sees me looking at her, smiles, and closes her eyes again, completely relaxed. Can there be any better feeling than that?

She obliged me by sleeping a lot today, mostly in bed next to me. (Yesterday she took two 2+ hour naps in her crib. That's in the nursery. Across the hall from our room, where she usually sleeps in the bedside co-sleeper.)

I too slept a lot today, and Paul worked from home, doing much of the Ellie care and changing Ada periodically. Fortunately, this seems to have been a very short stomach bug, the best kind. Now that Ellie and I are feeling better, here's hoping that Paul and Ada don't get sick.

Anyway, Ada is already changing so much. Primarily, there's the smiling, but also the fact that she's getting fat! I love it. She was born long and lean and strong, but now she's getting rolls on her thighs, an additional chin, even plumping up her hands and feet. Since I am her sole source of nourishment, I take an enormous sense of satisfaction from this. Her early cries ("Caw!" Like a crow) are growing to include more lovely baby coos. She now loves peekaboo.

She still has her little umbilical cord stump. It's supposed to have fallen off by now, so I'll call the pediatrician later this week. But I'm not too worried because it doesn't seem at all unhealthy or infected. My sister's baby was terribly dehydrated and lost her stump almost immediately. Ada doesn't seem all dehydrated! I think she just wants to hold onto all aspects of womb life for as long as possible.

Despite the fact that Ada is a winter newborn who sometimes sleeps in bed with me and has an older sister who exposes her to all kinds of preschool germs (a cold and stomach bug already), none of those is my primary worry.

In fact, Ada seems so healthy and happy and wonderful, it's hard to worry about her at all.

What I worry about is Ada with Ellie. I think Ada smiled in response to Ellie's voice today. I hope she did. Normally, as Ellie gets too close and reaches for Ada, Ada (not unreasonably) grimaces and flinches, often fussing until Ellie goes away.

Ellie is going to love Ada, strongly and forever. I want Ada to love Ellie too. I want Ada to love Ellie, care for her, protect her, share friends with her, take care of her, be there for her forever. I want her not to resent her big sister, to do all these things for her because she loves her, not because she feels like she has to.

It's a tricky line to walk, as their parent. I need to allow Ada alone time with her friends, and ask her to include Ellie at other times. I need to encourage Ada to do right by her sister, but not instill such a sense of responsibility that she feels resentful.

I love both of my daughters, and I want nothing more than for them to love each other. I look forward to the day when they have a special relationship that doesn't include me, when they start whispering to each other, staying up late and sharing secrets, growing up together.

This is what I worry about, what I hope and pray for.

The First Yuck of 2007

My mom left today, and I had the afternoon alone with the girls. Why not rip the Band-Aid off all at once? Ellie has a stomach bug and is in a resisting sleep phase.

Tonight, the predictable happened: I am similarly stricken.

I wonder if I'll even be able to tell when Ada gets sick. I don't want to get into too much detail here, but it's not like I'm likely to notice a big change. As long as she keeps nursing, we should be OK. I hope I hope I hope I hope.

She's 4 weeks old in a few hours.

Other Writing

I haven't been posting as much lately, and it's not because I've nothing to say. It's not even entirely because of the new baby. It's hard to make time to sit at the computer when we have company in the house, and my mother-in-law was here for more than 2 weeks. My father-in-law was also here for a while, and my mother is currently visiting.

The best marriage and family therapist I've ever worked with (also the only, but that's not to suggest that she's not wonderful) gave Paul and me some creative homework. We've been having a hard time finding time and space to communicate with each other, given our houseful of guests. So our therapist is emailing us discussion-starter questions, for which we use a general template to write our answers. Then we email our responses to each other, and we have general directions for how to read and respond.

This might not be textbook therapy (I have no idea what textbook therapy would look like anyway) but it's certainly serving as a relief valve for my frustrations.

Hearts and Things

Ellie had her annual visit with her cardiologist yesterday, and it went very well. How wonderfully appropriate for Valentine's! She still has the same little valve leakages but nothing new and nothing significant.

She did not want to be at the doctor's office, and the visit started poorly. Then awesome Dr. Sharkey came in wearing a "scary mask" (she has a bad cold). Assessing Ellie's mood (and possibly notes from the nurse and pediatric cardiology fellow who had already tried to examine her) the doctor took Ellie's new sheet of Dora the Explorer stickers away, promising more, and stuck them all over her face mask and Ellie's shirt.

Then she listened to Ellie's heart while asking her questions like, "Who's on my nose? Is it Swiper the Fox?" It totally worked. I totally love that doctor.

As for Valentine's Day, I don't know. I see a package on the counter addressed to me from UMSL-KWMU. From this I surmise that I'm getting something from the For The Love of KWMU local NPR station fund drive from Paul. That's appropriate.

So far, I don't even have a card for anyone. I'm thinking of taking the year off. Since my mother-in-law is here and running the kitchen, I'm even freed from making a festive cake. Or a heart-shaped meatloaf covered in ketchup like last year. A pizza with the pepperoni in the shape of a heart like the year before. Etc.

I put Ada in a red sleeper today and am wearing a red sweater myself. I drove Ellie to school and set out the Valentine's cards she prepared with her Nana. And that's about as much Valentine's spirit as I can muster just now. I think it's plenty.

Oh. Speaking of Nana. That's her in the picture below, holding matching Ada and Ellie. Paul's mom. Not Paul. Though I did appreciate the chuckle.

Braids

Last week, Paul braided Ellie's hair for the first time. This is significant because she, very much unlike me, hates to have her hair brushed or styled. We do quick and ugly princess ponytails most mornings, frequently while pinning her squirming body between our thighs. If I want to do something fancy, like two princess ponytails with straight parts, it's usually a two-adult job. She was in an unusually compliant mood one evening, so Paul made his first daughter hair braiding attempt. Here's the result:

From 2007-02

I don't think I ever told you about the braiding class we took a couple of years ago. Technically, Paul took the class; I was just his model. I didn't want to be the only one who knew how to style our daughters' hair, so we enrolled in a course at a local community college.

All the other students came with plastic heads or cheap wigs on styrofoam models; Paul had me. Since I love to have people play with my hair, it was a lovely morning for me - right up until the part where he wanted me to leave his handiwork in place after we left campus. Then it was just embarrassing.

All the other students were women, of course.

And, at this particular urban campus, all of the other students were also black.

They got a real kick out of Paul's presence in the class, and he got a kick out of the attention and positive feedback. And especially the (presumably joking) salon job offer from the instructor.

Unsurprisingly, the braiding we learned was not exactly the braiding I'd had in mind. Still, I was impressed with Paul's quick aptitude with the "natural strand twist," and also impressed that my hair could hold such a style.

We didn't learn anything particularly useful (we'd have had to go back for the intermediate and advanced classes to be able to actually apply the braiding skills we'd seen in the beginners class). But it was fun. And pretty funny, too.

I'm no good at braiding either. Hopefully Ellie will develop a proficiency at it before her little sister has enough hair to braid.

From 2007-02

Tearful Farewell

Goodbye, sweet Harrison Elizabeth Moss. You were a very special little girl.

All her life, people have called my Eleanor "little Harrison," and I've been proud to have her bear that moniker.

I'm sorry we never got that playdate.

(Blogger picture hoster being uncooperative.)

Ellie also being uncooperative. I keep wanting to hug her and kiss her cheeks, and she is too busy playing. "Bye bye, Mama!"

Hidden Pictures, Unmarked Exits

When left on my own to process, eventually I can come to terms with pretty much anything. I think this is the same skill that makes me a writer, the same skill that I'd be using if I were in politics. It's finding the story, creating the spin, bringing the facts together to make a pretty picture.

Unfortunately, reality sometimes intrudes.

Every time Paul and I hit a really low point, where I'm pretty sure we won't be able to make it, after a couple of days of reflection and waiting on my part, I look up and see the way out of the trough. It's a well-lit, obvious path, and I wonder that I didn't notice it earlier.

Then we try to talk again, and I realize that my pretty pictures, my ladders up out of the low places are fictions created in my mind, the mind that so desperately wants to believe that we can do this, we can fix this, we can continue on - if not as before, well, at least tolerably well. And he never understands what he's doing that's hurting me so.

All About Ada

When Ada was born, Paul tells me that she came out with her eyes wide open, looking around.

She could hold her own head up immediately. When her pediatrician came by to see her the next morning, she pulled Ada up to sit by her arms. Ada kept her head nicely in-line with her body. Already! Not even a day old.

It's almost disturbing the way she has my mother-in-law's long, narrow feet.

Ada's ears look like they're about the same size as Ellie's. Yes, Ellie's ears right now, at age 3.

Ada cluster feeds. By this I mean that she sometimes goes from breast to breast with no more than 10-50 minute breaks in between (if any) . . . for 4 or 5 hours at a time. Then, just when I'm about to fall into a pit of despair that she will never be full, that I'm not producing enough milk, she'll pop right off the breast, smiling and drooling milk, and sleep for 4 or 5 hours. (I'm thinking this might be a "growth spurt.")

Paul says that she has his chin. She has my dad's nose and ears. I take credit for her coloring. Despite all that, somehow, she's really quite cute!

Nothing on earth smells as wonderful as a milky baby.

At every stage of Ellie's life so far, I've said that this is my favorite part. I'm not saying that I've been wrong, but on the other hand, I had forgotten how much fun it is to have a newborn around.

And the baby care is all so very much easier and less stressful this time!

On the other hand, the juxtaposition between what my marriage was last time we had a baby versus what it is now is heartbreaking.

Back to Draft

Post retracted by request.

Instead, I'll say this. Crying is, surprisingly, a good way to deal with the worst head cold I can remember having. For the first time all day, I can breathe through one of my nostrils. And that's something to smile about!