Visions

In my never-ending quest for inspiration on the web. First, earlier this year, my stepmom told me about the Oprah Valentine's Day show that featured the young Down Syndrome couple in love. I finally decided to go looking for 'em on the web.

First I found this article, which made me laugh and cry, because EXACTLY! I have obsessed here and there about sex and Kiki. Okay, that's obviously at least 18 years down the line, but that's my point. It's 18 years down the line! As opposed to -- yeah, right. As if. I love this article.

The one thing that bothered me was when she realized this (which actually occurred to me the very first time I heard of Sujeet and Carrie because I? Am a pessimist):

The fact that these two are married is fodder for Oprah. That means this kind of thing never happens. Shit. It’s a sideshow. Carrie and Sujeet’s happily-ever-after is an aberration. An episode of Oprah; a feature in Time magazine.

I searched on, actually hoping to find the video of Oprah's interview, and found this article on Sepia Mutiny. And they point out in their article -- which, by the way, I note that MOST news articles tend NOT to mention -- that things are continuously on the upswing for people with Downs.

Carrie and Sujeet are the first generation of DS individuals to be healthy and functional enough to consider marrying. They’ve benefited from full social assimilation, new therapies, and close medical attention that mitigates the health complications of DS:

Do you know what that means? Do you know what that means? That means if I stay abreast of all the newest treatments and therapies for Kiki, then she has every chance in the world of being in the next generation of DS adults who are fully socialized and where "high-functioning" won't mean "able to dress herself" but actually "able to function normally."

And finally I found Sujeet's site. Well, actually that link goes to his proposal page. It's incredibly romantic -- I mean, it would be if I didn't have this continuing hangup that the Phantom of the Opera is creepy as hell and not romantic in the least itsy teensy little bit. But I will overlook that for the romanticism of the moment.

I don't overlook things like that for just anybody.

In the meantime, should I be doing other things besides encouraging Kiki to stick her toes in her mouth? (It makes her play with her feet; don't be judgmental.)

Oh! The Screaming

Okay, I confess to a certain amount of smugness that Kiki knows her mommy and prefers being held by her mommy. I admit that even from the beginning, if anyone was holding her when she began to fuss, even if that someone was Kipp and I was supposed to be napping or working 2 rooms away, I'd suddenly be hovering, ready to take the baby and comfort her.

So now maybe it's my fault that she no longer just fusses when she's done being held by someone other than mommy. Because now, even if she's all smiles to begin with, if Kiki knows I'm nearby, and she's being held by someone, after a few minutes or so, she will suddenly scrunch up her cute little face and SCREAAAAAAAAAAM and WAAAAAAAIIIILLLL and yes, even hold her breath.

It's getting bad. Just tonight, I was cuddling her, and needed to get up to do something, so I handed her to Kipp to get some cuddle time. She was all smiles and happy, and he was bouncing her on his chest, and kissing her, just like I do, and he gave her this long smooch on her cheek, and suddenly she just lost it. She did the silent wail thing where she was just holding her breath, and I'm all frantically telling Kipp, "Blow on her! Blow on her!" So he blows in her face, and she catches her breath, and she just screams and screams....

And Mommy scooped her up, and comforted her until she stopped wailing. It was almost like she was in actual physical pain, but we couldn't figure out what it was, and then she just soothed off just fine, so it wasn't a lasting internal pain or anything. I figure Kipp must've poked her with a whisker or something. Or she just got over tired. Or she's so completely a Mommy's girl that she just isn't happy unless I'm holding her.

Which -- can't be good, right? I mean I'm not going to pretend I'm completely flattered beyond measure and all but... I never wanted her to be inconsolably bound to me, you know? I can't believe for a minute that that's healthy. I know right now she's an infant, she can't take care of herself, so it makes sense that her parents would be the center of her little universe, but that position should be a shared one that gets bigger and bigger as she gets older, and suddenly at 4 months, it seems like that center has suddenly shrunk to the size of One Mommy.

So I've been trying to search the web for information about this, but nothing so far. I'll keep looking. I'm sure it's a normal and transitional stage, but in the meantime... I feel guiltier than ever if I'm even out of her eyesight.

In other ways, she's just so utterly -- I don't know a single word for it, but she definitely knows what she wants. When she's tired and wants to be cuddled until she sleeps, she does NOT want to be cradled anymore. She wants to be sitting up. Sometimes, she wants to be propped up in such a way that she can stare at my face and play with my lips and nose, and other times, she wants to lie her back against my chest and stare out at the room. Either way, lately this is the only way she will settle down while being cuddled.

We've been watching LOTR on tv this weekend, and it strikes me was I watch the end (again) how I've always believed the true hero of the whole piece is always Sam, from beginning to end. He's also the most unchanged character, from beginning to end, which makes him slightly booooring.

And everybody laughs too much at the end. Ho ho ho ho ha ha ha ha ho ho... Ya'll are faking it. I can tell a fake laugh ANYWHERE. Goobs. If I were in their place, I'd just want to drink. A LOT. Give me a bed and a keg, dammit.

Sam and Frodo are sooooo special friends, if you know what I mean. It's guy love.

Wouldn't you know it?

So I got all excited about Kiki eating solid food, right? And she's doing fabulously at it, by the way. She's still eating cereal only, and only a tablespoon of it, once a day. I mean, introducing foods this early is meant only as supplemental, not any sort of weaning or anything.

Anyway, so I go out and google baby food recipes, and I find a promising site with lists and lists of foods, from exotic to everyday, and then as I go deeper, it begins to admonish me, harshly, for not waiting until Kiki was 6 months old to introduce solids.

Well, dammit. Can I do nothing right?

I'm monitoring her pretty closely anyway, and she's not reacting badly at all. In fact, I think the newness is intriguing to her. I'm a big fan of keeping her from being bored. And a week later, she's gotten the hang of opening up for each bite, and mushing it around in her mouth, exploring the texture of it. She's even grabbed for the spoon a couple of times, and grabbed some of the mush out of her mouth to play with. A little messy, but exciting to watch.

She's still practicing all her vocalizations. The other day, Kipp "flew" her at me, saying "Here comes Vampire Baby!" and making growling sounds. Kiki evidently took him completely at his word, because now her favorite sound is, "Grrrr! Grrrrrr! GRRRRRRRRR!"

She's starting to explore more with her hands and mouth which means she chews, pinches, and scratches now. All while she's GRRRRRRRing, which makes her a vicious little beastie, all in all.

She seems to have given up on laughing for the most part, at least for now. She still bursts out in happy, all-over-her-face grins, but the actual laugh? Not so much. I know it will come back, though, so I am not obsessing.

Speaking of which. Her blood tests came back normal. Whew! I had these very deep-seated fears her white blood cell count would be up, which could mean -- well, bad things anyway. And luckily all is well, so there's no sense dwelling on it, right? Right!!

And that's all for the week. :) Happy weekend everybody!

The 4-month update

Kiki had her 4-month checkup last week, complete with her second round of shots. The doctor was highly pleased with her progress. I think I mentioned this before -- 50th percentile in weight and 70th percentile in length, on the REGULAR chart! Yay!

I always make a list of things I want to ask the doctor, and then, invariably, I leave it at home. At least this time I remembered to pack a blanket in the diaper bag -- the last time I had a naked baby in a chilly room waiting for the doctor and no way to keep her warm except to hold her close. Which is nice, in and of itself, but she's getting more and more wiggly, and doesn't tolerate the snug holding for very long at all. Of course the blanket I did bring this time? Covered in dog hair. Sheesh.

I remembered most of the questions. Can she start solids? Check and YAY! I think she has sleep apnea -- she sometimes pauses in her breathing when she sleeps. The doctor said if she doesn't stop breathing for 20 seconds then it isn't sleep apnea. Which 20 seconds is a looooong time, people. I don't think I can hold my breath for 20 seconds.

I also asked about her circulation. I've noticed that sometimes when she's held, one of her legs or one of her arms will start turning white. This turns out to be normal. But I've also noticed that at times, her hands and feet start turning blue again. So now we must get a blood test. Kiki was born with a high count of red blood cells, but we were told it would go away. The doctor is less concerned at the moment with her red blood cell count; she wants to make sure her white blood cell count is not also high.

And then she got her shots. Took 'em like a trooper, just like the first time. Only this time, she got a fever, and was fussy through Friday.

So we didn't actually try the cereal experiment until Saturday. I wanted her to feel good her first try. And she did fabulously! It's now 5 days later, and she's really getting the hang of NOT pushing the food out of her mouth the second I put it in there. And she's begun opening her mouth for the next spoonful when she's ready for it.

The doctor suggested trying cereal only for 2 weeks, but I don't think I can wait that long. I think Saturday I will make her some squash -- or yams -- or carrots. Color! I want to feed her color!

Both the doctor and the physical therapist are impressed with the improvement of her muscle tone. She can sit now, if she's propped up. And she'd rather sit up than be cradled, and she lets us know in no uncertain terms.

Poor Kipp. He's been noting that Kiki is a Mommy's girl, and I think he's a little grumpy about it. He kind of just assumed she'd be a Daddy's girl. I tell him that she'll go through stages. Right now, she's an infant, and infants tend to know their moms really well. Once she starts to move around and get more independent, she'll more than likely switch loyalties.

But secretly, I'm pretty smug about it. My baby girl prefers me to ANYBODY! muhahahahahaha!

Heroes

Okay, I've never been a starstruck kind of person. Sure, I occasionally read a gossip rag. Yeah, I get a certain amount of fun out of trash-talking certain celebrities I'm convinced are utter pricks. And yeah, once when I was in my early 20's, I created a scrapbook of Christian Slater clippings.

Through all of it though, I never had a genuine desire to meet any of these people, you know? I'm not a groupie type. I'm just not.

But I've found an actor I'd actually love to meet. For one, I love Dr. Cox. I just do. And I have no problem differentiating an actor from a role, people. I know John C. McGinley is not Dr. Cox. And if it were just his portrayal of Dr. Cox, and his other roles in other movies, I wouldn't be saying this. It's also because he's got a son who has Down syndrome and he's a Positive Landmark. Read this. http://iparenting.com/dad/1002.htm

Yeah I've come up with my own terminology. Finding ways to educate myself about Down syndrome and finding ways to ensure she's growing up with every benefit possible is like wandering aimlessly without a map. I've learned over and over again that there are Positive Landmarks, things that boost my spirits, give me hope, and keep me motivated; and then there are Negative Landmarks, things that crush me, and make want to just have a sit and forget about the trailblazing altogether.

For example. Negative Landmark: A couple of weekends ago we were talking with a couple of friends who work with disabled people. I think they work in an institution of sorts. Anyway, she raved about how loving this one man with Down syndrome was, and how she loved to tickle him and make him giggle. He won't go anywhere without someone taking his hand and leading him there. It was obvious she was extremely fond of him, and she meant to be inspirational, because her point was, he was so full of love and joy, nothing else mattered. But, you know, it does matter. I'm sorry. Maybe it shouldn't. But it does. And also she mentioned a high-functioning girl there who's greatest accomplishment? Dressing herself every day at the age of 14.

And then? Positive Landmark: A German glossy magazine written exclusively by people with Down syndrome. http://www.dw-world.de/dw/article/0,,1423154,00.html?maca=en-rss_english_top-388-rdf

My favorite quote from this article:

While attending genetics conference, she came upon a text about Robin Hood, hand written on one sheet of paper, by a man with Down syndrome. "He had summed up the whole story in a few short sentences. I was fascinated. How he could write so beautifully, so short yet so exciting," de Braganca said. "The writing of (people with Down syndrome) is different. It is short and always to the point, and they have an unusual point of view."

Most new moms are obsessed with their babies; it's natural. It occured to me, as I was writing this entry, that I'm obsessing more about my baby's condition than I am about my baby herself. That's true sometimes -- it's certainly true when I sit down to write.

But moment to moment -- she just amazes me. Her newest thing is to kick her legs up and down so that her Pack n Play shakes. She'll ride the shake, and when it stops, she starts kicking again to get it started. I'm certain she's trying to say "I love you", even though it comes out "Ah ohb oo", it's exactly the right amount of syllables, and exactly the right mouth shapes.

She's so much more interactive than she was a few weeks ago, even. She's reaching for everything, and when she touches things, she squeezes and strokes them. She actually watches the dogs, and looks for them when she's in her bouncy chair. She recognizes our voices, and our touch, and she's developping a definite preference for exactly how warm she likes her bottle.

And she's so beautfiul. The first thing everyone notices about her, besides her head of hair, are her lips. She's got perfectly defined lips that look like a little heart. Kipp calls them her Angelina Jolie lips, although the bottom lip is not quite that full. When she's about to cry, she sticks her lower lip allll the way out.

She's sleeping now. I love watching her sleep almost as much as I love watching her kick and listening to her chatter on and on. She's my perfect little love.

Four Months and Counting

Okay, yes, I dropped off the face of the earth. I'm back.

It's been stressful around here the last few weeks. Don't want to go into any details, especially since there is now a light at the end of the tunnel, and we're pretty sure this time it isn't a train.

Kiki's 4 months old now! I know, I need a 4-month pic of her, which I will take this weekend during her -- TADA!!! -- first solid meal! Yay!!! I cannot WAIT. We're all prepared and everything. Spoons, bowls with lids, cereal. Kipp even went and got some Level 1 fruits and such.

The doctor, though, told me to skip the Level 1's altogether, because they're too runny. Still, I'll feed 'em to her. Not right away... 2 weeks of cereal once a day, then start introducing new foods for 4-5 days at a time.

I explain this to Kipp, who only got 1 container of about 3 different fruits (not to mention an Apple flavored rice cereal in addition to the regular rice cereal), and he gave me a blank look. "You remember," I said, patiently, "slow introductions of food?"

"We never did that with C & B," he replied.

Wow.

I explained we definitely had to with Kiki, since I myself have food allergies. This also took him by surprise. We've been married almost 2 years now, and he didn't know I had food allergies. Well, they're not severe, and it never came up.

Anyway.

She had her 4-month shots yesterday, and the poor thing is miserable and feverish today. We've been giving her infant Tylenol, which is just basically knocking her out, and she hates to sleep this much, but there's not much else we can do for her. Even just cuddling her makes her start fussing and screaming after a little while.

She's 14 pounds and 24 inches now, which puts her at the 70th percentile for length and 50th percentile for weight -- on the regular chart!!! Yay! Again, this child amazes me. She's just bound and determined to be a normal baby. That's my girl!

And bless GoddessKristin who wrote this to me this week: "You know, my aunt is a special education teacher and she told me that a lot of her students with Downs are voracious readers. Since you'd written in your blog that you wondered about Kiki's reading I thought I'd pass that on."

K, you will never know how much you brightened my week with that. :)

OH! I almost forgot to relate this week's cute story. Today, I had Kiki in her bouncy chair, and left the room to get something. When I came back in, Sugar was standing right next to her. Kiki was holding her hand up to her, and staring at her while Sugar licked her hand. Sugar leaned in to kiss her nose, and Kiki started petting the underside of Sugar's chin, then started grabbing at Sugar's tags.

One of those moments where I definitely wished I had a video camera surgically attached to my forehead so I could keep those memories forever.