Bitch and moan, rinse, repeat

You know, I've never pretended to have the sunniest of dispositions, but I never thought I was a whiner. I mean I bitch and moan with the best of 'em, you know, and I can throw a MEAN pity party, but for the most part? I'm a happy camper.

You wouldn't know it by reading my blog, though, would you?

Bah humbug.

I've considered turning a leaf and not blogging unless I'm in a Mary Poppins mood, but those moods are better spent with the people I live with, bless their hearts. Not that those moods are few and far between or anything -- happy camper! HAPPY CAMPER!! -- but, you know, you never know when the well is going to run dry, and when it does, I want them all to remember when I was sweet and pleasant, which may make them hope I'll go back to that, and thus not leave me in a panic.

Hi! My name is Jeannie, and I'm a Happy Camper! (hi Jeannie!)

Okay, okay, really. Enough.

So, news on the Kiki front. Kipp's been teaching all KINDS of new tricks. She now sticks her tongue out and wiggles it. She shakes her head so hard she falls over. And she's back to babbling! And now if you stick your finger near her mouth, she'll yell so you can do the "bluh bluh bluh bluh" sounds against her lips. She LOVES that, and she vocalizes up and down in octaves while you do it until she collapses in giggles.

We're still doing the Your Baby Can Read videos, though not nearly as religiously as I'd like. Confusion has set in on a few points. While we watch the video, when the word "mouth" comes up, I bring her hand up to her mouth to reinforce it. "Mouth". You understand.

Well, this has wreaked havoc with the kiss blowing. I think the combination of learning "mouth" and getting tired of smacking herself in the face so hard (she gave herself a black eye once blowing kisses) has made her cautious. Now when you ask for a kiss, she brings her hand up fast, then slows it down as it reaches her face, then settles all of her fingers right in her mouth, and keeps them there with a little smile. It's like she's teasing you. "You want kisses? Okay, here's a kiss... no, just kidding! I'm keeping it ALL TO MYSELF!"

Her fourth tooth is coming in on top, right next to her Surprise Tooth. Ohh, and if you stick your finger in her mouth (to, you know, dig someting out that shouldn't ought to be there, for example) she'll clamp down, really really lightly, and her eyes will bulge out, and she'll make a Hulk face like she's going to TOWN on your finger. It's kind of alarming until you realize she's barely touching you at all.

And then she laughs. Because everything is funny!

And oh, she loves balloons! It's too bad the dog thinks they're alien invaders and won't stop skulking and growling when it's in sight.

No new pics. I mean, I have them but haven't had time to get 'em off the camera. *sigh* Soon! No, really. Okay, kind of soon. Maybe.

Oh no Toto!

Okay, my boss gets back from a week's vacation and I'm right back up to my butt in work. So much for my weekend... but it's good pay, so I'll shut up now.

Had to take a moment and chronicle this one though.

Tornados hit the area this afternoon. Bri was out at a friend's house; Chris had a friend visiting here; I had just gotten Kiki to sleep for a nap in her crib upstairs (I've been working upstairs). Well, Chris's friend's grandma shows up to let me know there's a touchdown in a town nearby and to gather up her grandson. I gather up the baby, my computer, and Chris, and head on downstairs -- we have no basement, but I know enough to be on the ground level.

Before I could panic about whether or not or HOW I'd go and pick up Bri, her friend's mom dropped her off on our doorstep. Evidently it is midwestern protocol to gather up the chicks when a tornado is imminent. I figured you just left 'em where they were and hoped for the best. Who knew?

Anyway, Chris does not handle storms well. Thunderstorm are bad enough, but if the rain is loud enough to audible, he even starts getting anxious. Add on to this a sudden hailstorm and an imminent tornado, and the boy was shaking.

Bri suggested I get their mom on the phone to talk to him. He curled up under a blanket on the floor, talking on the phone with her, and Bri suggested we build a fort. So we gathered some chairs, blankets, and pillows and built ourselves a pretty nice little fort. The four of us gathered in, and Kiki started trying to climb the bundle of blanket that was Chris, which caused him to peek out of his blanket, note that he was still covered. So he sat up, and the four of us spent a couple of hours sitting cross-legged in a circle, eating popisciles and Doritos and talking about Pokemon.

Well, Kiki didn't add much to the conversation other than a growl here or there when prompted, but she swiped the popsicle out of her brother's hand and kept trying to steal his toys. Now either she adores the heck out of Chris -- she sits and stares at him, then cocks her head and smiles -- or she's already decided she's going to bully him as much as Bri does. In any case, her attention was 100% on Chris the entire afternoon, no matter what he was doing.

So for those of you who worried, no worries. We are safe, we are sound, we are damage-free. We even had some fun!

And now... I head back to work.

And Now For Something Completely Different

I jest. It's the same old.

So took Kiki in to the ear, nose & throat specialist today. He examined her for all of 3 minutes (well, and studied her chart and all her hearing tests, so you know. I'm premenstrual and moody, which makes me all dramatic and grumpy.) before scheduling her for surgery.

I did not cry. There was this distinct burning sensation behind my eyes for a few minutes while I waited in the cashier line after the visit, but after about 30 seconds of waiting, I got so irritated that the burning simply went away.

I mean... okay, I knew it was going to come to this. And I also know that we are so incredibly lucky and so incredibly blessed that Kiki doesn't have any life-threatening health issues, like heart defects or weak lungs, and so I don't want to be all whiny about this, this very, very common procedure that so very many kids (not just T21 kids) end up having.

But on the other hand, anesthesia. Anesthesia. They are going to take my baby out of my arms, take her away from me into a sterile room, lay her on a table, drug her unconscious, and then cut into her. And then when they are done, they are going to take her to another sterile room for up to 4 hours, while they monitor her recovery from the anesthesia.

The reality of this, as you may note, is beginning to kind of sink in.

Worse yet, because her EN&T guy is at a different hospital than her eye doc, we may not be able to schedule both procedures for the same time. Anyway I'm calling her eye doc tomorrow. He may not even want to do the eye surgery as soon as the EN&T guy wants to do the tube surgery. The eye guy is very cautious. In fact, we're not even scheduled to see him again until August, when he'll see if the eyepatch 2hours a day has made enough of a difference that she may not even need eye surgery at all.

I feel like I'm juggling. One bout of anesthesia sounds INFINITELY better than two bouts of anesthesia, but having a surgery too soon or even a potentially unnecessary surgery sounds infinitely worse.

Four hours I will have to wait for my baby after surgery. I think they may have to sedate ME.

Okay, whining over.

Let the grumbling now begin.

I had surgery once. I had anesthesia. I don't remember the surgery (duh) but lord almighty I remember it taking 3 days to fully recover from the anesthesia. Okay, there was pain, too, but the anesthesia. And then every time I've taken a pet in to get fixed, they've always been pukey from the anesthesia. Note how I'm focussing on the nausea post-anesthesia and dutifully ignoring the whole anesthesia-can-kill-you-if-they-dose-you-wrong-or-you-choke-or-you-have-a-bad-reaction thing.

I know, I know. I'm a freaking drama queen.

I need a beer.

New Stuff

1. Tooth Number 3 discovered by accident as Mommy was checking out Teeth 1 and 2. Ow! It's popped in on top, and it's the first one that Mommy didn't track the progress of obsessively. We'll call that tooth the Surprise Tooth.

2. We put an empty diaper box in front of Daddy's computer to keep Kiki away from his coveted earphones. She wants those earphones SO BAD that she pulls herself up into a standing position just so she can stretch across it as far as she can. It's the only thing that she'll pull herself into a stand on.

3. Today during her second session of Your Baby Can Read, she started clapping when the word "clap" appeared on screen.

4. And she's babbling a little bit again. Generally when she wants something because she knows I'll respond to a babble. Sly little booger.

5. Put in is getting there... sure it's still slightly more accidental than not, but she's getting more directional. It's progress!

And I leave you with a kiss.

Make an on-line slideshow at www.OneTrueMedia.com

Frustrations of Motherhood

I've known this woman for about a year. We run into each other on occasion at parties of mutual friends and whatnot. At one point we got to talking about our kids, and she disclosed her son is autistic when I disclosed that Kiki has DS.

I ran into her again this last weekend, and we started talking again. Her son is school age, while Kiki is only a year old. Even with the age difference though, I'd have to say that I can't imagine what she goes through as the mother of an autistic child. She warns me that I'll have some of the same problems when Kiki is school age -- teachers who won't want to deal, kids who isolate and mock -- and I'm sure she's right. But right now, it's hard to imagine. Hard to grasp. And I still think she has it harder.

Kipp I think nailed it last night when we talked about it. What little I know about autism -- Kipp has more experience; his ex worked with autistic children and often included them in family holidays -- I'm aware that they have difficulty connecting, interacting with others. And this is why it's hard for me to even think of myself as the parent of a child with a disability. I'm aware that Kiki has a learning disability, believe me, but it seems so inconsequential compared to how engaging she is, how social and fun and funny she is.

And some things she just picks up and keeps. She has this growl she does, which was her first noise and her preferred noise, and we've learned to work it into context. Every time she did it, we started saying, "Kiki, what does a lion say?" And now, when you say, "Kiki, what does a lion say?" she growls on cue.

But other things. The babbling for example. For months now we've gone through this cycle where she'll babble incessantly for about three days straight. We'll reinforce it constantly, babbling to her, even to the point where she would babble on cue back to us, ba-ba-ba and ma-ma-ma and da-da-da, all of them.

Then one day she will wake up and -- just not do it anymore. And we have to start all over from scratch, as if she'd never learned it before, starting with ba-ba-ba, painstakingly for weeks until she's back where she was for those three days before.

And yes, it's happened again. Her babbling, after three days of absolute mastery, completely ceased on Tuesday or thereabouts. Today she's started hesitantly, almost accidentally, started ba-ba. So at least the stretches of time between amnesiac bouts seems to be lessening, but.

It's frustrating. And I am not a patient woman. And I'm a control freak.

I told Kiki today while we were playing, "I hope God had YOUR best interests in mind when He gave you to me. He certainly had my best interests in mind, at any rate."

And it's true. Like I say, I'm not a patient woman and I am a control freak. But if you were to compare me now to what I was a year ago? I'm not going to say anything drastic like "night and day" or anything, but there is a profound difference.

Um, I hope anyway (as I catch myself yelling at Bri to close the door behind her. Does she live in a barn?)

More Health

Again, behind. I go to these doctors then put 'em behind me. Check, check, check.

Anywho, saw the eye doc again last week (heh... saw the eye... never mind.) We'll be back again in two months. In the meantime, we're putting a patch over her left eye (the good one) for two hours a day. Hopefully that will make an improvement without surgery, but the doc seems pretty sure that surgery will be necessary.

On Monday we see the ear nose & throat specialist. Hopefully he will be able to see her eardrums and ascertain if there is truly fluid behind her ears. If so, and tubes are necessary, the eye doc told me to tell him to coordinate with him, so that the eye surgery and tubes can happen at one time, with need for only one bout of anesthesia.

Her ST came today and was wholly impressed by her blooming social skills. She suggested that we take advantage of her newfound prowess to mimic motions by pressing the signs on her. We're trying... so far she claps for more when she's eating and throws her arms up for all done. Of course, she also claps for Yay! and throws her arms up for Arms Up! And the blowing kisses thing could also be used to communicate Food, but I'm not sure how to put that into context for her.

Contextually though, she does seem to be grasping the mealtime signs, as opposed to their meaning when she's not in the high chair. I'm trying to get her to sign for her milk instead of whining when she wants it. This however is my fault... I've reinforced the whining by giving her the cup when she does it. It's just instinctual! I know she wants it! But it doesn't help her, soooo. *sigh*

That's all the news on the homefront so far. My week off is almost over and I haven't done a bit of catch-up laundry. Again. *sigh*

Tomorrow! Umm, maybe.

Changes

I was in the mood for a template change. So I went out and found one I loved, figured I could customize it and whatnot, and completely underestimated 1) how Blogger unique type tags and whatnot are completely unknown to me and 2) how much I'd forgotten about HTML, CSS and all that in the last two or three years.

Ah well.

Several panic and anxiety attacks later, I think I'm okay with the result. Not REALL okay, but okay. I actually have another feature I want to add, but I have to build the content for it first.

I'm probably going to scrap it all and start over again within days. It always happens. (sigh)

Let's see, news on the home front. The schizo dog who is afraid of windows, curtains, stepladders, iced up grass, and bridges is also afraid of -- tada! -- bubbles. We bought bubbles thinking we could teach Kiki to blow. This wasn't exactly a great idea. If we get the wand anywhere within reach she tries to grab for it with either her hands or her mouth.

However, after days of us blowing in her face, she's begun to try to blow back in defense, I think. She kind of starts off in a raspberry and ends up sort of blowing. As with everything she does, it's sooo damned cute we get the giggles when she does it.

She loves it when we blow bubbles at her though. So we do this as often as possible, while the brave dog sits by Kiki and eats the bubbles that get close enough, and the other dog cowers in a corner, as far away as possible.

She blows kisses now, but it's kind of... unaimed. She starts with her mouth, but generally gets distracted in the middle of a string of blown kisses and starts smacking her ear, her forehead, her eye. She's actually given herself a black eye from the fervor of her blown kisses. I have video, which of course is not processed so I can't share it.

Yesterday, I caught her trying to do Itsy Bitsy Spider by herself! She loves Itsy Bitsy Spider.

She puts her arms up and then down on cue. She waves and blows kisses when prompted. And Kipp is now teaching her to do the Vogue.

And she started babbling! And she's continued babbling! Yay! And I have it on video also! Which I don't have ready to share.

I find myself strangely lacking in more things to share.

And since it's midnight....

here at least...

HAPPY BIRTHDAY, DESSA!!!

According to our doctor's office, you are officially no longer a baby.

You make sure and tell your mommy that!

And enjoy your cake and your gifts and know that we're thinking of you and we all love you and send you great big hugs and kisses!!!!

Heart, Check

I'm such a space case. Forgot to update on the checkup yesterday with the cardiologist.

First, a backstory. When Kiki was born, she had a little hole in her heart. Well, I suppose little is relative. I mean when you're 7 pounds, how little can little be?

I digress (as always).

Anyway, 12 days after she was born, which would have been 7 days after we took her home from the NICU, Mom and I took her in to see the cardiologist to see how dire the little hole might be. I do not know if this is the standard case in a pediatric cardiology office -- and it may be, and I'm just ignorant -- but we spent the majority of our time there waiting. The first wait, in the main waiting room, was the shortest. The two subsequent waits in a colorless little room with a desk and high high walls were unbearable.

Anyway, I'm there with my Mom, bless her heart, and I remember vaguely that she remarked that he had the bedside manner of House, and this was probably just after he made me cry and just before he told me that Kiki's heart was A-Ok, and that we really dodged that heart defect bullet there, by gum.

I want to point out thought I don't dislike him. I think he's okay. I'm actually quite ambivalent about how I feel about him, except to say he seems to be a very good cardiologist. Thorough, and conscientious. I've never seen House. Is House also thorough and conscientious?

In his defense at the time I was sleep-deprived, post-partum, a brand-new mom, and scared to freaking death at the possibly fragility of my newborn sweetheart who I was still afraid I would never love enough.

I was a mess.

This is how he made me cry. He came in after we had waited and waited and waited after she had had an echo and an EKG. He sat down. He shuffled papers. He read things. He did these things in absolute silence. Then he began firing off questions that I don't remember but quite honestly but felt somehow accusatory and dire, like he was hinting that I was a horrid mother who would no doubt end up killing her child if the child didn't first die of whatever it was he was hinting she might have.

And then he said, "Well, you don't have anything to worry about because her heart is perfectly fine." and then, "Oh, I'll see you in a year to make sure that nothing crops up between now and then."

You know, I can't possibly write it up well enough to defend my crying. Okay, I'll admit it, I was just emotional. It happens.

ANYWAY, I took Kiki in for her follow-up yesterday BY MYSELF. Again the waiting and the waiting. And this time no adult company, just a little girl who does NOT want to sit still for long. Or for EKGs or echoes.

Luckily I had brought toys. Luckily, most of our waiting was in a room by ourselves. Luckily I have long since gotten over just plopping her down on the floor wherever we are and handing her things to bang together, which she does quite happily, until she gets bored and creeps off to find magazines to tear up (she carried a magazine insert with her to the echo, and played with it during the procedure because next to washcloths, the child lurves paper.)

I did not cry this time. I was kind of irked at the wait, but also kind of amused. I think he tries to agitate people. Which is odd for a cardiologist, you know? Or is that ironic? Whatever.

So anyway, according to her readings on the echo, she's either got the mildest case of stenosis in medical history OR she was just irate during the procedure. I corrected him before he could get full into his schpiel because I am just that stupid. "She wasn't irritable," I said, "she just doesn't lie still unless she's sleeping. Not even then, most of the time." (Mind you HE was not in the room when the echo was given. He was just assuming.)

Stern look. Throat clear. Begin again. Mildest form of stenosis in medical history -- pause for emphasis, stern look -- or the readings are inaccurate, and in either case, it won't affect her and he would't recommend any correction anyway, so clean bill of health.

"Okay," I said, "thank you."

Pause. Another look. "We get these types of readings all the time," he said, "because younger ones get so irate during the echo."

Gaaaaah. "She's very mobile," I corrected him, and Kiki blew him a raspberry for emphasis.

Guess what he did? HE REPEATED IT ALL AGAIN FROM THE BEGINNING.

But anyway, the point is, clean bill of health, heart okay. But she still only weighs 20 pounds, in a wet diaper and right after breakfast (don't look at me that way, we had just got out of the car, and I hadn't had a chance to change her. I changed her in his office later.)

It's not like I'm not trying to fatten her up, either. You should see what I put in that child's mouth. *sigh*

Oh! It's a tv!

So Your Baby Can Read arrived day before last, and quite dutifully, we set about putting it into action.

Kipp was just as excited about this program as I was, so much so that he got to watch the first video with Kiki first. Well, okay, first we read the instructions (which is rare for us, so I am proud), and we're supposed to show her the first video twice a day for a month.

Now the first thing is that it warns you not to get your kid hooked on junk tv, or else their attention span is forever shot (I may be slightly exaggerating.) This was a concern, of course, due to Mommy's daily diet of Nickleodeon -- I mean, baby's daily diet -- oh, we're not fooling anybody here. The tv is always on. It is background noise. We don't pay it any attention. And neither does Kiki.

Hence our first problem. How do we get her to watch tv? You may be snickering over there on the other side of this screen, but I'm serious. She's never had ANY interest in tv, and it's always on.

This is what we decided to do. We take her into her room, where she's not used to having a tv on. We take the little tv that's in there and put it on the floor. This way, she's right eye level with it, and she can get up close and personal.

It works like a champ. She sat and watched it all the first time, dancing during the songs, waving when they waved, clapping when they clapped, all of that. She made it about 3/4 of the way through the second time. She just can't sit still long enough!!!

However, I'm still counting it a success in progress, though, because it does engage her and fascinates her, and she does interact with it.

Speaking of tv, we'd recorded So You Think You Can Dance and finally watched it last night. Kipp loves these reality things. I mock them long and loud, but I watch 'em too.

Well, out of nowhere last night comes Brett Branford.



We watched in silence. Then we turned to look at each other. We both had tears in our eyes.

Okay, now, he's not a professional dancer. I'd say he dances better than I do, which is true, but that is so not hard to do, and totally undersells how well he actually dances. And speaks. And represents.

What I appreciated was that they respected why he was there, that they let him perform, they let him speak, they treated him with dignity. Unlike, for example, the averagely-chromosomed woman who auditioned some time after him, who they TORE APART because honestly, I can dance better than she can. And did I mention? I can't dance?

I was a little conflicted at first, because they treated her differently than they treated him, but then it dawned on me 2 things: one, he dances better than she does (in fact, his audition was better than a LOT of auditions I've seen so far), and two, he came with a message. She came with... um, I think nothing, really.

And he was cute. I am nothing if not totally shallow. I looked at Kiki, who was eating while we were watching this, and told her, "Honey, if you ever want to marry somebody that cute? I am totally, 100% behind you!"

Because obviously looks are everything.

Here's the thing that makes me feel a little bit dirty. I actually think he's a bit hot. Well, hell, while we're confessing, we might as well 'fess it all. I think he's hot. There. I said it.

This is... but should be I suppose... but is kind of odd. A little over a year ago, I was the blissfully ignorant bigot who while was nothing but nice to anybody I might meet with Downs, still belief that a) they were all happy and lovey and b) they all looked alike.

A couple of months ago, it occurred to me that all of the babies I've met or seen pictures of this year, all of them, even the ones with Downs, have all been beautiful. Okay, okay, I'm trying to convey something here, but it won't work without honesty so, okay. I've seen some ugly babies this year, too, BUT -- and this part IS the truth -- none of them were babies who have Downs.

I mentioned this to Kipp, that I thought perhaps my perceptions were changing, changing because of Kiki. I thought perhaps that those perceptions would continue to change, that I would continue to evolve, as Kiki grows up, and those perceptions will be extended to adults as well. That probably sounds weird, but I don't know how else to describe it.

In any event, while it is dirty, I am quite happy and proud of myself that my first reaction to this young man on So You Think You Can Dance was, "Hey, he's hot."

I'm evolving into a dirty old woman, but at least I'm evolving.

You know another good looking kid I've seen recently? The guy who played Pheobe's boyfriend in the Lifetime made-for-tv movie adaptation of The Memory-Keeper's Daughter. Also a hottie. No lie.

Ohmygod, and also? I was not able to find a photo of this actor online. I actually found a pic of KIKI via Google while searching images for "Memory Keeper's Daughter", but not a thing on him. I am NOT KIDDING.

Here's to reading!!

Yay!! I'm so excited! Mom ordered Your Baby Can Read for Kiki, and it'll be here in about a week!

And here's the Inspirational Video for June (yeah, I'm early, but it was timely!)

Dog Dreams

We have two dogs, both of whom sleep in the same room with us at night, but in their own beds. Kipp would prefer if at least HIS dog got to sleep on our bed with us, but let's be practical. Kipp and I fight for bed real estate throughout the night. Add a dog or two? I like to sleep at night when I go to bed. Call me old-fashioned.

Anyway, somewhere in the netherworld between daydreaming and actual dreaming last night, I had this dream/fantasy/whatever where someone was threatening us harm in some fashion or another, and I blurted out, "Oh yeah? Well, if anything happens to either one of us, our dogs will FIND you and exact VENGEANCE."

This is hilarious enough as it stands because we have one dog whose idea of threatening actions is to whimper, crouch, and pee uncontrollably; and the other dog would only attack a person if they were dressed as a window, bridge, stepping stool, or -- we suspect -- a clown.

So the sheer absurdity of the statement made me chuckle myself awake, whereupon I could hear one of the dogs making noises that indicated she was having a very intense dream.

I immediately felt horrible and responsible, like my own bad dream mojo had invaded her head space and influenced her to dream badly. I tried to shift over into happy thoughts, trying to send happy dog dreams her way, and then I thought, "What exactly does a happy dog dream entail, anyway?"

I mean a typical day for the poor uncontrollable pee-er that was dreaming is a combination of being mauled by the other dog and being mauled by the baby. On occasion she gets a quiet moment, curled up as close to me as possible, until a dog or baby pounces on her or I push her away because I'm getting up.

I imagine bliss for this dog would be dreaming that the other dog and the baby are caged up, and she's on the outside, laughing at them while she has full access to all the food and Mom she wants.

I fell asleep before that dawned on me though. Poor thing.

Checkup Catch Up

Last Thursday, I took Kiki in for her 3rd -- count 'em!! -- hearing test. Maybe 4th. Yeah, 4th. There were 2 in the NICU just after she was born, then the more in-depth one where we had to get her up at the crack of God, starve her, keep her awake, and then feed and rock her to sleep for the test itself.

Remembering the last one, I called a week before, a little nervous, to find out if we'd have to do that same thing. Dreading the answer because, well, Kiki at 3 months old wasn't difficult to feed/rock to sleep. Kiki at 13 months? Shyeah. Riiiight. It ain't gonna happen.

Luckily, there was none of that monkey business. Since she's older and can visibly respond to sound, it's a lot closer to an adult hearing test than the previous one was.

So the nice lady checked her ears. Can't see her eardrums! Yah, I know, I know. Pressure test -- no arc! That means the eardrum isn't vibrating which probably means fluid behind the eardrum! Yes, I've heard this one before. Or -- how's this one for shits and grins -- because her ear canals are sooooo tiny, any reading you get is going to be completely dependent on how close your instruments can get to her eardrum which is --- NOT CLOSE AT ALL! Woot! Give the lady a kewpie doll!

Do I sound bitter? I'm not. I've just heard this before, you know? And it's my fault. I keep harassing her doctor about another hearing test, another hearing test, blah blah blah, nodding patiently when she expresses the words "CANNOT. SEE. EARDRUMS. EARS. TOO. SMALL," before renewing the nagging.

Okay, anyway, back to the hearing test, of which she said they couldn't really test anything, due to the result of the first test which was -- nil. What she could do, and did do, was put Kiki and me in a soundproof booth, sitting at a window facing her, speakers to both sides and to the front of us. And then she spoke to Kiki, loudly and then softly, and waited for Kiki to look in the direction of the sound, at which time she cued a little dancing Eeyore or Tweetie Bird to kick up.

I couldn't see Kiki's face, so I don't know how impressed she was by this. I wasn't too heartened by this testing environment and here's why: Kiki is a goober. She can hear, and sometimes she'll respond to your voice, IF she FEELS like it.

Case in point. Tonight, Kiki was sitting playing with one of her toys, her back to us. We called to her; she didn't respond. We called her name. We whistled. We snapped. No response to ANYTHING. We call her name and clap softly at the same time. She does not turn around, but she drops her toy, claps her hands, then picks the toy back up and resumes where she left off. See? She is a BRAT.

So I was fully prepared for a failed test. Luckily she sort of passed. She obviously responded to the louder voices, but didn't respond at all to whispers. Likely diagnosis: hearing loss, hopefully temporary due to fluid in her ears. Suggested course of treatment: appointment with ear, nose, and throat specialist. Ahhh, now we enter the realm of possible tubes in her ears, surgery to remove her adenoids and tonsils down the road... but as always, I look too far ahead.

Fast forward -- backward -- whatever -- to followup with her primary doctor yesterday. By the way I love her doctor. And every doctor or medical professional we've bumped into along the way knows her name and sings her praises. This is a FANTASTIC doctor. I love her, and I thank God for putting her in the nursery on the day Kiki was born, and for sending her to my room to introduce herself. And also thanks to me for having the presence of mind to snatch her up quickly at that moment -- "Where do you treat? Nixa? Really? Are you taking new patients? Can I have your card? When can I see you again?" I don't think I had really slept yet when I first met her, so I was just on the edge of the Sleep Deprived New Mother Pool, toes touching the water, about to dive in, otherwise I may have asked her her sign, favorite color, and whether she was single, and if not that was okay, I could be discreet.

Anyway, yesterday, doctor. Right. Her face lights up when she sees Kiki, and they flirt with one another. This is one reason I love her. She obviously cares for my baby, personally, not just as a doctor. She mentions that Kiki's dropping on the weight curve, but she's so excited to see her so active and curious, that she doesn't care, she's not at all alarmed. And when I mention the fluid in her ears and the hearing test, she remembers to remind me, "SMALL. EAR. CANALS." but sets us up for an ear, nose, and throat specialist, agreeing that it's time to get aggressive about these teeny little leprechaun ears.

Kiki waves good-bye and then cocks her head, which are two of her new tricks. She grins and claps. She's a performer, like her Daddy, and she's learned that she loves the spotlight.

Happy Baby!

You know, she's like a big ray of sunshine. You can't watch her and not smile or giggle or laugh. Don't get me wrong; she has her moods. In fact I suspect she may end up as moody as her mom, and if she does, that's her mom's fault for modelling that shit.

So yeah, she's grumpy sometimes when she's not getting what she wants, or if she's tired, or if she's not feeling well.

But otherwise she's so gleeful. Glee is the perfect word for it. When she claps her hands or waves, her eyes open wide and twinkle, she grins like a maniac, and her whole body wiggles with absolute, sheer glee.

And now she's figuring out how to get around barricades, and not just over them. Good lord she's a smart girl.

So she had another hearing test today. Still can't see her eardrums because of those tiny ear canals. The timpanum indicates there's fluid behind her ears, which is probably causing a temporary hearing loss. She reacts to loud noises and voices, but can't hear soft voices and whispers.

So the next stop is her primary care physician to discuss sending her to an ear, nose and throat specialist. There's a possibility she may need tubes in her ears, but this isn't uncommon amongst children her age, surprisingly.

And that's the update this week! I finished the book and it was glorious. It had a beautiful, upbeat, spiritual ending. I cried. Of course I cried. I cried, and Kipp looked up from his book all concerned, and I sputtered, "He said I love you! He said I love you!"

I sniffle now just thinking of it.

Reading reading reading

I'm reading Roadmap to Holland by Jennfier Graf Gronenberg. Oh my God. This is the best book I have ever read. To say that I relate in too many ways to this book is an understatement, so I fear my fondness for it may be ever so slightly narcissistic. Still -- the prose is so lush, and the emotion and detail so amazing and raw. It awes me.

Some of the things she's able to convert to prose are things I've struggled with and haven't been able to express myself. I've read what other mothers have said about her book, and it seems to be a consistent comment that she's almost like a mouthpiece for our collective souls.

That sounds sappy, but oh well.

I won't even attempt to list out all the things in her book so far (I'm not even halfway through!) that have spoken to me, but the most recent thing I read is still stuck in my head.

Where I'm at, she is obsessed with looking at photos of children with Down syndrome. I can relate to this; I still sometimes spend hours cruising through the Down syndrome sites and parents' blogs, looking at photo after photo.

She writes about how her mother's first visit after her twins are born. (Quick recap: her second pregnancy, she has twin boys. One of the boys has Down syndrome.) Her mother takes pictures of the house, the kids, the family while she is visiting, and then when she has them developped, she sends them to her (the author).

The writer/author/mother pauses on the last photograph, which is of Avery, her son with Down syndrome. She says the photo makes him look bad, retarded. She tears up the photo and throws it away.

Please direct your attention to the right, to the photo of Kiki at 10 months old. Notice that she looks every bit a DS baby in this photo. I agonized about whether or not to post that photo. I agonized about whether or not to send that photo to friends and family.

There were other photos since she was born, occasional photos that starkly showed her DS features, pictures that made me cringe. I kept them. I kept them all. I don't honestly recall whether or not I ever shared them, but I have them.

The urge to throw them away though was palpable. If they were paper, in my hand, I would have torn them up. But they weren't; they were digital, sitting on my computer, fragile enough to disappear without a trace with a single click. Somehow I think that made them less real, less threatening.

In the end I think it was about trying to accept every facet of my baby. I allow myself denial in so many other arenas that perhaps I felt deep down that I had to curb it in somewhere, somehow.

I was actually proud of myself for finally putting that photo of her up. My baby is generally beautifully photogenic, unlike her mother, but like everything in life, there are always exceptions. And sometimes, it doesn't hurt to keep a bad photo.

Superbaby!

Since this last weekend she's started:

1. Blowing raspberries at us when we blow raspberries at her
2. Dancing if we dance first
3. Clapping her hands together WITHOUT TOYS!!!
4. Cocking her head from side to side to mimic us doing the same thing
5. Making kissy faces at us when we make kissy faces at her
6. Playing peek-a-boo

Honestly, it's like she'll go so many frustrating weeks without seeming like she's making any progress and then BOOM! She'll pull out the bag of tricks and show us what she's stored up.

Now, cynically, I realize that most of that list is really just one milestone -- that she's begun to mimic what we do. I don't care!! I'm giddy!

She's begun to wean off her morning nap which is good and bad... she's grumpy as all get out by lunchtime, but she sleeps great in the afternoon and still sleeps soundly through the night.

I don't think she's feeling very well today. She had a slight cough this morning, and she wasn't interested in eating breakfast, but she powered down two cups of milk which is unusual -- she usually only wants half a cup in the morning.

Her ST will be arriving shortly and Kiki is fussy already... this will be fun.

Weekend in Review

Starting backwards... Sunday night. I'm beginnng to view Survivor like presidential elections. Nobody I want to win ever does; and in point of fact, the ones I want least to win always do. Every year I say I will NEVER watch this show again if so-and-so wins; then so-and-so wins; and the next season I'm watching the damned show AGAIN. It's definitely a love/hate thing.

At the moment, Kiki is playing with an empty 2-liter soda bottle. It rolls away and she crawls after it. I think this is a good thing, don't you?

Mother's Day was wonderful. As usual, I put off shopping for cards to the very last minute so nothing got mailed off. You'd think I'm allergic to the post office or something. But I did make phone calls, and it was soo wonderful to hear everyone's voices. I haven't seen my Dad and MamaB in three years now; I miss them so much. I can't tell you how many weekends I wished I was only a 2-hours drive away from the cabin in the woods.... *sigh*

The last time I saw Mom was last year just after Kiki was born. She and JP are planning a visit soon, in the summer. I can't wait!!

So when Kiki got her chicken pox and MMR shots a week and a half ago (or so), the doctor warned us that she'd likely break out in bumps or a rash right on Mother's Day. She broke out a few days earlier than that, actually, and developped -- ta da! -- thrush on top of it. She's never had thrush before, and evidently it is not common for a 1-year-old to have thrush just out of the blue.

What I'm thinking is that the shots affected her immune system. It happened before, when she had her 6-month shots, that her immune system got thrown out of whack -- that time we ended up in Kansas City at an oncologist's office, ruling out leukemia. At least thrush doesn't require a trip to KC... just medicine 4x a day. She's responding well too... the white spots on her tongue are all gone now.

She still only has one tooth. The one right next to it keeps on threatening to poke through, but it remains stubborn.

And she's clapping! Well, as long as she has something in her hands. At mealtimes, she'll grab up two fistfuls of food and bang her fists together. I'm counting that!!

Big Girl

I am now addicted to big girl pajamas. Not for me, not as in Big Girl; but for Kiki as in not sleepers.

She now has ballerina pjs, Disney Princesses pjs (that she got for her birthday), and Spongebob Squarepants pjs (which came with 2 tops!)

Kiki herself doesn't seem to care what she's wearing, but as long as Mama's happy, everybody's happy.

Kiki started sleeping in her crib in her own room when she was 6 months old, so about 6 months ago (give or take). I'm not sure when I started her bedtime routine as it stands today, but it's become timeless in an odd way, as if we've always done this, and always will.

She's not much of a cuddler during the day. She wants to go, go, go all the time, and time spent in someone's lap means lost time that could be spent trying to climb into the entertainment center or behind Daddy's computer where he hides his coveted earphones.

But at night, just before bedtime, if I'm sitting in the rocker, she settles in (usually -- there are always exceptions), and gazes intently up at me while I sing to her. I sing the same songs every night, in the same order. I sing "My Favorite Things" because it reminds me of my Oma and Opa. Then I sing "Amazing Grace" because it reminds me of Aunt Agnes. And then I sing "Hush Little Baby" because it reminds me of Grandma. And I end with "Mary Had A Little Lamb" for no other reason than it appears to be her favorite. If I leave it off, she will not sleep.

Before I sing the songs, I go over the day's events with her. Sometimes between songs, I'll tell her a story about me or someone in the family. Or I'll tell her a fairy tale (a broken fairy tale, most generally, because I can never remember how those things go) or a fable (see fairy tale) or a mytho (I'm actually pretty good at those, even though she seems wholly unimpressed by my Greek prowess.)

Sometimes while I sing, she'll vocalize along with me, not really singing, not really in beat, but participating in a way. But mostly, she keeps her eyes on me, sometimes smiling or giggling but usually just watching, watching, until her eyes start to close.

It occurred to me the other night how big she's getting. I used to be able to cradle her in my arms. Now she rests in my lap, her legs dangling over mine, her head still rested in the crook of my arm. She's becoming less baby, more little girl, and it seems like it's happening overnight.

I know that one day soon I'll have to adjust the bedtime routine, maybe introduce a nighttime book instead of lullabies, maybe decrease the pre-bed cuddle time to more like 5 minutes instead of 30.

But I also know that these baby girl days are numbered, and someday all I'll have is memories of them, as I watch her grow more and more independent and self-sufficient. And so I say, screw it. I'm making the most of it while I can, and I will milk every last second of bedtime cuddles that I can, while I can.

Putting

So the OT came by today, and now we have strict orders to teach Kiki to put. Put! Put! Put!

Okay, not necessarily strict strict, but she pointed out that until Kiki can put, she can't move on to doing puzzles, stacking things, etc. etc. So we are at an impasse.

On the plus side, Kiki was extremely friendly and even allowed the OT to cuddle and love on her. She's becoming lovey-dovey! Yay!

Also have to work on the pinch.

She clapped once this morning with her own hands! Couldn't get her to do it again, but it did happen. Usually what she does is grabs for our hands and claps our hands together. She bangs toys together with wild abandon -- in fact, sometimes she gets quite irritable if she can't find two toys to bang together. The clapping itself, however -- well.

Well, we have a month to impress the OT. I know she can do it!!!

Picnics and such

We went to the DSGO picnic this last weekend and had a blast! I haven't been to any meetings or get-togethers or playdates or anything since the ONE time I went to a meeting, so it was good to see everyone again. Everyone is so nice in the group, and I'm glad Kipp finally met them.

He was kind of leery of a "support group" for DS parents, but it's more a social arena, where they group together to share educational resources et al. Plus, other babies for Kiki to play with. How can you go wrong?

Now all I have to do is actually make phone calls and playdates. Because I SUCK at socializing. I really, really do.

Anyway, we went to Bri's soccer game, then the picnic, then hung out with friends later that evening. All in all, great weekend!

So my brother-in-law introduced me to Bud Lite with Clamato in it. It sells in 24-oz bottles and tastes yummy. So I decide since we're hanging out with friends that THAT shall be my drink of choice.

Here's the thing about my liquor metabolism. I can drink Crown straight all night and catch and maintain a nice buzz with absolutely no ill effects the next day. I cannot, however, catch a buzz off beer, and one beer alone is likely to make me sick all the next day.

Want to guess what happened after I drank 4 24-oz Bud Lites with Clamato? No buzz, sick as a dog, and also -- bonus!!! -- heartburn. Yay! yeesh.

Still, if it's just one, I still think it's yummy.

Somehow I inherited a food trait from my Mom. As long as I can remember, if she ever discovered a recipe that was a huge success, she would cook it two or three times a week, or more, until someone complained that it was getting a little old. And then? She would never make it again.

Evidently I do this. I didn't even realize until Kipp mentioned it the other day. Oops.

The thing is, I could eat the same thing EVERY day and not get bored with it for months. Cereal for breakfast, grilled cheese with tomato soup for lunch, and chicken casserole for dinner, and I'm good to go forever. Kipp? Not so much. If we have the same kind of meat more than 3 times in one week, regardless how it's prepared, he sighs.

This makes me nervous now that Kiki is eating grown-up food. Right now she's an awesome eater, and I don't want to ruin that by boring her with food. On the other hand, I have no culinary imagination and even less time to muck with it. All I know is that it's important to give her fruit once a day (more than that and she gets a rash) and vegetables twice a day (less than that and she gets constipated) and at least one snack a day (less than that and she's not getting enough calories.)

It's too much pressure. Honestly.

And I'm constantly worrying that she's not eating enough at each meal. Normally people stop eating when they are full. I do not know when Kiki is full. I have yet to see her stop eating. I've settled for measuring out to feeding her a little less than the amount that makes her puke.

Sometimes she will cry and fuss when she's full, even though she will keep opening her mouth for more. This makes a confusing message for Mommy. And almost always, if she's had at least a little bit to eat, she won't complain of hunger for hours -- so again, I can't tell if she's had enough or too much or just enough. I go with just trusting my intuition, and so far this seems to be working, although it's needed quite a bit of adjusting along the way.

I put an eye patch over her good eye today for a few hours because I started to worry that her crossed eye had stopped responding to stimulus. On the plus side, she can obviously still see out of her bad eye -- the patch didn't slow her down an iota. On the negative side, I'm not sure it was the right thing to do... her eye remained looking squarely at the bridge of her nose, and she had to turn her head to look around.

I mean I knew that putting the patch on her eye wasn't going to straighten out the other one -- that's what surgery is for, and besides how much impact can only 3 hours have? -- but I think I had hopes for something that didn't quite pan out right. I'm happy she can still see out of her eye; that means her brain hasn't turned it off. And that's my goal for now -- to keep that eye on until her next appointment in June.

Percentiles

Kiki had her 1-year checkup last week. She's still off the charts on the DS growth chart, so she's still being charted on the regular kids' chart. Compared to other girls her age, she's no longer in the 50th percentile for height and weight... if I were the perfect mother, I'd have the numbers memorized, but I'm too lazy to even get up, find the paperwork, and look it up. Heh!

Anyway, she's dropped a little on the weight curve, although she's still progressing nicely along the height curve. The doc says the weight thing is to be expected, since she's now more active (and how!) than she has been before.

And since she's turned 1, she's off the formula and on whole milk and real food. I constantly question whether I'm giving her enough food. I know I give her healthy stuff -- I haven't bought prepackaged food for her (other than snacks like dried fruit or cereal) since she was about 8 months old.

Bragging rights to this home-cooked food-eating baby diet took a nosedive this week though...

During her 1-year visit, she had to get her chicken pox and MMR immunizations, and for the first time, she cried when she got her shots. So we got her ice cream afterwards. And then the next day, they had to draw blood for lead panels and thyroid panels and whatnot, and they took it from her arm, and she BAWLED, so on the way home, I bought her her very first Happy Meal. Hey, she can afford the extra calories. And she looooooooooooooves chocolate milk.

And tonight, she's spending the night away from home, so I broke down and bought her Gerber toddler meals, one for lunch and one for dinner. I don't feel too terrible about that actually, since I made up for it by making Malt O'Meal muffins for breakfast.

And they taste pretty good, too, if I do say so myself. :)

Kiki's Birthday Footage

Nobody can say this kid has an eating problem....

Make an on-line slideshow at www.OneTrueMedia.com

Putting on the Ritz!

If you're blue and you don't know where to go to, why don't you go where Kiki sits?

Make an on-line slide show at www.OneTrueMedia.com

I forgot...

Note the new links on the right there. One is to Flourish, a new web site community for parents of children with disabilities. The other is a video interview about research on Down Syndrome, hosted on Flourish.

Go check it out! I'm excited to finally be able to share its existence with everyone!

Done waiting!

I've been putting off blogging until I have actual video to demonstrate, but it's taking me FOREVER to get to that video processing stuff, so the heck with it. Gah!

First, her birthday was a roaring success! Bri and I made 2 dozen cupcakes, then Bri and Kipp arranged them in the shape of Pooh. (Sort of... it was cute. I have pics of that!) Then we sang Happy Birthday to Kiki, sat her in her high chair, and put a cupcake in front of her.

Now I've heard stories about kids at the 1st birthdays having no interest at all in their cake. No such problem with Miss Kiki. She smashed her hand down into the frosting, squealed with delight, then attempted to squash the entire cupcake into her mouth.

It was a mess. Note to parents planning their baby's first birthday party: pick a cake type that matches the color of the carpet. I meant to give her a carrot cake cupcake, but she ended up with a chocolate one. And after most of a cupcake and cup of milk, she puked in the livingroom. We do not have chocolate colored carpet.

And since then she's been leapfrogging through milestones. She started waving one day, the same day she started dancing. Now she dances almost any time she hears music. There are one or two tunes that she simply cannot resist. It's like she's wearing magic dancing shoes. After making her dance over and over for 2 hours straight, we almost felt like we were torturing her. But it's so damned cute!

She's also started to show an interest in trying to pull herself up onto her feet. And today, she started crawling -- actual crawling, not the military maneuver!! She's not clapping, but she'll bang toys together, and if she's holding onto someone's thumbs she'll do the whole Pat A Cake thing.

I have so much video, and not enough time. It's annoying.

But it has a been a very busy month for Miss Kiki. I'm sooo proud of her and can't wait to show off for her PT!

17,000

Great. GREAT. 17,000 words a day. Good LORD. You know, I keep telling myself to daydream out loud when we're in the car together, and I can't even do THAT.



That's it. I am on a crusade. It begins tomorrow.

(It would begin today but she's already asleep. Hey, does subliminal monologue count?)

Kids' TV

I've been watching a lot of Nickleodeon lately, and I've decided Dora the Explorer makes me nervous.

Don't get me wrong. I think it's great that there are still kids' tv shows striving to teach their junior audiences some Spanish. I applaud the imaginative presentation of different geographical types to stimulate young minds into making up their own games of exploration into jungles and swamps and rainforests and whatnot.

It's even quite fascinating that she feels the need to traverse those places even though she's fully aware that they're all inhabited by ravenous crocodiles, rabid squirrels, flesh-eating spiders, and Rodents of Unusual Size. Run from those cheetahs in your imaginatation games! I know I did when I was a kid! (Actually, I was always the cheetah.)

The only thing is, I'm not quite comfortable with my daughter picking up the belief that with a pocketful of cookies, a half-hearted Hokey Pokey move, and a goofy song of one word is somehow arsenal enough to save her from being devoured (or worse) by the diverse collection of deadly beasties she's certain to encounter.

What do they expect from me? That I have time in my day to counter every episode of Dora the Explora with an episode of Bindy the Jungle Girl? My God, I've never even watched Bindy the Jungle Girl. What if she expresses the same devil may care attitude about wild critters? Where do I find the time to research what show will counter Dora's daft teaching about how to deal with wild animals? And then what show do I use to counter whatever goofy flaw that show will have?

Will my daughter end up watching tv 24/7? Will I turn into one of those parents I used to laugh at, who writes stiffly irritated letters to network execs complaining that their program selection smells ever so slightly of devil worship?

Tune in tomorrow for another thrilling episode of....

Countdown... 4 more days....

It's hard to believe it's almost been a year! It seems like it's been a long year, that Kiki's been in our lives forever, and at the same time... a year? Already? What?

There's a buzz on the 'Net about Roadmap to Holland. Obviously, I must get my hands on this book.

I used to be an avid reader. I used to tear through books like nobody's business. In the last few years or so, I've dwindled down to about 2 or 3 books a year. Kipp, on the other hand, reads a new book every week. I've always been far more interested in fiction than nonfiction, but as I get older, the nonfiction motivates me more to read than the fiction does.

I must be getting old.

Today I caught Kiki practicing how to wave. She'd raise both arms in the air, then she would wave her left hand around (she's left-handed.) She was doing it all day. When I'd see her, I'd say, "Wave, Kiki!" and I'd wave back at her. She would laugh and wave at me.

Of course, when Daddy came home, she wouldn't do it anymore. It's like she won't demonstrate it to anyone until she's sure the skill is ready for prime-time.

I've taught her how to high-five and low-five, though. And if I let her hold my pinkies, she actually brings her hands together like she's clapping, so I think that's a skill on the way.

This week I've started telling her Greek mythos for bedtime stories. I started with Demeter/Persephone because it's always been my favorite. I was pretty impressed that I remembered the entire Parthenon. Isn't that odd? I can't seem to remember a fairy tale all the way through, but a Greek myth? Not a problem.

Now Aesop's Fables, I will need a book for, I'm sure. How many of those can anyone remember? I recall the tortoise and the hare; the boy who cried wolf; the baby and the bathwater; the satyr and the woodsman; the hawk and the tortoise. And -- that would be it, I believe. There's another one teasing around the edges of my mind, but I can't put my finger on it.

As for the actual morals that go with the fables? Umm. Slow and steady wins the race. Don't cry wolf. Don't promise what you won't deliver. Be consistent. Don't envy the world of another? Honestly, that last one should simply be, "Don't trust a freaking hawk, dumbass."

More Firsts

Tonight, Kiki had her first spaghetti dinner. I let her hand-feed some of it herself, and there was spaghetti EVERYWHERE. It was damned fun for both of us!

Yesterday, we went to Bri's first soccer game of the season. It was COLD, dammit. Well, the wind was cold anyway. I kept Kiki under my coat for a lot of it, though I admit it was a lot to keep ME warm. She didn't seem to have a problem with the temperature at all, though she kept squinting with the wind and the sun.

And of course, I ended up bundling her up under blankets in her stroller, where she napped peacefully the last 15 or 20 minutes of the game.

Bri's team lost by one goal, but they played well. We joked about Bri actually running this season (she's not very big on exerting herself.) She did great, actually got the ball a couple of times, and dribbled -- is that the right term? -- around the field really well.

I also finally had to replace my phone. It was 3 years old, and it had finally gotten to the point where I couldn't hear anyone unless it was on speaker phone, which meant that the people on the other end couldn't hear ME clearly. So I upgraded for free (I'm cheap) to a Razr (yay!) and now thanks to friends, a day later I have a killer ton of ring tones and am in cell phone heaven.

My computer, of course, has suddenly decided that whatever Bluetooth device it once had is no longer functional. I've had the computer for 2 years now, and the weekend I actually have some use for its Bluetooth functionality, it plays dumb on me. It figures.

When we were getting the phone, the saleslady leaned over the counter to smile and coo and wave at Kiki, who smiled back. "She's so cute!" the lady said, and I thanked her. We get much attention when we're out with Kiki, which of course makes me all poofy with pride and what not. Because she IS cute. She's freaking ADORABLE!

The lady went on to say, "God always finds the best parents to bless with a special child." It took a couple of beats for this to register, and by then she was continuing to tell about her grandson, who is autistic and learning disabled, and who is graduating from high school this year.

As always, I mulled this over later -- I'm a muller; I don't as a rule respond immediately to things. I know that Kiki as some facial characteristics that are recognizable for her Downs, but it doesn't register with me anymore, at least not like it used to. I think in the back of my head, I'd somehow convinced myself that no one else notices it either, that when they approach and compliment her, they're complimenting a beautiful baby, not a beautiful Downs baby, if that makes any sense.

And the other thing is this: I realized it doesn't bother me. It wasn't in the least bit of offensive; and in fact, I think she felt comfortable broaching the subject because of her experience with her grandson. It's something we immediately had in common, something we could talk about, like if two strangers wearing a jersey advertising the same sports team run into each other in the store and start talking about sports.

My mom was telling me today that she was talking to her cousin, to whom I send pictures every month, and Mom mentioned something about Kiki having Downs. I've actually never made it a point to tell many people; I've actually told none of my friends in California except for Yarnhacker, and I send many of them pics every month as well. And I've told nobody in the family except for Mom and both my Dads, and my step-mom, and I think my cousin. Mom's told my uncle, but that's about everyone who actually knows. And no one has ever asked me about it; and I'm not outwardly naive enough to think it's because they haven't noticed the characteristics; it's because they're afraid if they ask, it would offend.

Anyway, the point is, Mom mentioned it and Bon said she had wondered about that; she'd never said anything and wouldn't ask, but had suspected. (It then became a discussion about what Downs is, and Mom's rendition of that conversation is pretty amusing, but I will leave it for another entry.)

I can see if Kiki didn't have Downs, but still looked like she does, and I was as ignorant as I was before she was born, I would probably be put off if someone were to ask if she had Downs. But what I love? Is all the people who tell me what a beautiful and cute baby she is, and how genuine that is (because it is unarguably true). And I think, if in the back of their heads they're wondering if she has Downs but are afraid to ask, I think they're beautiful people and I love them and here's why.

Because they see the beauty in her FIRST, and they respond to that. And it strengthens me to know how many of those people there are in the world.

I think maybe I'm losing my cynicism.

Oh! I almost forgot the last story, which is funny, but almost at Kipp's expense. Poor Daddy. Anyway, I was carrying Kiki in from the car and as we passed Kipp, he leans in and says, "Kiki, want to give Daddy a kiss?"

And she said, "Nuh," and whipped her head around in the opposite direction with absolute authoritay.

After lunch and a nap, Kipp was playing with her. I was in the kitchen cleaning up, and Kipp started laughing and called me in. "Watch this!" he said. And she leaned forward, like she does when we play the Nose Bump-Beep game, but instead of bumping noses, she kissed him on the lips (well, she's not actually puckering and it's a pretty wet, slobbery affair, but it counts, right?) over and over and over.

I think she felt guilty about snubbing him before.

First Birthday Present

Kiki received her first birthday gift the other day. It came from Grandma, and it's this activity center that starts out as a floor toy, then you put it on a pedestal for sitting/kneeling height, then add another post to make it a standing toy. Right now I'm working on getting her to kneel, because she has no interest in standing AT ALL. (sigh)



Just the other day I bragged about the child having the patience of a saint, so of course she has immediately decided the finger food method of eating? Is too frustrating to continue. She still starts off trying, then she cries, then she cocks her head to the side and bats her eyelashes at me in the hopes that I'll be her hands for her.

I wish I could say I do not cave. But I don't feed it to her... when she does this, I just take away the finger food altogether, and finish up with her sippy cup. I'm not sure this is the right technique, but frustration isn't going to teach her anything either, right?

I wish she had come with a manual sometimes.

Being Friendly

So we went to Mamaw and Papaw's house yesterday for a belated Easter with family. I couldn't help but dress Kiki up a little bit take some pics with her and her first Easter basket (filled with candy Mom is gonna eat.)



She was a little fussy before we left, so I was worried that it was going to be yet another day where she cried the whole time. She doesn't seem to like their house; even I can't comfort her when we're there.

This time, I carried her in, without the carrier, let everyone say hi to her while I was holding her. She smiled at everyone -- she's beginning to do this now, instead of crying at people then turning to laugh at me -- and then I plopped her on the floor and surrounded her with her toys. Kipp and I took turns lying there with her for a little bit, and then?

She had a GREAT time! And everyone got to play with her a little bit without her pitching a fit. And for once I got to socialize with the adults. And it ROCKED!

The surprises didn't end there. At dinner time, we set up her high chair near the table. I made her a little puree of Easter dinner -- Papaw's famous green beans, and I put a little lamb in 'em to boot. Then I put little pieces of potato, lamb, and croissant on her high chair, with no real expectation that she'd be interested in it. She had never picked up Cheerios or those little toddler puffs off her tray before. But lately, I've been giving her baby crackers and teething biscuits every day, so she could at least practice feeding herself with big things.

Surprise!! She went to town on those little bits of food, getting all of it into her mouth! And she LOVED Papaw's beans (who doesn't?)

Anyway, all in all, a FABULOUS day. Yay!!

This morning, high on the success of last night's dinner, I put some puffs on her tray, and she ate 'em all, all by herself. Yay! The OT is gonna be so proud!

Speaking of which, when the OT was last here, she pulled out a stacking toy, the kind with the pole and the rings that go on it from big to small. Anyway, I went out and bought one and started working with Kiki on taking off and putting on. We got to the point where she was regularly taking the top one, the orange one, off with relatively no trouble.

So of course we have to show off for Daddy. I coached her and coached her, shooing away the dogs who were distracting her, telling her, "Kiki, take the orange ring off. The orange ring, Kiki." I'd take it off, show her, put it back on, and she just wasn't interested. Finally, I sighed, orange ring in hand, and told Kipp, "She was doing it before..." and before I could finish my sentence, she reaches over and pulls off the blue ring.

So, you know, I think she gets it.

Spring is in the air (finally!)

Just a quick break from the article so we can celebrate the sunshine! It's in short supply around here lately. For instance? Today it got up to the high 70's, was sunny, gorgeous, beautiful... and tonight, it is storming. Thunder. Lightning. Hard rain. Hopefully, the river will not flood again.

Sunshine! And Kiki's first swing!



Being the newbie mom I am, I forgot to put sunscreen in the diaper bag (it is in there now and will stay there until the end of time.) Being Missouri and March, her worst enemy anyway was the wind. So she got a little windburn, but it didn't seem to bother her, and it cleared up within an hour or so.

I started feeding her bites off my plate sometime last week, and now no one can eat in front of her without having to share. She sits with the dogs on the floor, and gives us pathetic, begging looks that completely outshine the efforts of the dogs.

The dogs are not amused.

Discussion of an article part 2

Moving on to the rest of the article. I aim to finish what I started!! Although days later, I'm not feeling quite so intense about it.

But, parents of children with special needs have been observed to be less responsive than are parents of children without special needs (Mahoney & Powell, 1988). Parental responsiveness and sensitivity are necessary to promote secure attachment among children with special needs (Atkinson et al., 1999; Clements & Barnett, 2002).

This was actually one of (many) fears I had when I was still pregnant and even a few months into Kiki's life, that I would remain emotionally detached from her. In retrospect, I think that was due to me not knowing what to expect from her in terms of emotional connection and attachment. It's not a mature reaction in any sense, but in some way I was afraid to get attached until I could be sure she was capable of becoming attached to me.

The same research that identifies increased stress and symptoms among such parents finds that the majority appears to cope well with these added demands, and remains relatively resilient. Many parents raising children with chronic health conditions and developmental disabilities report high satisfaction and enjoyment of their role.

Now I could list all kinds of weird, ignorant things I was afraid of even after Kiki was born. One day I cried all day because I was afraid she wouldn't develop a personality (she was exactly 2 and a half weeks old at that time.)

Some of the things I remember that went through my head while I was pregnant and while Kiki was newly born make me wince in shame when I remember them and some just make me laugh out loud. The fact is, as Kiki grew, and I spent time with her, it happened just like everyone assured me it would: we developed a very normal, natural mother/child bond that has grown stronger every day.

And personality? Oh. My. God. This is a child who, in my arms, will start to cry if a stranger approaches her and tells her how cute she is, then turn to face me and start giggling maniacally. She's fine with cuddling, as long as it's on her terms, and when she's done, she will let you know without a DOUBT that she wants DOWN NOW. She resists our efforts to coach her arms and hands into positions to do the things we want her to learn, but is quick as lightning when it comes to grabbing the things she wants, like our glasses.

As Yarnhacker puts it, the child is diabolical, and if we were to put our two daughters in the same room, they may just successfully plot to take over the world.

Crap, this will have to wait... she's learned just now how to climb over her barricdes and she's about to eat my power cord.

(All quotes taken from "Building New Dreams: Supporting Parents' Adaptation to Their Children With Special Needs", Douglas Barnett, PhD; Melissa Clements, PhD; Melissa Kaplan-Estrin, PhD; Janice Fialka, MSW, ACSW)

Discussion of an article part 1

So I'm planning to break this down into separate blogs, because I want to really delve into this. Consider it online therapy. I know, I'm not a celebrity going through rehab, so I don't make great reality tv, but it's my blog and I'll do what I want here.

We define adaptation as an ongoing process whereby parents are able to sensitively read and respond to their child’s signals in a manner conducive to healthy development.

First I want to point out that I'm no longer obsessing about any perceived attachment disorder. Really. I'll go into the reasons for another day, but honestly, I'm cool. She's cool. We're all cool.

The reason I included the above quote is because, well, I honestly believe I am able to sensitively read and respond to Kiki's signals. I know when she's hungry; I feed her. I know when she's tired; I cuddle her and put her to bed. I know when she's hurt; I comfort her. I know when she wants to be cuddled; I cuddle her. I know when she just wants to play; I get on the floor and play with her. I know when she's scared, or uncomfortable, or in pain, or just grumpy and unsettled. I can't tell you exactly if it's her facial expression, or the time of day, or the particular tone of her cry. I just know.

Reading this introduction and knowing what I know about my connection with my daughter buoyed my confidence in ways I can't even begin to describe. I've even decided that I need to repeat these things to myself in a daily mantra so that I remember to believe in my intuition and our connection.

Families with children who have special needs also experience more marital conflict and are less likely to be able to rely on prior social supports, as friends and family members are often unsure of how to help and may avoid becoming involved altogether (Powers, 1993; Speltz et al., 1990).

Our marriage, I am happy to say, has never been stronger. Kipp and I have always presented a united front on parenthood, and the addition of Kiki to our family hasn't changed that. Kipp keeps me balanced and sane, as well, constantly telling me that I'm a great mother, that Kiki's an amazing baby, how lucky we are to have her, and that we were destined somehow to be the family we are.

Now in respect to that last part, Kipp isn't really a big believer in fate or that kind of thing, yet on this particular point he feels quite passionate. I think that means something profound right there.

That's the plus side.

On the not so plus side. And I hesitate to get into this because I think it's a serious allegation to make, especially if you know (like I do) that no one will admit to it being an element in events at all. I want to say right up front that what I'm about to say is NOT any statement of fact in regards to other people's motivations or thought processes; it is only a reflection of what I suspect.

To begin with, I moved here from the west coast about three years ago. My closest friends live in California and Canada and my closest childhood friend lives in Kansas. I trust them all with every fiber of my being, and this doesn't apply to them at all.

In any case, over the course of the year I got pregnant, Kipp and I made some friends who we considered very close, a group of about seven other couples and ourselves. Now it was one of those Queen Bee dynamics, where everyone pretty much was a satellite of only one couple, which is an odd dynamic that I've honestly never been part of before. But that's really neither here nor there.

Anyway, during my entire pregnancy, we became closer and closer to the people in the group, to some people more than others. When Kiki was diagnosed, the support of the group was amazing. Everyone assured me that Kiki would be surrounded by love and support by all of them, and we were all family, etc. etc.

It's important to note that all but one of these couples had children, and that our older children were already part of that children's group. So we could hang with the adults, while the gang of kids did their own thing (supervised by an absolutely amazing babysitter who was the daughter of one of the couples in our group.) The ages of the group ranged from about 2 years old to the babysitter who was 16.

Emotional and hormonal that I was, depressed by the news of Kiki's condition, this group was an absolute life-saver. I felt hope in that Kiki would be extremely socialized, as we were in the habit of getting together with this group of adults and kids 1 to 2 times a week, and not just with adults, but with other children. I'd ready studies that showed that babies developed faster when surrounded by older children that they could learn from and mimic, and it thrilled me that we had this environment promised to her.

Then Kiki was born. I took her to visit the Queen Bee a couple of times and to see another woman in the group a couple of times. The latter woman I felt a particlar affinity to because her career dealt with care of disabled children, and I believed of anyone I knew, she would be particularly sensitive to my particular needs in the support area. We went to one group get together after Kiki was born.

And then two months after Kiki was born, we were booted from the group. And because it was a Queen Bee dynamic, we subsequently lost everyone else as well.

Now there was a major overlying event that initiated this that had nothing to do with Kiki, and we were one of four couples booted from the group within a six-month period following that. And at first I was so overwhelmed by the loss of everything I had depended on with that group that it didn't occur to me that any part of it could be related to Kiki.

But then I read a blog written by parents of a child with Down Syndrome where they had experienced something along the same lines, but had actually overheard some of their friends talking about their discomfort around the parents and the child because of the child's condition.

Reading that actually froze me in my tracks, and made me begin to wonder. Again, I can't make an actual accusation, but in my gut? I wonder.

We stayed close to the other refugees, as it turned out, and kept our amazing babysitter. As time has gone on, we have built a whole new support group, and have even better, closer, more supportive friends, and all of them adore Kiki, and none of them are in the least bit discomfitted by the situation. So we landed on our feet, and all is good, and there's no Queen Bee dynamic.

But there's not the same frequency of getting together, and there's no basic foundation of children as there was in the previous group. Which has simply prompted me to seek other avenues to pursue playdates and whatnot, so again, I am not defeated, per se.

Still, it took me a long time to recover emotionally from all of that. And in the process, we've become alienated from my brother-in-law and his wife, with whom we previously had been rather close.

Along the lines of family support, my own family doesn't live anywhere close. My mom is as supportive as she can be, but she's not here, and sometimes that depresses me. I've never been extremely close to my father, but I suspect -- and again, I may be totally selling him short -- that he's somewhat unsettled by Kiki's condition, and probably enjoys his position of distance, where he can enjoy that he's a grandpa without dealing with the reality of it.

My parents-in-law are fabulous and I love them to death and they dote on Kiki. However, we don't see them very often, and when she started making strange and she didn't get over it quickly, it's made them nervous to be around her.

Which, by the way, prompted this whole obsession with attachment. My mother-in-law, bless her heart, I know is trying to rationalize why Kiki is not warming up to her as quickly as we all want her to. Now I know a large part of it is due to the fact that whenever she sees them, it's at their house, and Kiki for some reason is not happy in their house. I know it's particular to their house because even I can't comfort her there, and I can comfort her anywhere.

The solution to the problem would be to see them more often, to have them come visit Kiki on her own turf until she's committed them to memory. However, this has yet to happen. My mother-in-law is not particularly healthy, and she rarely feels like getting out of the house, and my father-in-law is extremely busy with work and community work.

So in the end, I know my mother-in-law is bothered by Kiki's seeming rejection, and I know she's trying to rationalize what's going on. That's what prompted her to come to the conclusion that the reason Kiki is so insecure around other people, and so dependent on me, must be directly related to her Down Syndrome.

I can't find any proof of that. And anyway, I know my daughter. And I know she's actually fine with people she doesn't know as long as her exposure to them takes place within certain parameters. And I know she's not actually rejecting anyone; she's just going through a normal and necessary phase of development where she's learning object permanence and how to distinguish people from one another.

And noticeable attachment to a primary caregiver? Very good thing.

I shouldn't be as sensitive about this, I know, and I know I tend to blow things all out of proportion (who? me?) But sometimes it's just frustrating. I know what I want for my child; I know what I want to provide for her. But the people outside my control, I can't control, and it frustrates me no end.

(All quotes taken from "Building New Dreams: Supporting Parents' Adaptation to Their Children With Special Needs", Douglas Barnett, PhD; Melissa Clements, PhD; Melissa Kaplan-Estrin, PhD; Janice Fialka, MSW, ACSW)

Subtle Lines

I'm very open here about Kiki having DS, and I'm not shy about discussing it here. But in everyday life, I'm kind of sensitive about it. I don't want to draw attention to her disability; I don't want to draw attention to myself as the parent of a child with a disability. If we garner attention, I want it to be because she's so damned cute, people can't help but notice her.

I'm sensitive about the idea that I'm trying to court pity or sympathy with people if I bring it up or if I discuss it and the insecurities it brings up in me. I don't want pity. I don't even want to be set aside in a separate category of parenthood; even just writing "parent of a child with a disability" it sounds foreign to me, clunky, unwelcome, like it may describe someone else, but it definitely doesn't apply to me.

I'm sure this is more commonly referred to as "denial."

But I really do believe that I'm no different than any other new parent. So when I read things that are all supportive and fluffily reverent of parents of disabled children, it makes me nervous. I know on some abstract, gray level they're talking about me -- not specifically of course, but that I'm included in this morbid generality -- and I try to look at our situation through that filter, and I think, "This must mean that somewhere down the road, life is really going to fucking suck."

Because right now, in all honesty, life -- barring the day to day annoyances like finances, weather, in-laws, work, etc. -- life is so beyond more fabulous than I've ever imagined.

Life with Kiki is more glorious than I've ever imagined life with a baby would be, and I'll tell you, I have a fantastic imagination.

I won't at the moment go into WHY I spent tonight scouring through the internet for anything related to DS, separation anxiety, and ultimately attachment disorders, but to cut to the chase, I found this article http://depts.washington.edu/isei/iyc/barnett_16_3.pdf. It's REALLY long, and turns out I think to be something specific to a support group, but the first few pages that I read made me go, "Hmmm." Because I did recgonize myself, for the first time, in their description of a parent of a disabled child. And in some strangely indefinable way, it reached a part of me I didn't know was there, and it made me cry.

How many times have I written that now in this blog? Maybe if I keep writing it, it'll sink in. But it's just a label, in the end, and doesn't adequately describe or represent anything in my life.

I'll go more into detail later. For now, it's late, and I still have work and not enough time at the moment to indulge myself in philosophy.

Sweet Tooth

In celebration of her new tooth, I gave her a teething biscuit. She went to town on it, and I had to use a hose to clean up afterwards.



She was obviously fascinated by her tooth, too, as evidenced by how she fell asleep Friday afternoon, the day it popped through.



See? She's pointing to it in her sleep.

It appears there's another one coming through right next to it. Today she's running a fever, and she's PISSED OFF because I won't cuddle her all day. I need batteries for the swing, or as I am calling it this week, the Surrogate Mommy.

Well that explains everything.

So this last week, my perfect baby has been cranky and demanding. Mind you, I'm spoiled rotten by her, so her 5-minute tantrums 3 or 4 times a day have been VERY draining on me. I know. Pity me.

And my dog, my usually laid-back, sleeping from dusk to dawn anywhere near me dog, has just been PACING around her. Pace, pace, pace. Hover. Pace. Whine. Pace, hover. Check her out. Pace, pace, hover. ARRRGH. It's been making me INSANE.

Now, Kiki has not been feeling well. She has yet another ear infection, or the last on never really went away, and now she's on a different antibiotic that turns her poop blood-red. (Nifty, huh? You think you can handle any kind of poop that comes out of your baby after 11 months of training, and then you get RED poop. It's boggling.) So I kind of figured she just was sick-cranky.

And the dog, I figured the dog was developing some kind of maternal bond for the baby, and being concerned about the baby not feeling well.

It turns out I was mostly wrong on both counts.

Friday morning, when Kiki grabbed my hair and chomped on my chin, which is one of her favorite pastimes now, it HURT. The little vampire had sprouted a tooth OVERNIGHT. It's her front bottom tooth, and it hits the soft flabby stuff under my chin juuuuuust perfectly when she chomps for her entertainment.

Yay, tooth!! And ouch. I am a weenie when it comes to pain.

And the dog? Protective? No. The dog has figured out that if she is closer to the baby than I am, then she can clean up the baby's spitup before I can get there. Lovely.

So much for having a supernatural diagnostic sense. I guess I'm just normal after all.

How can this be comfortable?

This? Is how my baby sleeps.

Bonding

Last night I finally bit the bullet and attended the monthly meeting of our local DS parents' group. I took Kiki with me on the off chance that there might be other babies her age to play with.

Score! There was a little girl about 18 months old there in the day care room. I plopped Kiki in front of her on the floor. They stared at me; they stared at each other. Then they both leaned forward in slow motion and grabbed each others' noses.

Kiki was so engrossed in the new toys and little people her own size that she didn't even notice me leaving. The woman in charge assured me that if Kiki started crying, they would bring her to me.

Sure enough, about an hour and a half later, I hear an approaching cry. You know, I kind of assumed all babies sound alike when they cry. But I recognized Kiki immediately. I jumped up and made it to the door before they did! And of course, the minute she was in my arms, she was immediately smiles and giggles. The little monster.

But she did so good! One and a half hours in the care of strangers without incident! So I will continue to go to these monthly meetings. The information itself was great, and networking with other adults is always a good thing, but the socialization with other babies? Priceless.

And of course, I used the opportunity to aggressively pursue play dates. I collected numbers and names and all that. Because I am a pit bull mom or something.

We set therapy goals today for Kiki. She'll be starting occupational therapy pretty quick here. In the meantime, we're working on her tracking and passing smaller objects from hand to hand. I'm trying to encourage her to take things out of things and put them back into things. So far she just thinks it's fun to hear me cheer when she accidentally drops a ball into a cup.

She picked up a new game really fast. I pressed her nose with my nose and said "beeeep" like maybe twice, and now she does it. She'll lean forward and press her nose against mine or Kipp's as long as we'll "beeeep" for her.

And to truly prove she got the point of the game? Today during speech therapy, Ms. A put a large mirror in front of her on the floor. She said babies, when first introduced to mirror play, will generally just reach out for the mirror and touch at it.

Kiki scooted right up to it, grinned, and pressed her nose against it. "Beeeep!" I said immediately, because I am as trained as they come, and she giggled and did it again. And again. And again.

I think I'm on to something here. I'm not sure how to incorporate it into teaching her other things, but.... I think I'm on to something.

Updates et al

Oh how winter sucketh.

So last week, I took a friend and her daughter out on an errand, and while I was playing with Kiki in the waiting room, I noted some dried discharge on the outside of her ear. Not earwax; it had obviously been thinner before it had dried. So I immediately called the doctor and took her in the next day. Her ears are STILL too small for the doc to get a good look inside, but she got a good enough look to note that yes, Virginia, there was drainage. Welcome to another round of amoxycillin, her second in 3 months. Is that bad? I honestly don't know.

Then a weekend of breatkthroughs! In one day, she started smacking her lips -- if she just vocalized behind it, she'd be making "mamama" or "bababa" sounds. And she's mimicking what Kipp does: if he dances, she dances. If he smacks, she smacks. It's awesome!! For me? She smiles. Or giggles. I can't really complain about that in all good conscience, but darn it.

And then Monday, we all took sick. Tuesday, I was completely winded, and ended up at Urgent Care. I'm much better now, but it's taken a couple of days of Kipp pretty much taking a couple days off work just to take care of me, the baby, and all else. Which makes him appreciate me all the more, of ocurse.

Today, she had her first eye appointment. She has nystagmus, which we knew. It seems to me to much less pronounced and less fast than it was when we first noticed it, and the doc thinks it's possible it might self-correct. The cross-eyed part though will probably require surgery -- 20 minute outpatient surgery -- when she's older. For the moment, no need for glasses, but eventually -- well, Kipp and I are both near-sighted, and evidently people with Downs have a propensity for near-sightedness anyhow, so... foregone conclusion.

Tomorrow, she has an occupational therapy evaluation. The running joke is, "Do you really think she's old enough to work?" Heh. And no. Fine motor skills, people, fine motor skills.

I'm starting to work with her on the skill of putting her toys in a basket, as well as introducing her to books. Well, the book thing is planned today. I have strategically planted a fuzzy book in her play space, and we shall see how she reacts to it.

And that's the news for today!