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*
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.
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.
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.
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'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.
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.
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!!
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.
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!!!
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.
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 very first ultrasound, when I was 23 weeks pregnant, showed some soft markers for Down syndrome or Trisomy 21. She was officially diagnosed four weeks later via amniocentesis.
Thanks to First Steps, Kiki has been getting physical therapy since she was 4 months old, speech therapy since she was 8 months old, and occupational therapy since she was 11 months old.
She is an active, engaging, happy girl who has an incredible curiosity and a contagious, bubbling laugh. Our lives have been unimaginably changed and enriched by her, and I wouldn't change a thing about her.
I'm originally from the west coast, but now live in the midwest with my husband Kipp, our two dogs, my stepdaughter and stepson, and our youngest daughter who has Down syndrome.