Tuesday, December 30, 2008

Alpoecia Confirmed

So we went to the dermatologist today. He did not flirt with my girl. He just pulled on her hair. And then he said the following.

It is an autoimmune reaction. It usually happens in adults and young adults, and can usually be treated with things like Rogaine. But we cannot treat Kiki, because they can't use those same meds with a child younger than 2.

Now most often when people have alopecia, it will spontaneously start growing back all by itself. Except when they show the same balding patterns as Kiki, which is to say balding along the bottom, and huge patches on the back of her head.

Because she has this particular kind of alopecia, it puts her in an even higher risk category of developing autoimmune thyroid disease.

We will bring her back in 4 months, when she is 2, and it's possible we may be able to treat with Rogaine. It's more possible that she will lose more hair, and all of the hair loss will be permanent.

Oh wait. No, that would have been the GENTLE way to put it. This is actually how he phrased it.

"Come back in four months. If her hair shows signs of regrowth, we'll try topical Rogaine treatments. I suspect however that there won't be signs of regrowth, and that she'll have lost more of her hair. And in that case, I will recommend that you shave her head and go for the Sinead O'Connor look or buy her some wigs."


Saturday, December 27, 2008

Christmas Update

I'm still catching up!

Every year, we spend Christmas Eve at Mamaw and Papaw's. It's been a family tradition since before I moved out here. Evidently everyone used to spend the night there on Christmas Eve so they'd be there Christmas morning. But things change. So like I said, since I've been here, it's Christmas Eve at Mamaw and Papaw's; and then B & C spend Christmas Day with their mom.

So we picked them up on Christmas Eve and had them open up their gifts from us before heading over. Christmas Eve started late this year because Chip had to work. While we were waiting for time to pass, Kipp broke out the rainbow sherbet. As always, Kiki immediately hung out by him to get some. And then the older kids soon followed suit.

We finally headed over and for the first time EVER we were the FIRST to arrive!!! Go us!!

As we settled in, Mamaw surprised us with a Christmas dress for Kiki! Kipp and I immediately began to quibble over whether or not to put it on her -- I wanted to, but Kiki is so difficult to get dressed these days AND she gets pissed off to boot. So I was about to give in, grudgingly, when Kiki promptly puked up rainbow sherbet all over herself and me.

I did not have a brand-new Christmas dress handy for myself, but nobody cares about how I look. :)

It comes with a little hat, and for Christmas Eve, she kept it on all night without seeming to care. I of course forgot my camera, so I put her in it today to get pics. She did not like the hat today.

Mamaw and Papaw always get such awesome things for the kids. They didn't know what kinds of toys to get Kiki, so they stuck with clothes and shoes, which means y'all are going to be getting pics of new outfits every day for a week. At least. If I don't get lazy. Boots! She got boots!! They are adorable.

Today, Santa Papaw came to visit, which is why she was in her Christmas dress two days after Christmas. So yay! We're on track with pics with Santa 2 years in a row!! (And the nice thing about Papaw being Santa is that we get as many pics as we want. Be warned.)

Let's see... I want...

The always necessary crying on Santa's lap photo.

You ARE real!!!!

And giving Santa a kiss.

And I have to end it with this one 'cause it glows with attitude and Christmas spirit.

Friday, December 26, 2008

Yay! Pics!

So after I threw my online tantrum last night, I sulked until Kipp was ready to go to bed, at which point he of course noticed I was upset. So after I explained I couldn't find my USB cable, he immediately started to search for it and found it... in my pile of stuff right by my side of the couch. Yeesh.

I'm such a big baby.

Anyway. PICS! Yay! Pics!!

This is Kiki before she got her haircut. Notice the real ponytail! I was so proud, but now that I look at the pics, I see where the bald spots are (you can see 'em peeking through the hair), and so I think this has been going on longer than I thought. I can't believe it took me so long to notice.

And this is Kiki getting her first haircut. It was such a cool place but soooo expensive. Still, it was worth it just for the experience. She was so good, which is awesome because I was worried she'd be all squirmy.

And this is Kiki with Grandpa JP. They just absolutely adored each other.

And Kiki with Grandma.

And Kiki with her mom, who obviously needs a visit from What Not to Wear and the Hair Dye Fairy.

And Kiki with Daddy, showing how she signs "I love you." She's got to be unique.

And this is how she waits for us to get her when she wakes up.

And this is how we found her sleeping last week. Yes, she's asleep. And yes, her feet are touching the ground.

Well, that's plenty for an update for today. :) More this weekend!!!

Thursday, December 25, 2008

No pics

Right. So I was all avoiding the camera while Kiki was balding because I am VAIN. And then I lost a camera, the only camera that had a USB cable I could find because cameras appear to have weird proprietary USB connections that nothing else on earth have, and even if you have two cameras of the EXACT same brand, except 2 years difference in age, they will have different cable requirements as well.

But I still had A camera, so I used it when I came to my senses, the day before Mom and JP left and I realized, "Oh, hey, I didn't get any pics of Kiki with one of her sets of grandparents."

And then I forgot said camera when we went to another set of grandparents' house on Christmas Eve. Because I am stupid.

And then I found the LOST camera, which was NOT lost but actually expertly hidden from children (and, obviously, my own self), and it turns out that the one I had NOT lost was actually the one that had a cable I could find, only guess what? I can't find the cable now!

And I haven't been able to find my card reader for, oh, I don't know, 500 years or something.

So. I have pictures. But because I am a great big huge lameass, I cannot share them. At all. With anyone. Who isn't sitting next to me.

Which is, you know, all my family and closest friends. You know, the people who are the most important in MY life, most of whom have never met my daughter face to face, and rely on ME to keep them updated as to what she's doing, how she's feeling, the funny thing she did this morning, and, oh yeah, WHAT THE FUCK SHE LOOKS LIKE THIS MONTH.

So I am having an utter meltdown, obviously, without having a visible meltdown, so right now as I bitch online, my husband is sitting across the living room, singing to a capella music only he can hear while he plays electronic solitaire and I AM LOSING MY MIND.

Why am I always losing my shit? Why don't I ever lose someone ELSE's shit for once? Why is it always my stuff that ends up completely MIA? It's not like I strew my things all over the house. I have exactly ONE FUCKING PILE next to my side of the couch in the living room and then ONE FUCKING PILE on my desk upstairs. That's it. That's the full extent of where I put my FUCKING ELECTRONIC CRAP.

And yet somehow it disappears. Usually when things get CLEANED UP.

Well, whatever.

Other than the past hour, we have had a fabulous Christmas.

I hope all of you had a fabulous Christmas too. Please forgive my moment of madness.

Monday, December 22, 2008

What she's doing now...

1. Her first word is definitely "Up." I've been reinforcing it now for 2 weeks, saying "Up" every time I pick her up, and Kipp's been doing it too. I didn't know the sign for Up, so we just used the word... and sure enough, she started using the word every time she wanted to be picked up. It makes me wonder if continuing to teach her signs is a good idea?

2. She's now walking anything that moves around the living room: her toybox (which is just a big plastic container), her car, whatever. She can stand without bracing herself on anything for a good 10 seconds without wobbling too.

3. She's learned how to crawl through the entertainment center to get around the gate. We really need to babyproof the kitchen and get rid of the barriers. Kipp started putting the stuff on the cabinets, but evidently the cabinets are cheaper than we thought... the screws are kind of damaging them.

4. Either she's watched too many Discovery channel things about snakes or she's just mimicking us yawning, but she's taken to opening her mouth as biiiiig as she can. Just because. I'm trying to get her to do it and say "aaah" because won't the doctor be happy if she'll do that?

5. I'd read and heard that kids with Ds, their teeth grow in out of order. I thought maybe Kiki was spared that 'cause her two bottom teeth came in, then her two top teeth, then two more on the top, and then.... one on the bottom. And then her molars on the top, leaving a big gap between them and her front teeth. And it looks like her molars on the bottom are poking through now as well. And only three bottom teeth in the front... I was sure she had four. I'm beginning to wonder if she lost it or broke it.... every time she falls unexpectedly, she bites her tongue. And I noticed she grinds her teeth. Ack! I was supposed to ask the doctor when to take her to a dentist! Man, I need to make a list.

And tomorrow we Christmas shop. Ho ho ho!!!

Saturday, December 13, 2008

Holiday Movie

Just got an email from our local chapter with this link to a story about The Child King movie.

I hadn't heard of it before, but it looks amazing, and so I thought I'd pass it along. :)

Friday, December 12, 2008


I feel like such a pretender these days. Such a wannabe. And now I feel like I'm bragging.

But here's the thing. Okay, supposedly I'm the mother of a child with special needs. But then I spend like five minutes watching Kiki play or babble to her mirror or laugh or eat or anything and everything and I think, "Where? Where is the special need part?"

The disability hat? Doesn't fit my daughter.

What has changed? My attitude, and that's all.

I feel so good these days. It's wonderful to wake up in the morning and not remind myself, like a mantra, "She will be okay. She will be okay." I don't have to anymore. Because suddenly I believe; I truly believe and have absolute faith in her.

It's also exactly a month and a week after I started taking Prozac. So you know.

Yep. That's my big confession for the year.

Now for bragging rights! She's pushing her walker car all over the living room. She'll walk it until she runs into something, then she'll drop into a squat and then sit and then crawl somewhere to do something else. She's also begun scooting around on her butt when she's carrying something somewhere. Hopefully she'll soon discover that walking is more efficient.

We're currently working with puzzles. She's not quite got it yet, but she's getting real close. And she's occasionally saying "Up" when she wants in my lap.

Havethe day off today so I'm gonna go play with my baby!!

Monday, December 8, 2008

I Love You

So Kiki has made up her own sign for "I love you." We were trying to teach her to cross her arms across her chest for "I love you," but we kind of gave up on that a few weeks ago.

Then Kipp noticed that most of the time when he says "I love you" to her, she tucks both of her thumbs under her armpits, like she's flapping like a bird. I said "I love you" to see if she would do it for me -- and she did. And she's immensely proud of herself for it too!

And she's taking more and more steps behind her little walker car, even beginning to push it by herself.

And yesterday was one of those moments I wished I had a camcorder attached to my forehead. She treated me to an impromptu puppet show. I am not even exagerating!

She started off her story by holding her arms over her head, her hands pointing down in a great imitation of Daniel doing the crane in Karate Kid, and growling loudly.

Then she looked at her right hand and babbled to it. Then she babbled to her left hand. Then she babbled to her right hand again. Finally one last babble to her left hand.

And then she fell forward, slapping the floor with her hands in a great big bow. Then sat up and giggled merrily.

This kid is going to be a great storyteller one day, I just know it. She's been composing these stories in front of her mirror for months now, but I've never seen her do it without the mirror.

Speaking of her poor mirror, it is in such sad shape. Most of the animals don't even talk anymore (only the lion and the elephant.) But I love the way she interacts with her mirror, making up these long stories and watching herself perform them, so Kipp and I ordered her a new one for Christmas.

This is the new and improved mirror she's getting!

Thursday, December 4, 2008

Winter Colds

It's been busy since Mom and JP have been here, and all of us have been sick. Kiki finished her 10 days of antibiotics, and she's still snotty, so I called the doctor today. She had an appointment set for Monday for her shots, but I knew they wouldn't give 'em to her if she wasn't feeling well anyway, so...

So we took her in today, Mom and I, and met her new pediatrician for the first time. I think I've mentioned before that Kiki warms up to men faster than women, so I kind of figured she'd like him right away anyway. And he wore glasses and had face fuzz, so she was in heaven. The first thing he did was get down to face-to-face level with her, give her a big grin, and tell her how pretty she was. Instantly charmed, she held out her hand to him, which she only does to people she approves of, and he kissed the palm of her hand which passes the test. She giggled and was his.

And you know? Anybody who is that charmed by my child? Is aces in my book.

I asked him a couple of questions about preventive care to test the waters, make sure he knew more than I do, which he does, thank God. Thyroid checks, ENT checks, X-rays of her spine starting at 2 years, all of that. So he passed my test too.

I asked him about her bald spots. He said it definitely looked like an autoimmune response and asked if it coincided with her recent cold. It hasn't really; it started about 1 to 2 weeks before she started getting snotty, but she did start this snot thing about 2 months ago (I think) as well, and we were treating with Benadryl because she didn't have any signs of infection, and her previous doctor thought it might be allergies.

He is setting us up with a dermatologist just in case, but he assured me he's seen this before, and he checked out every inch of her scalp. He said in his experience, the hair has always grown back. He said also that with this kind of autoimmune response, we should count ourselves lucky that her system focused on her hair follicles and not something like her thyroid or pancreas, which it could also do.

So, you know, yay.

We're taking her back to the hair stylist tomorrow for bangs, regardless. I know she'll look a little thin on the sides but you know what? I keep having to pin her hair back to keep it out of her face, and if that's what's contributing to the thinness and breakage around the sides, then it's never going to stop. I need the hair out of her face, out of her nose.

I'd post pics of her current 'do, but there's no point. It's not a haircut right now so much as a trim; it doesn't look any different.

Let's see. In other news, Bri's Christmas concert was tonight. She's in choir and she had a solo! She did absolutely awesome; no stage fright and no fear of the microphone. I was so proud!!! I even let Chris hold the videocamera for some of the concert, so he was pretty happy.

Thanksgiving was fantastic. My brother-in-law sells these ceramic smokers, and so he treated us by smoking a turkey. My father-in-law made prime rib to go with. So we were all well-fed with yummy stuff. Kiki ate bunches, and I was soo happy because she'd been turning away meals for a couple of days leading up to that. And then to top off the evening, she managed to convince the whole family she was saying "I love you."

I remain unconvinced because I never heard it. Little stinker.

I'm also reasonably convinced she can walk, only she's refusing to do so. I've caught her standing without support for a full 30 seconds before she realized what she was doing. She sits down with complete control; she doesn't just fall back on her butt anymore. And she cruises from furniture to furniture without any effort. If she's engrossed with the spinny thing on her walker/car, I can make her take up to 6 steps before she stops.

She will NOT walk if you hold her hands. The minute you grab her hands, she kicks her feet up and hangs like a little monkey. So Kipp has taken to standing in front of her until she pulls herself up to standing using his legs. Then while she's hanging onto his pants, he'll start walking backwards and she'll follow. But touch her hands? Monkey time.

I like to think she's holding out until Christmas Day, because this will be her Christmas gift to me. I only hope I'm holding the video camera at the time!

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