Tuesday, January 27, 2009


Kiki is 21 months old and has officially grown out of her 12-month-old clothes.

I know this because I tried to make her wear her I Love Santa shirt to bed last night. We got it for her for Christmas of 2007. It was too big for her then. It just fit her on Christmas of 2008 (yes, I did try to make her wear it. In fact, she did wear it until she puked up rainbow sherbet all over it.)

Last night, it was a little short in the arms and kept crawling up her chest like it thought it was a belly shirt. She's a little young to be sporting a 6-pack, so I figured it was inappropriate even for bed, and I chucked it.


Not 'cause I didn't like the shirt, but you know. She's growing again!!

And then I decked her out in a 12-month layette with the snaps that turn it into kind of a nightgown. Because I'm all kinds of fashion conscious. And with pajama bottoms. Because it was cold.

It's been storming ice nonstop since yesterday, and an hour or so ago it began with the great big chunks of humonguous snowflakes. I think we're gonna be snowed in in the morning.

Thursday, January 22, 2009

Busy Busy Busy

Well, I've had actual court docs to transcribe all week. One! Day! Turnaround! Ack!

My mother-in-law has been over every afternoon this week (except Monday, court holiday) to watch the monster, bless her heart. Kiki is not so thrilled. Kipp's schedule this week is 10 am to 9 pm, so he sees her an hour or so in the morning and that's it. So Kiki has been missing Mommy AND Daddy all week, and she's been taking it out on her poor Mamaw. Oh, the screams!

Yesterday, Sue just bundled her up into the stroller and took her out around the neighborhood for an hour. She was fine the rest of the day. Between the screaming! and the cold, fresh air, she completely passed out at 7. She woke up around 2 am, and Kipp got to spend about an hour with her before putting her back to bed, and then? She slept until 10 am this morning! Wow!

Which of course puts her schedule all over the place. Yie.

One more day of court work this week -- Friday's I can do over the weekend -- and then 2 days next week. I'm just looking forward to payday! Woot!

So it's a short blog today because I want to play with my baby for a while. Here's a pic to tide ya over... not incredibly recent, earlier this month. I'm thinking of taking a pic of the top of her head for posterity, which I'm sure she'll love me trotting out on her prom date.

Kiki's new trick: saying Aaaaaah! Her pedi was thrilled. :)

Monday, January 19, 2009

And the answer is...

Thyroid test... negative.

Diabetes test... negative.

Celiac disease..... DING! DING! DING!

So it is official. And I shall never second-guess my gut instincts again.

And also? I obviously must get more militant about this gluten thing. Positive blood test after supposedly being gluten-free for 3 weeks? I must be doing something wrong.

Sunday, January 18, 2009

Some Photos

I know. I've been bad about photos. Have I mentioned my vanity?

Anyway, I did take some pics of Kiki in one of her new outfits that she got for Christmas. I dressed her up to visit her Papaw at work. After admiring how beautiful she looked, he asked, "Umm, aren't those boots a little big for her?"

Well, but they're SO CUTE!!!!! And it's not like she's walking in them. But I do love how it makes her legs look so puny and bandy. She looks almost like an anime creature.

This was taken earlier this month. I haven't taken any pics since then. I have some others I will upload (when Kipp isn't playing CounterStrike and bitching at me for mucking with his bandwidth) from the same week.

No word from the doc yet on the test results. Of course, I neglected to ask him how long I'd need to wait. 'Cause, you know, I'm smart that way. It comes from watching Noggin 100 hours a day.

I don't really have any other updates. I just wanted to upload a pic because, well. So we had a SanDisk once (can't find it now) that we used to transfer our pics from our camera card to the computer. Then when I lost that, I started using the camera itself to upload the pics, but then I lost its unique USB cable. So then I started using the OTHER camera to upload pics, but you KNOW it's only a matter of time before I lose THAT cable for good.

So anyway I was hunting through my office and laptop briefcase for something over the weekend, and I found... something.... that my laptop actually CAME with that I didn't even KNOW about. Yes. An insertable memory card reader. One that stays in the laptop ALL THE TIME so I won't LOSE it.

And obviously I had to try it out. Yay! It works!

I know. Don't even say it.

Friday, January 16, 2009

More Alike Than Different

Saw this on Raising Joey, and I had to share it too! The National Down Syndrome Congress has started a More Alike Than Different campaign, and the following are some of the spots they've videoed.

Thursday, January 15, 2009

Week in Review

It's been a busy, busy week.

Kipp had Monday off, and it just so happened to be the Monday of the local parents' group meeting. They had a couple of guest speakers we were really interested in; a married couple in their 30s. Both of them just happen to have Ds.

It was both enlightening and sobering in some respects. Like I said, they are in their 30s, so they grew up in a much different world than our kids are growing up in now. They didn't have early intervention. They weren't mainstreamed in school. When they got married, their group of peers, a small group of adults who have Ds that they grew up with, stopped socializing with them. The reason, the young man's mother (who was up there as a guest speaker also) explained that the parents of the others wanted to avoid trouble; it's heartbreaking to have to tell your child they can't do something, and if any of them had been influenced by their example and wanted also to get married, it would have brought so much trouble to them.

The couple was so charming. The man was very well-spoken, and the woman very shy. They were both funny, and had amazing comedic timing. They both work; she is a bagger at a grocery store, and he works in the bakery at Wal-Mart. He was asked how much he makes (since he's not drawing SSI), and he informed us $10.45 an hour. The room was really impressed by this, and he grinned at us, and rubbed his fingers together in the universal sign for "mucho money."

They held hands often during the meeting. She often laid her head on his shoulder. He did almost all of the talking; she is hearing-impaired and her hearing aid is broken.

They live with his mom, who maintains guardianship over him (so they aren't legally married.) She agreed to let them marry, as long as they agreed to have the woman's tubes tied. They both love children, and were hoping to have children of their own, but the man's mother stood her ground. "There's a difference between loving kids," she said, "and being able to take care of them 24/7." The couple does have several dogs; the young woman said her dog was her baby. When asked if she was okay with not being able to have kids, she hesitated then said firmly, "No. I wanted a baby." But she sighed with resignation, and laid her head on her husband's shoulder.

They don't have drivers licenses, but the man does know how to drive. Again, his mother insisted he not get a license; she thinks he'd pass the test with no problem, but she's concerned about his reaction time, and more concerned about the rest of the drivers out there. You could see the pain in her face when she discussed her decisions about the driving and the grandbabies; they were hard decisions for her, and it hurt to have to make them.

The wife owns a 2-bedroom log cabin on her family's property out of town. The couple spends every weekend at this home alone. They do have an agency that checks on them, to make sure they have food, that the food isn't spoiled, and whatnot, but the rest they do themselves. There are lists in every room to remind them of the things they need to do to keep the house neat and clean.

That was Monday night; Kipp and I talked all the way home about future possibilities. Well, I babbled and he listened. You know how it goes.

Tuesday, I took Kiki to her pedi. Her diaper rash was just not clearing up, and it had developped blisters over the weekend. He said it looked like it had gotten bacterial, so she's back on an antibiotic. This one? Every 6 hours. Geez! We're lucky Kiki takes medicine so well.

We talked about testing her for celiac disease. I told him I'd already put her on a gluten-free diet and had seen improvements in several areas (not to mention her hair is growing back.... did I mention that?) He said since the blood test looks for antibodies, being on a gluten-free diet would most likely give a false negative if she does have it.

But this is why I like him (it doesn't hurt that he's flirting with Kiki the whole time.) He added, "Let me ask you this. Let's say we do the blood test and it comes back negative. Are you going to change her diet?"

Well. No.

"Exactly," he said. "If she's improving because of the gluten-free diet, why would you change it? And if she does have celiac disease, the only thing you CAN do is put her on a gluten-free diet. Now if in the future you need a diagnosis for some reason, like when she gets into school and you have problems getting them to give her gluten-free food, I will be more than happy to talk with them, give them a note, whatever it takes to ensure that she stays on the gluten-free diet."

Love him.

Next up, Kipp wanted her tested for diabetes. She's been peeing CONSTANTLY, and is always signing for drink. Kipp has diabetes, and excessive peeing always makes his radar go PING! PING! PING!

"Well," he said, "If we're going to test for diabetes anyway, let's go ahead and test for celiac at the same time. Might as well test her thyroid while we're at it."

Yep, love him. Not even any argument, just "Okay, let's go!"

The blood drawing was dramatic. They had to take it out of her arm, and didn't get enough out of the first arm, so we had to go to the other one for the rest. She was NOT happy. She cried and yelled afterwards, and I held her and comforted her, and just before we left, she stopped, smiled at the blood people and waved bye-bye.

Then snuffled all the way to the car. Poor darling.

Wednesday, we had our WIC meeting. She spent the whole time signing for a ball. I don't know why she thought the WIC lady had a ball, but she was insistent about it.
And then she had her ST, but her focus was way off.

Today, she had her OT, and her focus again was kind of off. For the first time ever, she actually turned her back on us and pretended we weren't there.

Now I love her OT. She's a fabulous woman, and she's been getting great results with Kiki. She tends to get boisterous when she's excited, however, and she often rubs Kiki's torso or roughhouses her when she's playing. Kipp and I don't really roughhouse with Kiki the same way; you can tell by the look on her face and her body language that she doesn't like it.

So I intervened finally and told her OT all of this. She apologized and explained that with most of her clients, exuberant and rougher feedback is often necessary due to their sensory issues. I said there was no apology necessary; she hadn't done anything harmful or anything. It's just Kiki is a different kind of kid; she responds quickly to praise, and she gets overwhelmed easily when there is loud noise or is surrounded by too much activity and motion.

Later in the afternoon we went shopping. My gluten-free pantry is getting bare. I remembered that the large grocery store in town here has a health food section, and I decided to check what they have. You know, because it's only 3 miles away, and the health food store I went to last week is like 15 miles away. Score! So much gluten-free stuff!! Yay!

And you know, now I don't have to drive all the way to another town and drive through busy big town streets just for health food. Hee! I say "busy streets" and make the woman in me who grew up in the Bay Area, CA, laugh like a school girl.

I'm spoiled, people. I'd rather drive through the woods to get to the grocery store than have to take highways and city streets. So there you go.

And that's all I have. Isn't that enough? Isn't that a lot?

Thursday, January 8, 2009

Hair Obsession

Okay. Last post on hair for a while. Promise. I know I'm being vain, and there are so many worse things, and I need to suck it up. BUT, just as an update, there's some fuzzy white-blond hair poking through one of the bald spots on the back of her head too. Yay!

But I had to share this because it tickled me. I told Bri this weekend about Kiki's hair loss, and that it could be permanent. "No!" she responded, "She can't lose her hair! How is she going to get a boyfriend??"

Bri is 12. Boys are important right now.

I reassured her that it wasn't certain to be permanent, and if it was, Kiki could wear a wig. This appalled her even more.

"She CAN'T wear a wig," Bri informed me. "How is she going to take a shower in middle school wearing a wig? Also, girls in school pull hair HARD. They'll pull her wig right off!"

These were things I hadn't even considered. Not knowing how else to respond, I just lamely repeated that it wasn't certain the hair loss would be permanent.

She thought for about a minute, and then smiled. "Well," she said, "we can always put her on Match.Com."

You know, we all obsess about the important stuff. It runs in the family, obviously.

Monday, January 5, 2009

Gluten Free

So I went to a local health food store on Friday (I think there are maybe 2 in the area.) It was just like walking into a corner of California. Oh, it made me miss Trader Joe's. I think there's one in KC. We need to make a road trip!

Of course, health food is at least twice as expensive as regular crap, but it's for a good cause so I'm not complaining.

Kiki's been gluten-free since New Year's Eve now. As far as immediate effects, last night when I was giving her a bath, I noted her skin is now smooth! It had been so bumpy on her arms and legs for a while now. The doc had said it was eczema, and I'd been putting cream on her like crazy with no effect. Less than a week of gluten-free, and her skin is smooth. Woot!

As far as her hair goes, she's got two more small bald spots on the top of her head that she's just developed in the last few days. But, right in the front where she'd started to recede first, there's a fine, white-blonde fuzzy patch of hair growing in. Yay! I don't know that this is a result of the new diet; I know that with alopecia, the hair starts growing back in as spontaneously as it started falling out. In any case, hopefully we're turning a corner.

I've started counting her calories because she eats like a little horse. I've been telling the docs for almost a year now that I've been concerned about her slow weight gain and the fact that her growth has slowed so awfully much. They keep assuring me that it's just because she's so active. Which is true, but I wonder sometimes if they also think she's a picky eater. And she isn't! She eats lots. I've pegged her at about 900-1200 calories a day, which is just about right for a toddler (that I can glean from the 'Net, anyway.)

Hopefully, this diet will fix all that too.

Thursday, January 1, 2009

Taking the Bull by the Horns

My Grandma was the type of person who paid close attention to what doctors told her. She acted very dutiful and docile to them. And then she would go home and exhaustively research every prescription they gave her and every diagnosis they gave her, and then she would decide for herself which way she was going to treat it.

She was very big into holistic healing, believing that doctors tended to be too focussed on their pharmaceuticals and the symptoms rather than the big pictures. She made her own herbal remedies. She believed in vitamin and mineral supplements. She believed that diet affected us, environment affected us, mental states affected us.

She spent a lot of time pushing articles on Mom and me throughout her life, articles out of several health food and New Agey health type magazines, as well as more mainstream mags like Reader's Digest and whatnot. She didn't nag so much; she'd just cut out the articles, hand them to us, and then leave it up to us from there to read it and do something about it.

Mom told me that after Grandma died and she was going through Grandma's things, she found a whole pile of clippings, and magazines with pages marked, and notes to Mom about how she needed to read these things. So Mom read them, really read them, and she was amazed that Grandma had noted that Mom was stressed, overworked, overtired, possibly depressed, and that all of these articles were tips about how to address those issues, how to make her healthier.

My point here is, I guess, that having lived with my Grandma most of my life, I have this habit of researching. I don't just take doctors at their word. I have to know more. I have to know everything. And luckily I have the Internet, where Grandma used to have only the library and her magazine subscriptions, so it's so much easier for me.

Also having been raised by my Grandma's health consciousness, there's a very ingrained part of me that believes every health condition is an effect; there is a cause, you just have to find it. So it doesn't sit well with me when a doctor tells me, "No one knows why it happens. It just does sometimes." Just because there's no emphatically proven cause doesn't mean there isn't one; it just means it's not important enough or lucrative enough to research.

So I felt guilty about Kiki's alopecia. I cried all day. I felt like I had done something wrong to cause it, or that I hadn't done enough to stop it. I felt sorry for both of us.

And then Grandma's genes kicked in, and I went Internet surfing, and I found a link between alopecia arreata and celiac disease. And then I found a link between celiac disease and Ds. And then I read the symptoms for celiac disease, and this little bell went "Ping!" inside my head.

Now maybe I'm grasping desperately at straws. Maybe. All I know is that now that I'm taking some kind of action, I feel empowered. I feel like if I can put up some kind of battle, then even if she does lose her hair, I will know I did everything I could.

So as of dinner last night, she's on a gluten-free diet. It turns out there are a couple of health food stores in town, and one of them has a huge selection of gluten-free products. I will be checking them out tomorrow.

Being gluten-free is certainly not going to hurt her, and there's such a huge chance that it could actually improve her health, decrease her chances of developing autoimmune thyroid disease, and maybe even get her hair to grow back -- you know, we have to try it.

I feel so positively charged up right now, I don't even know how to express it. Thanks, Grandma. I love you and miss you so much.

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