It's Not Fair.

We thought it was a stubborn yeast infection, but then 12 days of Diflucan didn't cure it. Then tests were run, and we found that there was no yeast present. How I wish it were yeast. Yeast is easy. Natural remedies and prescription drugs for yeast are plentiful.
There's no cure for Lichen Sclerosus. It's chronic. It's not contagious, and no one knows what causes it. It's been linked with autoimmune diseases, but is not technically in that class on it's own. It causes not only the common symptoms associated with yeast infections, but also thinning of the skin, which causes fissures, which then lead to scarring.
In the short term, this means several weeks of strong steroid cream daily to suppress it. Then those meds will be used regularly, but less often, to keep the symptoms away . She'll have the condition for at least several years. It's said to often go away after puberty. Something about the hormones. I was okay with that, until I read that it's about 85% likely. That's not nearly likely enough for me. A 15% chance that she'll instead have it for her entire life just isn't an acceptable statistic to me, the mother of a five year old with LS.
In the long term, regardless of whether she "outgrows it" during puberty, she'll have to be monitored more closely for skin cancer for life. They don't know for sure if pediatric cases are at higher risk for squamous cell carcinoma, but adult cases are, so we'll have to keep a watch on her skin just in case.
And I know there is some scarring already, but I don't know how much, but the severity will determine whether she'll ever be able to have a normal sex life. Right now if I had to guess, I'd say she's not severe yet. If the scarring is not yet significant, and the treatment keeps the condition under control, that shouldn't be a problem.

Technically speaking, the prognosis is good. I've read that over and over. I want to believe it, I really do. But that 15% keeps popping in my head, and I can't help but to worry about what happens if she's in that 15%, or if it's already progressed enough that it'll cause life-long problems regardless.
It's not fair. Why does my five year old have a chronic disease? And if she's got to have one, why can't it affect her pinky toe? I feel so sorry for her, and am afraid to think about the future too much, if she's not one of the luckier ones.

When I first read about it, I wasn't too concerned. I thought, "oh, like yeast but we treat with steroids instead of diflucan. Okay!" But it really is nothing like that at all. It just has similar symptoms.

So please, please pray for Mikayla. I want to dream big and ask everyone to pray for total healing, but I'm too afraid to get my hopes up. At the very least, I want the medicine to ease the suffering, and I want to be able to stop freaking out about it. I want the tightness in my chest and the lump in my throat to go away. I want to be able to focus on that 85% instead of the 15%. But mostly, I just want her to be okay.

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I need to piggyback something on here. I just realized that I never mentioned something else very big. Rewind for a moment to early December. Xander finally got his tests done, and he does, in fact, have kidney reflux. The lefty is about 2/3 the size of righty, and the reflux in the left ureter is a grade 4. The scale is 1-5, 5 is the worst. He's currently on antibiotics indefinitely, but I plan to go back in to request surgery instead. The testing was not fun, but not as horrific as we'd imagined. We'll go through it again in the fall before we leave for Germany.
I was just adding labels to some entries, and noticed that I skipped right over that, and went straight to talking about him needing a urologist in Germany. Well, that's why.

Also, Aaric has an appointment later this week with our doctor to discuss getting him checked out for ADD or SPD or anything else that could be causing his problems. I also go to my first therapy session, to see if we can teach my brain how to cope with ADD better. I'd prefer to stay drug-free if possible.

And totally not what's important right now, but for the record, this means that we've got to submit even more paperwork to our good friends in the Army, because Mikayla requires special medical care, and Aaric might too.

Mikayla is not impressed with Baptist traditions

She's announced a few times recently that she wants to be baptized. This is on the heels of a little girl in her Sunday School class being baptized, and Christmas, when when was offended to have not been offered cracker and juice during the Christmas Eve service. So I had a pretty good idea that she just thought it seemed like fun and hadn't actually put a lot of thought into it. Still, she knows all the "right" answers to all my questions about why Jesus came. She's a little iffy on sin, but I blame whatever Sunday School teacher did those beaded bracelets, because, you know, the "dark" bead is for sin, so she tells me sin is dark.
So, in the car, we have a little conversation.
Me: Mikayla, what is sin?
Mikayla: Sin, is, um, dark. And it makes so that you can't see any light coming from your heart.
Me, wondering if she has any idea what on earth she's talking about: But what IS sin?

She sounds confused for a bit so I set her straight on sin being anything that God doesn't want us to do.
Then I ponder what I can ask to really get inside her head.
Me: Mikayla, why do you want to be baptized?
Mikayla, excitedly: So I have that dinner that you can't have until you get baptized!!

FOOD! Glorious food! I should have known it was all about the food.

Using her words

Sometimes it's a good thing, sometimes, not so much. Mikayla has been quite quite quote-worthy in the last couple days though.

"Mama, can I have more cake?" "No, not now."

Maybe 15 minutes later, she's eating cake and my brother asks her if her Mama said she could. "No, but earlier she said 'not now." You just really can't argue with that logic.

After an 8 hour car ride, she wants more cake. I say no. I find red velvet cake crumbs scattered on the floor right below the counter where my plate of cake sits. I tell her she has now had her cake, and won't get any tomorrow when Aaric and I get some. "You won't remember!" she yells. HA! If there's anything that I'd remember, it's telling my kid that she can't eat MY cake. I'm protective of my sugary treats. Of course, today she claims that I'm making all that up, it never happened.

She also told me last night that she was very frustrated with me. I'd done something to offend her, I'm not sure what. Most of the evening is a haze - we got in at 10 and unloaded and unpacked and put kid-sized table and chairs together until we finally went to bed at 2 am. All I know for sure is that I told her she wouldn't get cake.

Then she was in time out and declared, "I am M-A-D at you!" Aaric said, "Hey, that's good spelling Mikayla!"

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During the drive home, I asked them how they enjoyed their visit to GA. We were there for 2 weeks. In part, I was hoping to help them come up with a summary of the trip so they'd have something prepared for sharing time in class. I started by asking what their favorite part of the trip was. I expected answers like, "playing with cousins," or maybe "opening presents," or "going to The Nutcracker." But no, Aaric says, "Well, it may not have happened THIS trip, but my favorite part is the gift of Jesus." Mikayla's favorite part was playing with Annalisa. So, then I try gifts. What was their favorite gift? Mikayla says her Bible, and Aaric says, the gift of Jesus. At that point, I start wondering just what they've done that they're trying to compensate for. They're obviously trying to avoid being struck down, right?

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So, yeah, I put together a table and chairs set last night. THAT was fun. First off, the box has lots of those big flat pieces of styrofoam. You know that scene in "Elf" where he's greedily grabbing the chewing gum off of the street and cramming it in his mouth. That was Xander with the styrofoam. Grab a piece break it off, stuff it in. Mama turns and says, "Ew! No Xander! Yucky! Spit it out, give it to Mama!" He laughs, spits it out and reaches down for more. All while I'm using that stupid little allen wrench to tighten the bolts on a chair. Over and over and over. So I get down his little cannister of puffs (those Gerber star shaped things) and tell Mikayla to feed him those. He dumps a ton of them on the floor and gobbles them up, then goes back to styrofoam. I take all of the styrofoam to the trash, other than the tiny little pieces covering the floor. He keeps going to the trash, digging for more of it. When he finally gives up on that, it's because he's decided that this putting together gig is a job he can handle and keeps trying to pry the allen wrench from my hands. I finally finish one chair and he pushes it over to the counter, pushes it up, and climbs up to try to get cake. I seriously considered taking the chair back apart.