Wednesday, June 27, 2012

In Which We Learn to Adapt (Over and Over and Over Again)

So I guess it's time for me to put on my big girl pants because apparently nothing's going to get easier any time soon. We're still waiting on the details for That-Which-Shall-Remain-Unnamed (psst: it has to do with Ren's back), and we are only now getting settled following the numerous pediatrician changes after our doc left the practice back in February. Then last month, we found out that the head of Pink P's school was leaving. And today? Today, I learned that our beloved OT guy will go in August. I'm terrible with change. Doesn't anyone take this into account when making big life decisions?

The unexpected departure of Miss Jane at Pink P's preschool just convinced us to go ahead and move Pink to Sky's school. Both kids are totally excited, and it will actually cost less and mean less chaos at morning drop-off. So, it's probably a good move in the end. Still, it wasn't necessarily my plan, and it turns out I'm totally inflexible about certain things. Who knew?

Dave, our OT guy, has been with us from the beginning. He's provided a lot of insight thanks to his twenty-plus years of experience and the fact his 7-year-old son has PDD-NOS. His ability to avert a meltdown and communicate a lesson is amazing. Plus, he taught Sky how to tie his shoes in twenty minutes. Twenty minutes! We've been hanging with Dave for one or two hours a week for the past eighteen months, so this particular change is going to be hard for both Sky and me.

We will adapt. Somehow we always adapt.

Good thing, too. Because today Stow had an Early Intervention eval. The good news? His fine motor and problem solving skills are off the charts. The less-good news? That sweet boy qualifies for speech, physical, and developmental therapy. It's still early and there's a strong chance a lot of the delays can be attributed to a combination of his super-laid-back personality and the fact he's the third child. (I mean, who can talk when it's impossible to get a word in between Pink P and Sky?). Either way, we're on it early this time. And we'll learn to adapt. We always do.

Friday, June 22, 2012

Homemade Ice Cream Fail #1

Okay, I'll admit it. I thought I would have soy ice cream success on the first try. And, if you count the fact that Ren liked it and Stow was willing to eat it, I was partially successful. Of course, Ren will eat just about anything. If it's stale, slightly moldy, or just a tad too alive for my taste, he's okay with it. Given that he eats more than the rest of us combined, it helps that he eats what no one else will (it also doesn't hurt that he's got a stomach of steel). And since Stow has been on a pretty steady diet of all-natural and completely unseasoned veggies, fruits, tofu, and meat, my ever-so-slightly sweetened soy ice cream was a huge hit with him.

I started my ice-cream-making venture (like I start many of my ventures) with an Internet search.  We didn't have any eggs or powdered sugar, so I went with the recipe that called for soy milk, tofu, vanilla, and syrup. Ren and I had misgivings about the syrup but decided to stick (hee, hee, hee, "stick") with the recipe. (For the record, Ren and I were right).

On the bright side, the new ice cream maker worked like a charm. Twenty minutes after I put the blended mess of tofu-like products into the chilled bowl of the maker, voila! Ice cream. But Sky and Pink P weren't having it. In Sky's estimation, "Yuck! It tastes like tofu." Apparently, they like tofu, but not when it's supposed to taste like ice cream. Both gave their half-eaten leftovers to Ren--a first in the history of, well, ever.

So, my initial attempt was essentially a fail, but it totally reminded of my favorite post-hike, pre-hot spring restaurant, Okamoto Tofu. And Okamoto Tofu reminded me of Kurokawa Onsen (onsen=hot spring). And that kind of depressed me, really. I mean, look at these pictures. 

Oh. My. Gosh. The food. Yum.

And then, there's the ice cream...

Now that's good tofu ice cream.

Next time I use the ice cream maker: more sugar, less syrup, and maybe a nice hot spring.

And, if you're ever in Okuni in Kumamoto prefecture, you have to check out Okamoto Tofu (and they're not even paying me to say this, though they totally should).

Images from Okamoto Tofu-ten

Friday, June 15, 2012

Hand Foot Mouth Elbow Knee Tummy Butt Disease

Nothing says summer like a highly contagious illness. Some families take vacations to the beach, but we just get sick. This usually ends up saving us a lot of money (as long as no one lands in the ER). Last year in June we went to the ER three times, so that was not as cost-effective as I'd like. Pink P was introduced to the wonderful world of asthma (and by wonderful, I mean totally crappy), and my gall bladder decided to move to Mexico. It sucked and we were hoping for a much quieter summer this year. And at first, this summer vacation seemed better. The kids various life-long ailments were under control, I was no longer spending every waking hour on my dissertation, and Ren's back was on the mend. For a brief, shining moment, all was well. My first-sign we were in trouble should have been Ren's back (and technically the trouble started before we realized it, so there was really no brief, shining moment--you can let a girl fantasize, though, can't you?). The day before my defense, he "re-irritated" it. (BTW, "re-irritated" is my denial word for "he completely screwed it up again"). In his defense, he didn't do anything he wasn't supposed to be doing. His back is just bad. Very, very bad. We are moving headlong toward another, much bigger, surgery. (But, I don't want to talk about it right now. I'm in denial.) That thing I am denying is a pretty good sign our summer plans are shattered. But just in case I had delusions of salvaging even the tiniest shard of hope for a "normal" summer, the boys came down with Hand, Foot, and Mouth Disease. (I love that just the mention of HFM makes people feel phantom pains and start to see spots. Just like saying "pink eye" causes people rub their eyes. Oh, and CHICKEN POX!) Anyway, where was I? Oh, right. Stow and Pink P went to a birthday party for a friend, and it turned out that the birthday girl had HFM. Sigh. I'm totally not one of those parents who gets worked up when someone's sick kid hangs with mine. They are all little petri dishes and the world is full of germs, so I've accepted the fact they're going to get sick. Oh, but I wish Sky and Stow didn't get HFM. First of all, Sky couldn't get over how someone could possibly do such a thing to him. He ended up missing most of his week at hiking day camp and lamented his plight daily by recapping (quite dramatically, I might add) how his brother and sister had so callously brought such awful germs home to him. Sky's week of quarantine was especially rough on Ren. But the worst part was poor Stow. The HFM virus caught up with him when he was already battling a double ear infection, so he got the worst case of HFM I've ever seen (granted, I've only seen it a couple of other times in other people's kids, but still...). His hands, feet, mouth, arms, legs, buttocks, elbows, knees, neck, and ears had red spots that became little blisters that turned into ginormous blisters that that then erupted into angry-looking red sores which eventually scabbed over. (Stop reading here if you have a weak stomach or are particularly sensitive to rash pictures--though I guess that last sentence might have done some of you in already. Wimps.) Awww, what a sweet sleeping bab.... Wait! Agh! What's that? Hurry up! Do something! The aliens are trying to get out!! ... You get the picture. It was ugly. It was painful. And it lasted a long, long time. We couldn't take him anywhere because even when he was no longer contagious, no one would believe it. I mean, look at him: So, two weeks into summer vacation, and I am pretty sure it will not go as planned. Not even a little.

Thursday, June 14, 2012

Got Milk?

Well, it's taken some time, but we've finally embarked on the path toward biomedical/dietary interventions in hopes of lessening Sky's behavioral issues and Pink P's allergy attacks. Many parents (and some researchers) have found that casein and gluten for kids on the spectrum can cause something akin to euphoria. If you know my kids, you know they really don't need any more of that. So off we go...

Step one toward being gluten and casein free (GFCF): eliminate all dairy. As soon as I committed to doing this, I suffered one of my week-long grilled-cheese-on-rye cravings (perfect timing). We started with dairy because it should be easier to remove from our daily menu and because the results of the diet change are usually more apparent quicker than with gluten-related changes.

To begin, I explained to Sky and Pink P how and why our diet was going to change. I listed foods they could no longer consume--milk, chocolate, cheese, yogurt and ice cream--and then pointed out that we could find some fairly tasty alternatives. I didn't mention all the foods with milk as a secondary ingredient--pancakes come to mind--because I didn't want to trigger a panic meltdown. I still haven't pointed out that pancakes are off-limits for fear of incurring their displeasure during the first weeks of this process. At some point, I totally expect Sky and Pink P to be displeased, but not quite yet.

Then I took them with me to the store and let them choose milk-alternative drinks and yogurt-alternative snacks. We even bought "Italian ice" (a.k.a ice with flavor) because there was no way I was gong to spend $8 on a quart of coconut milk ice cream (incidentally, Ren's impulse buy of an ice cream/sorbet maker at Costco a couple of months ago--it was on sale--looks a bit like premeditated genius right about now). Since milk and cheese have always given Pink P eczema, the kids are already familiar with milk alternatives. They even like some of it.

So far, good. I just need to remember we are now dairy-free and be vigilant when we are out. I also need to speak up the next time Big Sissy visits and wakes up early and makes pancakes because she forgot to read the label on the mix and had only learned about the dairy-free thing 12 hours before.


Wednesday, June 13, 2012

Maybe I'm a Tad Cynical

Pink P is going to try day camp this summer. The application form had a list of questions intended to help the camp counselors know the kids a little better. I toyed with filling it out myself (so I could just go ahead and mail the darn thing) but then decided to play by the rules and ask Pink P to answer them instead. It turned out to be a very illuminating experience. Here are the questions and her answers:

Q: What is your favorite color?
A: Pink (Duh.)

Q: What is your favorite sport?
A: Basketball (Wait. What? I'm pretty sure she's never played it. Or even watched it for that matter)

Q: What's your favorite thing to do in the summer?
A: Play outside (This seems like a pretty normal answer, actually...)

Q: What's your favorite food?
A: Strawberry shortcake (Me: Have you ever eaten strawberry shortcake? Pink P: No. --Alrighty then, next question.)

Q; What's your favorite place?
A: Home (Awww...that's sweet. Lazy, but sweet.)

Q: What's your favorite story?
A: Any story about princesses. (Again, duh. And have you read Cinderella Ate My Daughter? I totally agree with Peggy Orenstein that there is a princess-brainwashing epidemic--my words, not hers--among preschool girls, and it's scary!)

Q: What's your favorite animal?
A: Unicorn (Darn it! The whole unicorns-aren't-real-animals discussion apparently didn't go very well after all.)

Q: What's something that you're proud you have done?
A: Hug mommy. (Translation: My kid's an underachiever who may or may not be easily preyed upon by child molestors. Awesome.)

Monday, June 4, 2012

No, Really, I Have Taken These Children Out On My Own Before, Really

I recently found a family doctor who knows a thing or two about ASD, asthma, and allergies and the relationship between them. She's willing to talk to me about biomedical interventions, alternative vaccination schedules and antibiotics as treatment of last resort. She's working to help me connect the dots between several of Sky's health oddities as well as between what is going on with him and what is going on with his little sibs. These all sound like logical issues to address, but the fact is, it has been nearly impossible to put together any type of wholistic plan of treatment because there are actually very few primary care physicians who can offer more than the most superficial support.

So it's great, and I feel a little like a giddy teenager in love (only with a tad more middle-aged pessimism) whenever we go to see her. The only catch: her office is 40 minutes away. So now whenever we go to the doctor, it's more like a day trip than a simple errand. It wouldn't be a big deal if I could just remember this before we leave the house. Today, for example, it wasn't until we got to the doctor's office that I realized I had no snacks, no pacifier, and no short-sleeved change of clothes for the baby and no reasonable means of occupying Pink P. Sigh. To make matters worse, despite the long drive, neither Stow or Pink P fell asleep on the way there, so they were both super grumpy.

First stop, Pink P's new allergist. Now, I know you're going to tell me I should've anticipated this (though, you should probably know me better by now): The allergist wanted to do allergy testing. I know! Can you believe it? Crazy! Pink P had blood tests when she was two, but now that she's four, she's old enough for a skin test. So, she had to do one, even though I hadn't prepared her for the possibility with preemptive bribes and social stories. So, of course, she panicked, but before that, Stow had a diaper blowout and I discovered that all I had in the diaper bag was a onsies that is too small and a long-sleeved T-shirt. So while trying to deal with Stow slime, I also had to attempt various bribery techniques (because, despite the fact the nurse and the allergist were also in the room, they apparently had No.Idea.How.To.Calm.A.Child who is about to get a scratch test). In the end, Disney Jr. on my phone and promise of a new toy pony did the trick, but not before I received several disapproving looks from the nurse. (I was feeling like a pushover until the scratch test yielded large, extremely itchy welts on Pink P's back. Then I figured maybe she deserved a new pony.)

Next stop, our new pediatrician. Since we were going to be in town anyway, I'd decided to get Stow's pesky cough checked out. Turns out not only did he have severe bronchitis, he also had a raging (as in bubble producing) ear infection. You know it's bad when the doctor says, "I don't think we need to hospitalize him, but..." (Would it kill you to have a fever or be a little fussy, Stow? I know it'd help me take you to the doctor before you've managed to get yourself deathly ill! Sheesh.) Besides the cough and the ear infection, Stow also managed to produce a case of hives during the 10-minute drive from Pink P's allergist's office to the pediatrician's. But then it went away. And came back again. And went away again. And we still have no idea what caused it.

By the time we got home, we'd been gone five hours. It felt more like an eternity.

Friday, June 1, 2012

To My Youngest on His First Birthday

Well, it wasn't quite the first year I imagined for you. You came right on time and at a whopping 9 pounds, 9 ounces, a mellow and peaceful guy who continues to amaze me with his belly laugh and his Zen vibe.

I'm afraid we haven't been so good at being Zen in return. There were the hospitalizations (Pink P and Daddy) and the surgeries (Mommy and Daddy) and the great back saga (I promise I will never again ask your dad to go on a Cub Scout camping trip--it was just one night. Sheesh!). And there was Mommy's dissertation defense (and the insanity leading up to it) and big-brother meltdowns. There's nothing Zen about a Sky-rific tantrum, so I'm sorry about those. And about all of the tests you had to go through when you started losing weight and running fevers.

It was kind of a crazy year, now that I think about it.

But, we made it! And now you're one and 26 pounds! You started rolling, scooting, pulling up and crawling all at once, and now you're cruising and ace with a sippy cup. I love how much you love your big sibs. I love your ingenuity and your positive attitude as you employ your stealth ninja skills to break out of the various enclosures we create to keep you safe. No whining for you! Just trial and error. Thanks for playing so gently with all that fragile stuff you could reach before we figured out you could reach it and after we figured it out but were too lazy to move it.

You've always been unexpected. The one who fills us with great joy. Our man of peace. The one who makes us whole.

Thanks for a great first year, even if the rest of us screwed it up a bit!