Thursday, October 22, 2009

We Need House

No, not a home...we have one of those. We need House, M.D., to help all the pediatricians, lab folks, and surgeons figure out what is wrong with my son. Because no one, and I mean no one, knows what is going on in his tiny little body.

So, about five months ago I wrote a post about my son's refusal to grow. Well, guess what? Over a year after his second surgery, he is the in the second percentile...still the exact same size as he was at 10 months of age. The good news is that it means he doesn't have to have anymore surgery for a while, because his brain isn't outgrowing his skull. This was confirmed with a check of his optical nerve, and there's no pressure, so he doesn't need to come back and see the surgeons for a whole year (barring any big changes or a problem at his eye check-up in 6 months).

The bad news is he isn't growing, period, and no one knows why.

He's been tested for CF, and when I go to his appointment on Tuesday with his new ped group, we'll have to get a referral to a pediatric endocrinologist to check his pituitary and thyroid, I suppose, but I'm just afraid he'll stay this way forever (and don't tell me that doesn't happen, because it does). I'm just afraid he'll stay this size or at this developmental level, or both, and that isn't the life I want for my son.

More appointments this coming week (regular pediatrics and another OT appointment), and hopefully we'll find a good endocrinologist for him. :/ Keep the little guy in your thoughts and prayers, please.

Little Monkey's diagnosis

Remember Little Monkey? The sweet little angel baby with the skull problem who, 30 months ago we thought was going to be the big medical challenge for our family? He's almost 2 now, and still a sweet little love.

His beautiful wispy curls hide the scar very well, and he's fiercely happy, which is great. He climbs well, can carry a ball upstairs (in order to throw it down, chase it, and bring it back up) and signs for "milk," "more" and "food." I couldn't have asked for a more easy-going and laid-back kid.

Which, it turns out, is sort of a problem. On Tuesday, he and I trekked out to SW Portland for his evaluation by an occupational therapist. I know you're all wondering what could possibly be wrong with him, right?

Well, to start out, he doesn't talk, not really. When we first moved to Portland, he had NO words, no signs, and could communicate at all. Now he has "che-che" (leche, or "milk" in Spanish), "up!" and "Papa!" that actually mean something. He parrots a little now, too, which is awesome (before he would just sit in contented silence). Still, at 23 months of age, he's speech delayed.

We're still trying to schedule an evaluation with a speech pathologist, but the OT planned to check on the speech thing.

He's also not eating, like at all. He still guzzles Pedia-sure like he's afraid we're going to run out of it. For days at a time he'll refuse any solids, and then he'll be willing to eat some banana or bread (crackers, bread, chex, cheerios). However, he doesn't chew, he only sucks, so if he gets too much in his mouth at once, he gags and either throws up or aspirates. Apparently, he doesn't chew because his jaw-muscles aren't strong enough. He can bite you, and hard, but prolonged chewing is hard, and hurts, so he doesn't do it. This may have something to do with his lack of speech as well, I'd guess. We were given a little tube-toy to try and teach him to chew, and encouraged to work on it with him, since the very concept seems to elude him.

Then, as the lady was looking through her list, she realized that he has a few indicators of an autism spectrum disorder (mainly his fascination with ceiling fans/wheels and his silence). The boy does LOVE things that spin, and he is super quiet, so I had known they would be looking for this. Still, when the therapist was showing him one of those hit-the-ball-with-a-hammer toys, he copied her on the first try and then looked up at her to make sure he'd done it right, inquisition all over his face.

"Well, he's NOT autistic," she exclaimed, laughing. "Good," I thought. "So what is he?"

Turns out, the answer is "complacent." I mean, he is delayed, but that's sort of expected after his surgeries, but he should be catching up. The reason he isn't? It's hard, requires a lot of effort, and he's quite happy how he is, thank you very much. "Do you know any second-born boys?" she asked me, and I laughed, thinking of Needlenoggin and Tuffy. "Do you see a difference between them and their older siblings, especially sisters?" Again, I laughed. Tuffy's sister is very driven and accomplished, with a doctorate degree and she's going to law school. While not quite as impressive, *I* am Needlenoggin's sister, and have 2 kids, work, write, do art, am a wife and a full-time grad student. I went to Berkeley.

"Yeah, us older girls are a bit more driven," I admitted. She went on to explain that he chooses the path of least resistance (like spinning toys or bouncing a ball) because he can't make a mistake with them, and they make him happy. Stacking, drawing, whatever else, all take more effort, and he can fail at them, so he chooses things he's comfortable with instead.

"He'll work if there's something he really wants" she went on, which explains how and why he gets all worked up when I won't let him open or shut a door he wants to play with, but he works for happiness; either for him or for Tuffy and I. He'll do his "besos" trick (kissing us) because we laugh and squeal and smile and say "good job", and if we're happy, he's happy. So, we have to make sure he knows how happy we are when he stacks blocks, learns a new word or sign, or does something he's not comfortable with.

After discussing how well this complacency was going to work in school and being told he'll probably need external reinforcement, like praise and perks when he does well to motivate him, the OT said something really important:

"Crazy driven people, as adults, contribute a lot to society...medicine, law, what have you. In order to live whole and complete lives, to be truly fulfilled and happy, they need to LEARN to relax, and let go of perfectionism. Easygoing people on the other hand, are happier, but can end up lazy if they don't learn to work. Your son NEEDS to learn to chew, eat, talk, etc, but he'll do it if it makes him happy, or you or your husband or your daughter happy. So make it a game, and show him that doing these things makes life better for him."

I liked that, and we scheduled my boy for every week for the next couple months. He'll be going in for a speech eval as well, probably in November, and then we came home and packed up for his neurosurgical/plastic surgery/eye appointment on Thursday.

Sitting at the dinner table, I was telling Tuffy all about the chewing games we're supposed to work on, and how worried I am. He reached into a box of crackers, stuck one half of a Wheat Thin into Little Monkey's mouth, and chucked him under the chin. "Bite," he said as the cracker snapped in half. A few more times, and my son will now bite crackers in half. In two hours, Tuffy taught him what biting was, if not that he should actually chew his food! Progress, right?