Small side of tiny

One year into raising a special-needs child, we're realizing the worries never go away. Sometimes, they're more prominent than others. Sometimes, they rotate. But they're always lurking, ready to leap up, grab your lapel and say, "don't get so comfortable."

We're still not sure what to do about Hope's weight. She's about 9 pounds at 12 1/2 months and is stubbornly clinging to the 10-15 percentile in the CdLS growth chart. It's a chart that is heavily skewed toward small, so she is on the small side of tiny.

So far, we've erred toward caution and non-intervention because her height and weight are proportional. But the experimentation never stops. Eager to squeeze in a few more calories with every feeding, we've added coconut oil, butter, heavier formula, and myriad combinations in between. Our kitchen sometimes resembles a mad scientist's lab, with carefully calibrated concoctions prepared with blenders, heated, then cooled oil and syringes. This week, we're beginning to try to wean her onto Pediasure, a calorie-rich milk substitute that tastes a lot like rich, chocolatey Ovaltine.

Often, the experimentation works. Others, no. The frustration comes with the vicissitudes. For weeks, Hope will eat like a linebacker, devouring bottles and fruit with frightening relish. Then there are stretches like last week: Little interest. frequent spitups and tiny triumphs if she finishes half a bottle.

Few variables change to explain why she's just not digging her chow. So we fret and obsess. Is she constipated? Did we feed her too much chicken? Is she dehydrated? How much did that diaper weigh? Should we cut back on the oil, sacrificing a few calories in the hopes that she might make up for it by drinking more formula?

There may not be an easy answer. It's a common issue for those with CdLS. The metabolisms are lightning quick. The appetites come and go. The digestive systems are problematic.

Dr. Spitenup encourages the long view: Slow and steady gains, without getting caught up the daily fluctuations. But that's often easier said than done. So we ponder, second-guess and hope for the best.

Meanwhile, we're happily watching her blossom as a boom, boom, lickety-split player. We finally were able to capture the elusive prey at play on the exersaucer. Usually, she freezes the moment a camera emerges, but we got lucky.