In early November, we bring Alex to Yale for his first checkup. By now, the injection has become routine—slotted into a 9 p.m. Nickelodeon commercial break—and my family is already noticing changes in Alex’s body. His muscle tone is visibly improved, and his pants are suddenly too short. In the waiting room, I jot down a few things to mention to the doctor: Alex’s appetite is uncharacteristically voracious; his growth pains are intensifying; and his hair is dry and brittle.
The room used for measuring height and weight is wallpapered with drawings by patients with a variety of metabolic disorders. One depicts a small, sad-looking stick figure labeled “before” and a taller, much happier stick figure labeled “after.” Alex stands to the left of this, back to the wall, grinning in anticipation of his “after.” The nurse scribbles on his chart and ushers us into the examining room. Alex is anxious because while we swear he’s grown at least 3 inches, we’re not positive because we haven’t measured him yet—psychologists recommend we don’t measure Alex at home.
“124.8 cm,” Genel announces finally. “That’s just about 4 feet 1, about an inch and a half in three months.”
“Wow,” says my mom, extrapolating 6 inches of growth a year.
“That’s all?” says Alex. “All those shots for one measly inch?!”
Genel warns them not to take the results too literally. “These are positive results,” he says to Alex. Then, turning to my mom: “But it’s too early to attribute this response to the treatment.”
Indeed, there’s no telling what the results of Alex’s treatment will be; even at $20,000 a year there are no guarantees. Some kids end up in the 60th percentile, while others never crawl above the fifth. I’m still left wondering why we’re rolling the dice on a healthy kid, particularly when the benefits of a few extra inches are unproven and the risks are unknown. At the same time, I’m rooting for results—and we leave the doctor’s office cautiously optimistic that the treatment is having an impact. We’re further reassured three months later, in early February, when Alex’s next official measurement comes in: He’s 4 feet 2 and a quarter inches, a full 2.5 inches taller than he was six months earlier when he began treatment.
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