Despite the fact that Jack scored in the 2nd Percentile at his physical therapy evaluation for his adjusted age (meaning that 98 percent of 4 month old babies are doing better than he is), Early Intervention has yet to get their act in gear and get us into their program. So we’ve been paying for PT on our own.
We had a long conversation with the Physical Therapist we’ve hired for Jack. She is very, very good and specializes in working with preemies. She told us on Monday that Jack is about 1/2 to 1 month behind in all of his physical milestones for his adjusted age. Next week Jack turns 8 months old (how the hell is this possible!) or 5 months old, you pick. But he’s really only functioning at a 3 month level.
It’s scary to type that. It’s also scary because we’ve been told that he’ll get even further behind as the year goes on. We’re modifying our expectations (that’s all we do these days), if he’s sitting up at 7 months adjusted I’ll be over the moon.
The future is a freaky thing right now. We’ve got an almost 8 month old/5 month old that can’t role over and terrifying medical fears lurking in the back of our heads. BUT we’ve also got a super smiley, happy baby. We get that we’re lucky. We really do.
But we can’t shake our fears.
Preemies most often get a devastating diagnoses at around 2 (ish) years of age. This is when doctors can really determine: Does he have severe mental deficiencies? Does he have cerebral palsy? Is he going to have severely impaired vision or hearing? The odds are on Jack’s side that this won’t happen, but it does take our breath away that he is at risk.
The next big milestone diagnosis after age 2, are around 6 or 7 years of age. Doctors and therapists can start to determine the “minor” disabilities that might exist as the result of prematurity: psychological disorders, seizures, low IQ and vision and speech disorders are the big ones, the lingering, “curse(s) of the nicu…”
Knowing all of this, we’re very optimistic about Jack’s future. He’s a very happy boy. He’s big into making raspberry sounds and likes screeching. A lot. He makes eye contact and appears to turn to us when we call him by name. He likes banging his rattles around, and is clearly really responding to all of his therapies. And he’s big. HUGE even.
We hope we’re never going to have to deal with a bad diagnosis, devastating or minor, but the reality is that we could. These fears make it increasingly complicated for us when well meaning people say things like “he’s going to be just fine.” Because we think he’s “just fine” now. But if you’re talking about all the big scary stuff…well, if you have a working crystal ball, I’d like to borrow it…
