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…
I think all parents have to deal with a “bad diagnosis” at some point. Premie or not, every person is different, and every child is going to have something they must face in their life. That is just life; you have you done everything you could have to ensure Jack got the best life he could. The world is not perfect, although it would sure be nice to make it so for our babies, huh?
I don’t get to see you enough and so I’m not able to tell you enough how much I admire you for everything you are putting into giving Jack all of the emotional and physical support he is getting. How do you do it? I can only imagine the worrying and wondering you guys do in the face of all of the facts and figures you’re confronted with on a day to day. Peeking into your life on a semi-regular basis I only see a happy, interactive, chubby, yummy little boy who is hitting some solid milestones with ease and parents who love him and seem to have it all together. I think it’s shockingly easy for people like me to forget all of the possibilities and concerns that shoot through your minds every day. That being said, I think that when people tell you that Jack is going to be fine it’s because they have a lot of faith in you even though it may seem impossible to have that faith in yourself most of the time. Fineness comes on a sliding scale and regardless of the bad diagnoses and obstacles Jack may or may not face, he will be fine because he has you.
*in my limited scope of the baby world( two much younger siblings, one of which did pass away as an infant, and my own son), i think the two writers above have comments are so accurate. maybe to be printed out and re-read during those ‘moments’.
*even if jack does, at some point, get a ‘bad’ diagnosis, i know that being the competent parents that you all are(if you feel it or not), you will be able to make things ‘just fine’.
*and to hear that jack is screeching, i take that as a good sign. any man that can verbalize, at any age, sounds pretty good to me.
Some very good comments above. Jack is “just fine” because you have seen to it that he is so. I hope the bad diagnosis never comes. But if it does, it better be ready for a hell of a fight.
right about mom. jack is huge! and soooo cute! guessing mom for next