Many have been asking about how our NICU follow up went on Monday.
Our appointments were at noon and one, their nap usually happens at 11-1. At 12:45, we were called back for their Bayley Assessments...needless to say, the monkeys were not performing up to snuff.
Monkey A has been crawling for exactly a week at this point and is still a little wobbly. Monkey B is shy and tired and not interested in "talking" to the occupational therapist administering the test. The assessment is standardized so the assessors are not permitted to take the assessees' mother's word for what they can do. So, if they don't see it, it didn't happen. Lame.
Then we wait another half hour to see the doctor, who sticks by her original diagnosis, despite my questions. I do hate her less than the last time...I guess last time I felt like she dropped this giant CEREBRAL PALSY bomb on me and then left the room. This may not have been the case. She explained (I think) that she's referring the corpus callossum and other "white matter" as the same thing and that Monkey's A's thinner white matter can be indicative of cp. Which does not match what I've read, and I've read A LOT. Regardless of whether she's right or not, the treatment at this stage of the game is identical, so we work and wait until January when we see the other specialist.
Monkey A is.....a totally different baby than the one who started physical therapy in June. In June, he could barely roll over, and now he's crawling and almost pulling up. He's babbling like mad, and his fine motor skills are amazing...what bothered me most I think about this visit was that the doctor's lack of acknowledgement of how far he's come. Of COURSE I'd prefer mild CP over the potential cognitive and social difficulties a corpus callossum disorder would indicate, but it's not up to me and the boy is going to be who he's going to be. And the doctors' lack of future telling skills is driving me positively batty.I want answers, and since I can't have them, all I can do is all I can do.
A fellow preemie mom coined the phrase "chokeabitch threshold" to explain how we feel at these visits. We want to take these doctors, nurses, therapists, dieticians, receptionists, we want to take them, and shake them and scream, "MY CHILDREN ARE AMAZING INCREDIBLE MIRACLES!!! WHY CAN'T YOU SEE THAT?!?!?!"
And that is what I leave you with tonight. My children are amazing, incredible miracles.