I know how amazing my little man is. I know with every fiber of my being that he's going to be ok. I hear the neuro say that now that Henry's three, his hand spasticity is largely permanent, that the window we had to improve it is closing quickly, and I know he's wrong. He doesn't know Henry. He doesn't know how stubborn this kid is, what a great problem solver, how epic his life will be. What he does know is Henry has half a brain.
The image showed that the left side of Henry's brain was completely wiped out from the stroke. The clot that passed through the placenta and lodged in the middle cerebral artery hit the junction of the arteries and broke up, sending a clot down the anterior artery as well, destroying his entire left brain. The image was impressive. The right brain, even in the newborn, even on a CT scan, you could see the white matter/gray matter contrast, the different lobes, the intricacies of the color variations. The left brain...huge areas (accounting for about 80% of the total area) were just dark. No contrast, the only color variation was the swelling, evident on the CT scan, that showed the left hemisphere's swelling pressing into the right.
Holy shit. My kid has half a brain.
Fortunately, I didn't know that until yesterday. So I didn't know that based on Henry's CT scan, he'd never be able to walk or run, certainly not dance. I didn't know that language was not just something he lost in one focused "brocca" area, but in fact, that the entire left hemisphere was gone and according to his scan, would never return. I didn't know that was supposed to happen, so we didn't let that happen. I didn't know better, so we worked on his muscles with intensive PT and OT, we read stories, we turned everything into a therapy session, we were so successful that he's not once qualified for speech therapy because he's cognitively ahead of the typically developing 3 year old--he understands everything, he just doesn't say much. And then he started school, and sticking him in a classroom with other 3-year-olds challenged his verbal skills to catch up in the best way, and now they are all on equal footing. Verbally, cognitively, developmentally, he's not delayed at all.
That's why our neuro looked confused. In his expert opinion, there's no reason that Henry's CT scan at birth would reflect the independent, VERBAL, capable, MOBILE, dancing singing toddler in front of him. Impressive indeed. That's my little man.
Yesterday was an emotional roller coaster. The image sticks in my mind and I can't seem to shake it. I'm glad I didn't see it three years ago, as I don't know that we would have had the energy to get us here had we known what we were up against. Our neuro said that now, they do MRIs in addition to CT scans in the NICU. That provides a clearer image, something that parents see on television so can then recognize in their own child. I'm grateful they didn't offer that of Henry. I appreciate the fuzzy vagueness of the CT scan that hints at but doesn't dictate the future.
Hug your kids/partner/pets, Henry has dance class this morning and we don't want to be late.