Saturday, April 21, 2012

What's in a picture?

Henry sees the neurologist annually. We used to go more frequently, but seizure free means neuro free, and I'm happy to let both of them go. During our final appointment yesterday, he went through the drill, 34 pounds, 38 inches tall, good heart rate, blood pressure, and look at those eyes, and are those dimples?!? (somehow that ALWAYS enters the conversation about this point). Our brilliant doctor whom we adore, really, then starts going through the tests, copy this drawing, name this shape, identify colors, to check on development. He asks Henry what his favorite foods are (pizza and 'nanas) and what he likes doing most at school (drawing, and playing with "kids"), then put him through the physical checklist. Walking? check. Running? Jumping? Check. Check. Dancing? Oh yeah. Demonstrating his verbal skills left Henry belting out "Am I a Muppet or a Man?", which our neuro thoroughly enjoyed. Then he looked a little confused, and brought up Henry's original CT scan, taken the day after he was born. I've never seen this particular image. Well, that's not entirely true, I vaguely remember having seen it in the exhaustion and stress of the NICU. I've certainly seen it reflected in the eyes of Henry's pediatrician who treats Henry with a little bit of awe every time he visits. I've heard the "I'd never believe it if I didn't see the scan myself" from his colleagues we've visited occasionally over the years, as it seems Henry's been the subject of a staff meeting or two. I've just never really seen the image for myself. Until yesterday. 

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. 


  1. I remember those days in the NICU...and I remember all of those words.....I remember you telling us what wjas said...and I remember the determined look on your face. God chose the perfect home for Henry. I remember Jenny repeating to the doctor, "But if his parents are both really smart and really stubborn (maybe she didn't say stubborn...),won't he have a better chance?" She had already given voice to her faith. Henry has always been a miracle child, blessed by miracle parents! Bless you all....and that wonderful big sister who sees perfection in her younger brother!

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  3. As we used to sing as little kids...

    My God is so BIG, so STRONG and so MIGHTY...there's n
    nothing my God cannot do (clap clap)

    I haven't been on FB for awhile but signed in just to read this amazing story.

    Thanks for sharing. As Momma T said, God chose the perfect home for Henry.

    Love ya,