Bring it.

My son, the athlete. That's the largest takeaway piece from three hours of back to back appointments with various specialists last Friday. His affected hand bends in an unnatural way because of the spasticity of his muscle, the pinky side is so tight that it has pulled the entire wrist at at an angle. He has a brace that *may* help (they aren't really sure) but he won't wear it because with it, he can't throw a ball or hold onto his bike. And the neoprene material doesn't breathe, so it's hot.

His gait is worsening, as is evidenced by the constantly scraped knees. They want to refit him with an AFO, a brace that spans the length of his right calf, and continue with a new orthotic for his left foot as well. The braces he has now are made of a rigid plastic that prevent him from running or riding his bike, and aren't the most ideal summer footwear.

So here we are. We're working with our orthoticist who has been testing a new brace designed for athletes. It's smaller, more light weight, and should still provide the support that will help Henry support himself when he tires. And, more importantly, it will allow him to move the way four year old boys need to move. We have a referral to meet with a hand specialist, to assess Henry's ulnar deviation (fancy language for super-stubborn pinky finger muscle). They will fit him with a hand brace designed to prevent him from pulling his wrist, with the goal of treating him as an athlete. Whatever splint or brace we end up with will be designed to throw a ball, grip a bicycle, all in the heat of summer.

He's an athlete, and his doctors are treating him as such. I'm still wrapping my head around that one.

The developmental piece is trickier. His teacher talks about not being able to identify numbers or letters the way a typical four year old can, and the disconnect between shapes and language she's noticed in countless different scenarios. After speaking at length with our physiatrist, she is convinced that it's not a global delay, but instead a form of aphasia common in kids with cerebral palsy. He sees the square, knows it's a square, but can't get his brain to say the word "square". He excels at sequencing images in a story, but when it comes to describing the images he's silent. He knows the answer but can't find the words.

Our next specialist visit is with a neuropsychologist who'll study the way Henry learns concepts, and then how he expresses his knowledge. Everyone seems to think that intensive speech therapy that focuses not on pronunciation of words but on general language concepts is the place to start. We have four appointments already set up for the summer.

So that's where we are now. Four speech appointments, a neuropsych eval, a hand specialist, and an orthotics appointment (and follow ups). All to take place sometime between now and September 1, which also means it's the same time as opening seven shows at the theatre, hosting six appreciation events and two open houses, two concerts in the park for the local library and balancing summer baseball and violin lessons for Charlotte while training for a half marathon.

Bring it.

Hug your kids/partner/pet and don't forget to breathe,

b

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. 

b

Buddha Baby on Brain Science

I know that Henry is brilliant. I know he will be fine. There's not a doubt in my mind he will have a deeply satisfying life and will shape the world around him in unimaginable ways. I know this. But I'm the mom, so I play every 'what if' scenario in my head and project futures that are entirely dependant on what I'm doing right now. Everything from the daily therapies to what he eats for breakfast to why potty training will never happen... don't get me started on weaning. The rational side of my brain knows that he will eventually be potty trained, he won't nurse forever, high fructose corn syrup won't destroy his potential and that the daily therapies matter. I know that. That's the left side of my brain, the constant chatter, the inner dialogue, the detailed language I use to project, study, organize, predict. That's the left side. Cause and effect. Linear. Detailed. Left.

But that's the side of Henry's injury, the part he lost in his stroke. So what does his brain sound like?  How do right-brained people think?  Yesterday I found myself mesmerized by a Ted Talk (http://www.ted.com/  seriously check them out if you haven't before!) by Jill Bolte Taylor who authored "My Stroke of Insight". Short version, she was a neuroscientist who had a stroke at 37, and recovered fully. In her Ted Talk, she spoke about the difference in right brain and left brain thought, and it gave me new insight into Henry's world. The right brain deals in the sensory experience of this very moment. It thinks in pictures, embracing the collage of sights, smells, sounds that make up the now. It learns through movement, it feels. The right brain focuses on the (quoting Seamus Haney here) "IT of it all". It connects us to the world around us, and each other as sentient beings in that world, on a cellular level. It is experience. It is sensation. Being one with the universe because no one told you not to be.

I know that Henry's left brain wasn't lost, that he will recover the same way Dr. Bolte Taylor did. I know that. What I secretly hope is that he will retain the ability to turn off the left side's brain chatter and embrace his predisposition to live in the moment. That he will be big, confused about how to squeeze the enormity of his being into the tiny body that is Henry. That he will experience life more fully somehow than those of with excessive mom brain chatter. That he won't project a thousand what if's, and instead just be present. Just Be.

As long as we're sharing secrets here, the other secret I have is that I can't do yoga without crying. I can't turn off my brain chatter and be. It terrifies me. I am far more comfortable living in the land of projections and hypothesis than the current reality.

So that's my challenge to myself. To be present. To embrace my right brain and turn off my left brain. To taste dinner instead of putting it on the table while running a bath, reviewing Charlotte's homework, listening to the news. To cry during yoga, but to be okay with that.

Hug your kids/partner/pet, and turn off the chatter. This moment will never come again.

-b