Fun with doctors! A visit to the pediatric neurologist

I wasn't well prepared for our annual visit to Max's pediatric neurologist today. Usually, I have a long list of questions, but I hadn't gotten around to it. So I winged it. Given that this is Max's head we're talking about, and given that this doctor costs a small fortune, that might seem totally irresponsible. But for once, I didn't have a whole lot of concerns to air.

For the first part of the appointment, Max stared out the window at the cars going by (happily, the office is located adjacent to a busy roadway) as Dave and I reeled off all the great stuff Max started doing in the last year:

• Max is walking up stairs by himself.
• He's trying so much harder to stay words, and has been speaking sentences. We may not always understand them but, he's trying.
• He's using his pointer finger. And he's learned how to navigate the iPad.
• He's been showing us what an amazing memory he has—his so-called "special strength." The doctor pointed out this means he's also adept at sequencing (as in, Max knows that to get to the car wash first you have to go here, then there, then turn here), which will come in handy for math and if our car navigation system ever conks out.
• He's recognizing words when he reads signs, books, t-shirts.
• He's more into coloring, which he used to hate (and which is really great for developing fine-motor skills).
• He's using both hands more spontaneously (his right hand is the weaker one because the bilateral stroke was worse on the left side).
• He's got a best friend (a kid at school) who he tells us about all the time.
• He's got great hair. OK, this I didn't say. But it's true.

I had concerns about Max's still-developing trunk control; if he gets stuck in a funny position in bed, he's not yet able to adjust himself. The doctor thought that we should consider aquatic therapy again, which Max hasn't had since he was a baby. [What I thought: "OMG! How are we going to fit another therapy into his jam-packed schedule?!" What I said to the doc: "Sounds good!"] We also spoke about Max's continued challenges with loud noises and sensory OD. The doctor suggested we get him a good set of earbuds. Lightbulb! I don't know why it sometimes fails to occur to us to try obvious solutions. [Banging head against the wall.]

I asked why Max wasn't verbalizing questions. "It's part of his language development—it's not yet in his repertoire," the doctor said. "You have to teach him how to ask questions." He encouraged us to put even more questions on Max's iPad that would encourage interaction with us and other kids, simple questions like: What's your favorite flavor of ice-cream? Where do you live? Would you like my dad to take your car to the car wash, perhaps?

I held back on asking what was up with the car wash obsession, because what the heck was the doctor going to say? It's caused by a lesion in his brain?! Whatever, it's one of his quirks, like Sabrina's insistence on pulling up whatever pants she's wearing to her knees. Although that doesn't cost us $10 bucks a pop, or potentially cause paint to peel off the car. But, still. Max deserves to have his quirks, like every other kid does.

I was very, very, very psyched that the doctor is no longer measuring his head. That used to torture me when Max was little; I knew the microcephaly (small head size) was a result of the brain damage from the stroke. I'd get teary when the doctor would take out his tape measure, because I knew we'd find out that Max's head size was way below normal. Although now it's proportional, and the good hair has definitely come in handy.

Max loved showing the doctor photos on his iPad. He didn't want to get on the scale (maybe he inherited that from me) but he finally did, and he'd put on some decent pound-age (that he most definitely got from me). It's quite possible that, soon enough, he'll have the heft to push Sabrina around and tell her to quit teasing, although I don't think I'll be putting that goal on his IEP.

At the end of the visit, I asked a question I already knew the answer to. I couldn't help it; I needed to hear the doctor say it. "Is it possible Max could have another stroke?" I asked. The doctor looked at me. "It would be verrrrrrry rare. Reportably so. Most kids have their strokes, and they're done."

Dave and I both walked out of the office feeling very content. And Max?

He wanted to go to a car wash, of course.

Those times that make you wonder: Why didn't we get the happy ending?

A few months ago, an editor I know at Parents told me they were running a story about a mom whose kid had a stroke at birth, the same thing that happened to Max. She asked if I'd be OK if they mentioned this blog, and I think my response was something like "Hell yeah!"

It was hard reading the first part of the article, because it brought back painful memories of the trauma surrounding Max's birth—seizures, doctors telling the couple their baby had brain damage and was at risk for cerebral palsy, getting involved with Early Intervention, the mother fearful of what the future might hold for her child.

Then I got to this part: "By the time he was 2, Luc had 'graduated' from therapy, and his neurologist could no longer find physical evidence of impairment from his stroke. From picking up a Cheerio with his fingers to speaking a full sentence and reading simple words, he has met every developmental milestone on time. We believe that having Luc in therapy at such an early age made a big difference."

My heart sank, as awful as that may sound. It did. Not because I wasn't happy for this beautiful little boy—I was. Not because I didn't think it was an important article for raising awareness about pediatric stroke—I did. But still, that "Why not my child?" feeling swept through me. We got Max so, so, so much therapy back then. We still do. We've done everything we humanly can for him. And yet, he cannot pick up a Cheerio. He cannot speak in full sentences.

I know, logically, why not Max. He had more brain damage from the stroke, a bilateral one, than that little boy did. It's sort of like how lightening strikes—there's no control over where it goes or how much damage it does.

I know we are very lucky the stroke was not worse and that Max is doing as well as he is. "It didn't get to the basal ganglia," a neurologist at the hospital told us as he showed us the MRI film of Max's brain. The white parts were the damaged areas—the temporal, parietal and occipital lobes, part of the frontal lobe too. But the basal ganglia—the group of nuclei that lie deep within the brain and are critical to motor control and learning—were spared. In a nutshell: Max would have been far more disabled if the stroke had hit that area. It was the one good piece of news I had to cling to after Max was born. For months, it gave me tremendous satisfaction to tell doctors we met, "The basal ganglia were not affected."

I know there are parents reading this whose kids might not be doing as well as Max is, and they may be thinking I have nothing to complain about. I am acutely aware of that, even as I struggle with my own habit of comparing Max to kids who have exceeded his abilities.

I know that Max is still young and bright, and that he will continue to make great progress.

I know, I know, I know. But it doesn't stop those thoughts from cropping up.

When Max was born, our pediatrician knew of two other moms in our area whose babies had strokes. He connected us, and they came to a baby party we threw for Max. "He'll be OK," one of those moms told me. I desperately wanted to believe her. A few months ago, I bumped into that mom and her daughter in the Target parking lot. Her kid, now about 11, is just like any other kid. There is nothing really wrong with her, her mom told me. Again, that double-edged thought: Good for them, sad for us.

I feel absolutely, positively crappy when I have these thoughts—it seems awful to, well, envy another child's well-being. To covet that well-being. Are these not deadly sins? I don't feel any sense of gratitude when I see Max doing better than another kid who's had a stroke or who has cerebral palsy, I just feel sorry for that kid. But when Max isn't doing as well as another child-stroke victim, that gets to me.

I've tried so hard to quit comparing Max to typical kids. It's taken years, but I no longer do it. Still, I compare him to other kids with the same diagnosis, and it dredges up pain. And gut-wrenching guilt. I hope, as the years pass, I'll stop doing this too.

Do you ever compare your child to other kids with the same diagnosis?

Photo/Stellazine