Saturday, February 07, 2009

In review

On Thursday, Q saw an ophthalmologist. This is a different doc than the one we saw when Q was new. This visit was spurred by the preschool eval, still ongoing. In order for Q to receive vision services (therapies), he needs a specific diagnosis. The neurologist, pediatrician, optometrist, and vision specialist with the Birth to Three program have each thought Cortical Vision Impairment is a likely diagnosis. First because of the thinning of the cortex/white matter to the rear of his brain (in the area of the visual cortex) visible on the MRI, but also because he's behaved visually much like one would expect a kid looking through Swiss cheese to behave, per the description of CVI.

The doctor was quite personable, a nice man, and unusually social (especially for a surgeon). He did a good exam, and talked about how hard it is to tell with a kid like Q what his issues really are, etc. Kind of the usual stuff. There were a couple of things though that sort of caught my attention during the process. First, he told me that Q was the "third or fourth kid with these same issues -- micro gyri" that he'd seen this month. With all due respect, I think he was talking about Microcephaly, also one of Q's diagnoses, but a whole other topic. Polymicrogyria and Microcephaly don't necessarily have anything to do with each other. This has prompted me to think about printing up cards with one side titled: "What is Polymicrogyria?" And the other side reading: "What Polymicrogyria is not" with subsequent lists of helpful details in proper terms, so both medical and lay people can take a quick read and have a better grasp of the subject. I'll be getting right on that, as soon as the boy sleeps through more than 1.2 nights per week.

The second thing was that he didn't notice that Q wanted the light spinner toy he was holding up as part of the exam. The doctor talked about Q being unlike neurotypical kids in that most three year olds would want the toy and try to take it. Right. And Q would have, if it had been available to him longer. I know that I'm more attuned to Q cuing (pardon the pun/alliteration/whatever it is), but how did you not see his hands leap toward the toy? How does one not know that the goofy grin and delighted giggle mean he wants that thing and would gladly arm-wrestle you to the ground for it. If you can just wait until the hands and arms and trunk cooperate. Q's excitement was obvious to me. I wonder if the doctor might have taken longer with Q if I'd talked then about his motor planning issues? It just didn't occur to me...

The night before, Q went down at 11:30 and got up at 12:30. He fussed and kahfitzed about before going to sleep in his little recliner chair around 3:30, then awakening to fuss again at 5:28. (The things we remember at those hours. I was awake for the same reason and felt an earthquake the week before, a 4.5, with the clock reading 5:27am. You know you're inured to these things when you don't even get up but instead open one eye, from the couch where you're lying while you're trying to sleep and pray that the boy will do the same because beds just aren't working this night, to check whether or not the chandelier is swaying. Since it's not, you amuse yourself with imagining how one might describe the motion, what the magnitude felt like vs. what it was, how far underground it was, etc., while you try to drift off again, quickly, before you don't get to. Priorities.) Where was I? Right. So I was up and running again at eight, with Q comfortably ensconced in my bed, now ready to sleep until ten or so. (Eyes rolling) I got everyone else up and moving and we headed out, late, and praying. The office was running more than twice as late as we were, as it turned out. A fortunate thing, because parking there is a bear. I'd mostly happily drive twice the distance to the other children's hospital, just for the two or three dozen handicapped parking spaces they have right by the front door, rather than tangle with cranky people who don't want to walk their handicapped kid five blocks in the stinging cold. The lady who pulled into the spot I'd been signalling for changed her mind and pulled out of it as I circled back around. I'm so glad she did. I'm sure her crazy day was at least as important and thoroughly nutty as mine, but. I had my signal on first, before she was even in the parking lot. She was all pulled in and could have stayed there. But she didn't. This made me so happy I almost cried. (We are recalling the no sleep thing, yes?)

Once inside, the doctor's assistant paid me a lovely compliment when he asked if I was a nurse: "You're describing everything so well and succinctly, just as though you had a medical background." (Yes, well. My medical background consists of quizzing my children's father through his tests -- amazing the things that stick in one's head -- and being a quick study for language-based things, especially when my kids are involved. I read. A lot. Enough that I don't generally have a problem confidently disagreeing with or correcting the professionals when I think they've gotten it wrong. Sometimes it makes them twitchy but we usually fix that pretty quickly -- mostly because we've been fortunate enough to have some really great medical professionals of all stripes on our teams. Speaking of which. Funny story. When the kids' dad was doing his pediatric rotation in the university hospital, the attending pediatrician asked him if he had kids. He responded that he did, four, including a four month old, and that we were all up north, waiting for him to find a house so we could join him there in the south. The attending told him, "You should be nice to your wife, because she works harder than you do." (!?) She went on to speak of her boys and how she loved them dearly, but doctoring was a much easier job than parenting. This made me laugh. I don't know why it struck me as funny, but it did. Perhaps because I hadn't really thought to compare the two? People just do what they do and on we go -- I think learning to be a doctor is a very tough thing indeed, and I love being a mom, you know? How to compare the two? I still think he had it harder. Anyway. Guess who we had as a pediatrician when we moved down a few weeks later? Yup. She's an awesome doc, too. Six years later her comments still crack me up.)

(Have we noticed how distractable I am this evening? Erm. Morning?)

So Q survived the dilation of his pupils and ate his breakfast while we waited for the office to get themselves back on schedule. The harder thing for me to hear when the ophthalmologist was doing his exam was, "Did the other ophthalmologist make any mention of nerve atrophy in the right eye?" I don't know. I don't think so. Q certainly has the most trouble making that eye track, though it seems to have been working better over time (a point I made when the doc referred to Q as "Cortically Blind").

I just don't want him to have nerve damage. Could we have one exam that doesn't reveal some other minor or not so minor catastrophe? So it's probably time to be thinking about surgery to make the eyes line up. While I get that it's important (ish) for the cosmetic reasons (folks respond more nicely to those who look "appropriate" -- the nicest word I can think of right now when I'd just like to point out how inappropriate it is to base your response to another human being on whether or not they look like they "get it"), I don't know about the arguments on the medical side. If his eyes line up better physically does this automatically mean better vision? As in, not double? Or does cutting and etc. in there change his ability to use the neural pathways he's laid down already? Do we really already alternate vision between our eyes, as some experts suggest, and therefore, the risks of losing neural pathways in a surgical procedure is just too great? What to do?

While you ponder that, I'm going to leave you with a story about S. Please leave any comments or info you have about the vision issues in the comment section. Thanks.

After the appointment I stopped by the grocery store to grab milk and baby food for Q. (I make most of his food these days, but sometimes it's important to be able to just stir stuff up and run. Thus the small portions of pre-pureed fruits and veggies.) At the checkout, S was being her usual helpful self and placing items from the cart up on the belt. The checker, who recognizes us every time we're in there, says to S, "Hi! Is school out today?"

To which S replies, all seriousness, "No. I'm homeschooled."

"Oh riiight," the checker says and resumes her work as S chatters on a bit more. S is tired or the patter would have continued and continued and continued... As it was, she had rather a lot to share.

I said to the nice checker lady, quietly, or so I thought, "She'd probably give you her blood type if she knew it."

Nice checker lady chuckles, tickled, and turns around to see S, where she's now positioned herself. "Is that true? Would you tell me your blood type if you knew it?"

S says, perking right up, "Actually, I do." Silence. "It's warm."

Nice checker lady and I blink. Oh right! Warm! As in the science we've been studying! (slapping forehead) Nice checker lady, now grinning, says, "Well, I'm not warm-blooded. I'm cold." Resumes checking.

S, not one to let misinformation stand, says, "No, you're not! You're a mammal. Mammals have warm blood."

Nice checker lady is now nearly guffawing. I murmur that the science seems to be sticking. Nice checker lady collects herself and turns again, smiling broadly, to S to say, "You're right. I'm a mammal. But I'm a popsicle mammal. What do you think I should do to get warm?"

S replies, "Well... I think you should drink lots of hot things... and sit by the fire in a nice chair... and maybe have some soup... and wrap up in a blanket... and see how that works for ya."

I thought we were both going to be crying by the time we were out of there. Me and the nice checker lady. S looked at both of us like we were nuts. Well. Probably so. My brain was somewhere back with the earthquake or the parking space.

Happy Sabbath, y'all. Get some rest this weekend. I'm off to do the same.


1 comment:

Old Dominion Heather said...

Hmmm Have you made any decision about the eye surgery? Your description of the ophthalmologist doesn't inspire confidence! I vote for another consult. Could you come to NC? We have a great PO at Duke, Ruth Freedman.