Immersion

So we're at Suzuki camp.  Q has had a hard time settling the last three nights and tonight, in addition to us singing him The Two Grenadiers, in parts, G brought his viola and quietly played Q out with Humoresque.  I've frozen those moments in my head so I can have them always:  Q draped across me atop his bed on the floor, drooling on my shirt, almost trying to still fight sleep, K in her bed, S snuggled with grandma in her bed, E in the shower, and the giant boy who is taller than everyone else much of the time these days sweetly playing his punkin brother to sleep.

There's plenty of irregular nonsense, as is the case with Life.  There's a crazed seagull outside the window right now, for example.  And G is probably not yet asleep, though his sisters are, and he will miss breakfast in the morning if he isn't out soon.  There's the part where we're figuring out the new versions of the parent-child and child-parent relationships - no easy task even when everything else is smooth and lovely, much less with a few irregularities thrown in.

However.  That young man who played for the littlest guy of the bunch also let me know that he's decided against looking for a job right now, though he'd need one to get a phone, which he badly wants.  He's forgoing the job so he can focus on succeeding in school.  He's making plans.  And his sisters aren't far behind.  This is so incredibly awesome.  I know people often report the empty nest thing, and I'll probably have some of that too, later, but oh wow, is this exactly what all the hard work has been for!  I just love that they're in the middle of the progressive circle that takes them ever nearer competent adulthood.

And this week has been great for us all, in different ways.  The teacher who trained under Dr. Suzuki himself captured G's imagination, the one who dances with all thirty-five of her sweet younger kids while they play with violins atop their heads has S smiling like crazy (she loves all her teachers).  E and K were given tiny things to work on that will improve their performance in gigantic ways - much of which carries over to Real Life, too.  Q wants to go home with his Rhythm teacher so he can always have such fun.

So hurray for a week well spent.  For kids who've taken great advantage of the opportunity (and are willing to work and save for the next go round).  And hurray for the bazillion people who've helped with Q and all manner of support roles.  We wouldn't be here without you.  Thank you so very, very much.

In my running around campus and I've collected about three miles per day, huffing and puffing as we go.  This campus is built on a hill, so it's either lots of stairs for me or hauling Q up and down hills to handicap accessible entrances.  I forgot to mention when  posting about the news of Friday (ortho appointment) that Q weighed a little more than 40 lbs.  Hooray!  And so does his chair.  Not hooray!  So when "sprinting" behind him up hills, I'd like a little fanfare.  Or a sparkler.  Or just a bottle of water might be nice.

Sleeping time now.  Yikes, but we're tired.

Oremus

I have just a couple of minutes before Q's ibuprofen really kicks in. His fever went from 101.3 to 100.3 in about half an hour, thanks to the last dose. I'm popping in to ask for prayers. We're having a cold. One of those very sore throat, barky/croupy coughing kind of cold. This particular bug, having hit Q's neuro function as they often seem to do, has left him jumpy, with much crying, plenty of coughing, and a gag-reflex that's so sensitive that he lost his supper last night because the homemade mac and cheese wasn't perfectly smooth. Perfectly smooth mac and cheese equals glue, so I didn't want that... Anyway, we wore it. This morning he kept down the pears and blueberries, all two ounces of them, but lost about half of his Boost (FKA: Just For Kids). Avert your eyes if you're nauseous or have those kinds of "issues." I could tell that it was about half because it had no red medicine (guaifenesin and a decongestant) in it, nor any of the herbal stuff for inflammation that's violently yellow. It was just plain white. Hallelujah.

Before I run off to drip some more 1.5cal/ml stuff into his little head, I'm asking for some prayers. My arms are pretty tired from carrying the snuggly punkin around. I know he's losing weight -- yesterday was not a good eating day either -- but he's still around thirty pounds. My back can take this, but my arms and shoulders are waning, I'm afraid. His respiration rate was 32 breaths/min. while he was sleeping. I'm pretty sure that this is due to the fever, which tends to be a bit higher than the readings I can get -- after this many kids, I find that I'm pretty accurate when just feeling for the temp, you know? I'm guessing that he was closer to 102. Dehydration may also play a role, so I'll have the cup of water and syringe for him in just a minute. He's not sleeping very well. His nap today was about twelve minutes, though he could clearly have used more. I started him on Xopenex and Pulmicort last night because it's clear (to me) that the inflammation in his bronchii is driving most of his discomfort and inability to swallow. I see no spots or other signs of strep in him or any of the other kids, just croupiness (so far). Nighttime tends to be significantly harder when he's sick. The virus seems worse, my arms more tired, the options fewer.

Honestly, at this point if I thought it would have an impact on the duration of illness, I'd take him in for IV rehydration, not because he's so desperately in need of it (though I'm watching), but because aspiration is always a risk, orders of magnitude moreso when his tone is floppy as it is now. And because he needs to have some calories and then sleeeeeep. And because aspiration risk rises and just plain freaks me out when he's crying through an entire feeding.

So if you don't mind praying, we could use it. The big kids aren't liking this bug, but it's not affecting them the same way. They can swallow medicine and it's helping them pretty quickly. They're having tea and other soothing things as well, listening to audio books, lolling in the sunshine, and generally lying low, but none feeling as sick as Q.

K made grandma a big old pot of tea when she was feeling yucky with the same bug a few days ago. It was much appreciated, and no one will ever bring up to her that it was Organic Mother's Milk Tea. "To Promote Healthy Lactation." I considered using this to introduce an object lesson on reading the whole phrase, vs. just the beginnings of words or phrases, but I think I'll find another opportunity. One that does not involve me laughing 'til I'm breathless.

And, because I was going to post the following last night (but became waylaid with, well, let's just say "laundry")...

I just love PW. Check out her recipes, her gorgeous pictures, her hunky hubby, her homeschooling posts and information. If she weren't so nice, I'd be just a smidge jealous. (grins) She's an inspiration, especially in the smart, um, alek, department.

Hope you're enjoying the spring -- we've hyacinths and violets, birds gathering twigs for nest building, daffodils and tulips and fluffy pink cherry trees. Aside from the wretched throat/not eating thing, it's pretty nice here.

XO.

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.

::Smooches::