Saturday, February 28, 2009


I think Q is finally asleep. Big day tomorrow (today) with church and stuff. Pleaseohpleaseohplease? Tiptoeing off...

Yup. Wow am I happy about this. I'm putting him down and going to bed.


Sunday, February 22, 2009


Sabbath mornings are always demonstrations in opportunistic heck. One always begins these undertakings with the greatest of intentions: everyone dressed in the outfits as they were meant to be worn (unaltered by the creative interpretation of color-blind garden gnomes), clean, smiling, fed, and on time. Something you should know about me? For many, many years, I was rarely late to a.n.y.t.h.i.n.g. In fact, I was often the first one to arrive, with my four little uber-prepared children in tow. People were known to comment upon this, most of them parents of less kids than I, most of them floored that this was the case. I found it pretty funny (most of those people were exceptionally busy and I often wondered how they managed to remember their own names, much less appointments and stuff). Acheiving this was sometimes a struggle, but more often just a thing to be planned out effectively and executed. Period. Enter Q. If I'm up and mostly ready before he is, it shaves easily 45 minutes off our collective prep time. Otherwise, well, we've all been in the midst of good intentions gone awry, yes? Indeed.

This morning was okay. The boy was up before I wanted him to be, but was bought off with a glass of water and a Veggie Tales video. Unfortunately, V.T. slows my other children to a near stop. So I got ready and fed him whilst continuing to issue directives. We were planning to head north after church to see birds with my aunt, enjoying a last-minute jaunt before she undergoes a double knee replacement on Monday. Boy fed, children clothed (don't look too closely or you might question the omission of tights in February, brilliant sunshine notwithstanding), equipment, food, and miscellany collected and loaded up, we're off. We'll get there just in time for church and choir practice. Too bad that we'll be missing other fun stuff, but we'll make that commitment part, and, and? Mommy's head is not spinning around and everyone is still being quite kind to each other, so we're golden.

Navigate the freeways (at perhaps a slightly increased rate of speed -- shhh!), loving the music, Q hasn't thrown up, not even a little bit, still golden. It occurs to me that perhaps this was in fact the day that major repairs were planned for one particular part of our route, taking three of the five lanes out. This occurs to me mere seconds before I spot the sea of brake lights over the next rise. Shoot. Music is still good, though. Q's happy. We'll just take this opportunity to review memory verses and the list of the books of the Bible (we're all working on this). Breathing deeply. Patience, grasshopper. Pay no attention to the crazy man trying to block merging traffic with his car. All is well.

I took the exit that would allow us to use an alternate route, noting that about a third of my fellow travellers were doing the same, making this choice perhaps less speedy than it might have been, but we were moving well as opposed to sitting still, so whatever. As we came around the big corner of the long off-ramp, slowing, I pointed out to G a license plate on a car travelling over in the far left of four wide lanes: EPH 2 8. We mused about what Ephesians 2:8 might say. I checked lanes and merged far right to make the next turn, slowing to stop at the end of the line of perhaps 9 cars waiting at the light. As I braked to a stop I heard a low rumbling. I'd seen a pickup in my mirror as I was signaling. As I looked again, the sound changed from very low, almost inaudible, to a higher clanking noise. The pickup was still coming down the angle of the ramp, about fifty feet back and closing, merging from the right, where we had come in from the left. As the driver braked sharply at the unexpected amount of traffic sitting at the red light, several dozen 10-12 foot lengths of 2" metal pipe shot up over the rack that had held them in place, resting in the back at an angle when he'd been driving on a flat surface. When I saw what was happening, they looked like someone had just released a handful of pick-up sticks. No time. I looked back to the front. Traffic was just beginning to creep forward at the light, but there was a tiny bit of shoulder there. I turned the wheel a little, and tapped the gas, only as much as I had room to, not much. I looked back again and the pipes were just about done flying through the air, most of them coming to rest now, some still rolling in front of the truck.

And then it was done. I'd barely had time to think, "OhGod" and just react, such as my reaction was. There was pipe in front of us, on either side, and resting against our back tires. When I drove over it, it did not collapse, but held it's shape. I should probably have stayed, but I was just... stunned. I knew it hadn't hit anywhere on the van because I hadn't heard any metal on metal, and I didn't care about anything else, as long as the vehicle was intact, we were too. G had seen it coming, looking for the sound, and was shaken. The girls looked back in time to see the pipes clattering on the pavement, rolling toward us, but that was pretty much it. With the lovely properties of safety glass, we would more than likely have been fine, really, even if some of it had hit us. But the truck was going around 40 when they hit the brakes, and I'm glad we didn't have test that out.

I was rattled enough that I took the wrong turn for the next piece of highway and we spent a few minutes on surface streets, getting all reoriented. Just before we got to the church, there was an Explorer waiting for EMS -- having just hit a pole, pretty directly head-on. So by the time we got there, the sermon was in full swing and the kids' choir practice was starting. G took Q to walk in the foyer -- the boys needed to stretch their legs. I sat and listened, as best I could. I kept welling up and shivering, then sort of being able to pay attention again. Which is such a shame, really, because when does one get to hear the sermon? Never. And it was so good. What I heard. The title: Subject, Verb, Object. And he tied French philosophy, grammar, and Spooky Action at a Distance together with how conventional wisdom fails us (subject) when things (object) aren't working (verb) conventionally. (Hint: the answer lies in fidelity.) It was just so good; an example of why I love this church so much. Maybe I'll get to listen later.

We went on and had other excitement. Pulling onto the freeway after church, the tow truck removing the sad Explorer passed in front of us. Ouch. Then Q got huffy at lunch time because he could smell the food and I wasn't feeding him. I had thought that his breakfast had been so big that he was likely to still be pretty full and then puke (on me) if I tried to get him to eat anything at that point. So I gave him a taste of G's tomato soup in a bread bowl, figuring that he'd hate it and I could eat quickly and get him a drink and we could get moving again, on down the road toward the birds. He ate the whole thing. The whole thing! And it was tomato soup, so acidic, something I've never dared try before. I sort of fed him with one eye open, braced, waiting. But he ate like a champ. He was completely upright in his chair and managed his head fairly well and just chowed down, barely spilling. And? He never did have any tummy upset. He's sleeping happily right now, having had a monster supper -- 6+ ounces of sweet potatoes and coconut milk plus his extra-special Boost supplement. Can you believe this? Me either.

We were hoping to see Snow Geese and Whistler Swans. We did. The swans practically lined up in fields flanking the freeway for us, if you can believe it. They were huge. We saw the horns of an owl perched in his nest. We walked and saw an eagle's nest and the tenants, Goldens, hunting. Did you know that those nests can be up to fifteen feet across? The Red-winged Blackbirds sang for us. Sandpipers ran. The little brown Winter Wrens hopped and flitted charmingly. Thanks to the observant among us, we saw the clouds of Snow Geese, thousands and thousands of them, about a mile and a half away, like fog, flying over to the nearby island and to a field. After our walk, we drove on a little further -- my aunt knows where to look and what to look for. And suddenly, there was a field full of Snow Geese. Two hundred? Three hundred? More? We sat, windows down, just breathing. (Well. I was still periodically welling up, what with the adrenaline still wearing off and all.) Suddenly, they rose. A cloud of white and black, black and white, alternating as their wings beat. They turned and wheeled for a few minutes, an exercise in precision teamwork, before heading off to rejoin the thousands who had flown earlier.

As we came back on to the freeway, a pair of swans climbed up, flying huge and low, right over us. Right over us. They were incredible. As the kids watched out the back window, more pairs crossed over, faithfully in twos, those birds who mate for life.

The sunset was gorgeous. The kids were funny and helpful and sweet and kind. And now they're asleep (exhausted) and I'm going to head off too.

For by grace you have been saved through faith. And this is not your own doing; it is the gift of God...
Ephesians 2:8

What a day.

Sunday, February 15, 2009


I'm sitting down here to take a break from trying not to tip over. I'm sick. (Shh. Don't tell the children.) I keep doing things today, slowly, like reorganizing the pots and pans cupboard and finding the corn syrup bottle leaking, diligently, as if it should leak thoroughly or not at all. I unloaded the dishwasher, slowly, because leaning over was testing my proprioception skills, which are apparently on vacation. Those spiky things in the drawer parts of a dishwasher are kind of scary close up. I could have had one of the kids do it. They're generally a good help. But then I'd have to talk and that hurts my head. Also, they can't unload a dishwasher quietly. Can't. And I would peel my face off if there were one. more. gratuitous noise going on here. Excessive, you say? No. The slurping of liquids is notnotnot okay. Not even on the opposite end of the house with the door closed. Whispering is gooooood. Holding very still, breathing ever so softly is better. Sleeping might be best, but then I want them to sleep later, when it's dark, so no napping!

I have to go try the syrup mess again. The soaking is bound to have loosened it up, right? And the muted sound of the keys gently click-clacking under my fingers is rapidly becoming a torture akin to those found in the seventh circle of hell.

Stoopid germs.

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.


Friday, February 06, 2009

A gentle nudge

Check out this lovely lady. I found her through Therextras, after a comment on the previous post. (Thanks, by the way -- and I agree about Rona Alexander. I'm still a little giddy from the experience.) Sometimes a mama needs a little propping up, you know?

Sunday, February 01, 2009

Four things

I'm combining topics here because I'm running short on time, not because any one of them is less significant, or less deserving of a full exploration. We'll proceed chronologically through the biggest events of the week.

Preschool. Turns out the co-director of the Special Services is a member of our church. A guy well known for his even-ness. Hurrah. It seems that the details need to be worked out, but that Q will be able to receive some services at home, perhaps some therapy at the school district? I don't know what exactly this will look like and neither does anyone else, since we're in uncharted waters, but I'm so glad to have a team of people who are listening carefully about Quinn's various needs and diagnoses and all working to get him what he needs. More about this to come. That was Wednesday.

Thursday my mom finally got my dad to a doctor about his increasing weakness in his hands. It's, well, it just is. This isn't going to be a picnic. He has risk factors that increase the likelihood that the worst case scenario will play out, but there are things that can be done, so we'll see. Suffice it to say that things will be different than we had imagined and we're all thinking differently about everything. The rest is his story to tell.

Friday. I was on the phone for most of the finishing off of the trial. It's done. There will be papers to sign, I think. I am sad, but in practical terms, nothing in my life changes. Probably the saddest part is that he doesn't see our kids more, and they him. This is the single most wrenching detail for me now.

It's kind of too bad for him that he didn't meet her long, long ago, you know? I imagine they probably both feel the same. Anyhoo, he's marrying her soon and they'll have a long and quite likely very happy life together.

As for the details of the end result? Well... I'd hoped to be able to save for a house. I don't think that will happen, what with kids needing braces, and etc. But I am without a guillotine hanging over my head, financially speaking. I am grateful and relieved for that; it is no small thing. The kids will have most of what they could possibly need and we'll figure out the rest. It will be good, because it will be. Because I said so. Because I am working up to becoming a force of nature. Rowr.

Some of you will now want to ask things about my moving on, dating, remarrying, etc. Here are my thoughts on that: A friend sent me a link to a woman's blog, the widow of a very good man. They had an incredible relationship, a devout/practicing home, much love and laughter, a pile of growing and happy kids, and then suddenly he was gone. She has spoken on her blog of wanting to remarry in part because she had known a Very Good Marriage and wanted that again.

I can appreciate that. Viscerally. I can also appreciate that you wish all manner of good things for me and mine, especially in the relationship department, especially since each member of my little group has most of our lives yet ahead. Life is just not looking like that at this point. And I've got stuff to do, so we'll move on now.

Saturday (Sabbath). I took the big kids to church and we cut out a little early to get home in time for Q to be the demo kid for a feeding class. Rona Alexander, a speech path PhD, came out from Wisconsin to teach a class at the therapy place. Q's new speech therapist, come March, was there too (hurray!). Ms. Alexander had me set Q up to feed like we usually do in the Versaform, then give him a few bites of food, some drinks out of his Boost for kids straw, and using a cup, drink some water. She watched and then took him and worked him over. For about an hour, she did all kinds of compression, stretching, wringing (massage vocabulary coming out there), and generally turned him into a wet noodle. With each pull/push, he sat up a little taller, pushed a little harder, until he was, while perched on an 8" bolster, sitting upright with his feet flat on the floor (!), and holding his head upright, wobbly still, but only a little, with just light support under his arms. Holy cow! He's a shameless applause-aholic and whipped his head around and grinned at different parts of the room in order to elicit claps and laughter. He was totally in his element, and the whole group of therapists was smiling, enthralled. (Later the resident therapists discussed how they secretly fight over him and want him on their schedules. Heh.)

But the coolest thing? Ms. Alexander has shown in her work how tongue thrusting (Q has an often unhelpful tongue) relates to a child looking to right his tone and stabilize his trunk. So after she worked with him to turn him into Gumby and he was sitting so nicely, pelvis in place, head up, she had me feed him again. Guess what. C'mon. Guess.

His tongue didn't push the food or liquid out.

Really. He got the food in his mouth and swallowed it. He had some dribbles, but one can clearly see the progression and note that the dribbling really is just related to his awareness of his lips. Not to the tongue. Not to his ability to take food. So. Not to overstate it or anything, but WOW.

I inquired further about what an ideal scenario would look like, incorporating her techniques into his daily routines and therapies. She said that more therapy sessions every week would be great ( this means $$$, because insurance probably won't cover it). A therapist asked how much of this she'd show to a parent and her reply was, "Well, depending on the parent..."

I asked, rather quietly, and kind of holding my breath, "How about a parent with a background in massage?"

So she showed me stuff to do. It's a little alarming, since it looks like you're maybe about to lift his ribs right off him, but I did it and I can see how it affects everything from his breathing (his OT had just expressed concern for his future respiratory function), to his tongue, to whether or not and how he'll be able to walk or sit.

I spent a few seconds kicking myself as I watched her work, since much of her technique is kind of like Deep Tissue for itty-bitty bodies, and I feel like I should be aware of all things related to muscle/soft tissue, if not actually able to influence them myself. I reoriented my head pretty quickly. I mean, if I'm short on time anyway, wasting it on self-flagellation is ridiculously counter-productive. So I'll do a little bit more work with him when he comes out of the tub -- while he's all warm and softened up, show everyone who deals with him what he should look like when he's propped and structurally working really nicely, and go push gently for more OT and PT time.

Seriously. If I can get a copy of the tape and figure out how to post pieces of it, you would be amazed to see the difference. Shoot, those of us in the room watching the whole process were floored.

That's been the week around here. Plus the regular school and music lessons. And the kids holding their own Art School in the living room. K became the go-fer, G put his sketch book on the little collapsible music stand, and E and S set up their easels (from Christmases past). Q gets wedged between everyone with his birthday balloon in his little fist. After a while, Little Miss Go-fer settles down with her book and they're all sitting there, alternately gazing out the windows and swabbing their papers with color or scribbling away. These things often spontaneously burst forth and it's so fun to watch. God bless 'em.

I've got paperwork to catch up and things to get written and lesson plans to do, so I'm off. Thanks for your prayers and good wishes, all you lovely people. Goodness knows I need them, still and always.