Life goes on

Q started the next higher dose this morning. He's having a snuffly nose, so I gave him Benadryl also--between the two he was out hard for a looong nap. I got some laundry done, some organizing of itinerant stuff (and it is, not merely ubiquitous, but also itinerant), a wee bit of research for field trips. The kitchen is cleaner, the trash is out (thanks to the G and S team), the bathrooms are spiffed up (thanks to E), K is organizing the shoe racks by the front door and putting away the flotsam that accumulates near the stairs. S is on a mission to collect all the shoes that aren't where they're supposed to be. Q is stretched tum down across my lap, drooling over my leg, kicking like mad. "We're All in This Together" is playing (mix courtesy of my brother) and we're dancing while we work. I'm sitting now because vacuuming whilst carting the punkin is difficult and requires breaks. My left biceps must recover sufficiently to man the machine while I go on to wear out the right side.

While I'm typing, the second load of sheets are running. The dryer vent is outside the open deck door. My self-administered reward for surviving last week's events was the purchase of ridiculously expensive fabric softener sheets. Mrs. Meyer's Geranium. For those of you who don't know, my girls have eczema which is not too bad most of the time, unless their clothes/sheets are washed with scented detergent, dried with full sheets of fabric softener, or they bathe in or spritz with too much "smelly stuff." On the one hand, it's a shame, because there's some really nice smelly stuff out there. On the other, it makes it easy to limit severely the amount of smelly stuff in the house because most of it (in my/their price range) is wretched and makes me sneeze. So I use the occasional half sheet of fabric softener, just to keep static down, and we're trying out the new stuff on the grown-ups sheets first. It's made with geranium, rose, and clove oils. Ahhhh. The air wafting up through the screen door is luverly. Hope it's the same on the sheets themselves.

Q is becoming somewhat less enamored with his position. The CD has moved on to "What a Beautiful World." It's warm here. Sunny. We had sliced Honeycrisp apples, veggie corn-dogs, papadum chips (TJ's) for lunch. Big drinks of water to keep the busy little people hydrated while they dance and clean.

Yesterday was fun--we walked through a National Wildlife Refuge (birds), stopped in at the visitor's center where my parenting was complimented--always nice, but it makes me blush. We walked a loop trail, then sketched the scenery, frogs, birds, each other, while enjoying gingersnaps under the covered observation area. (Now "Yellow Submarine" is on--"Eric the Half-a-Bee" can't be far behind. Love it.) While we were driving yesterday, we listened to "Sing a Song of Tuna Fish"--a CD of the book by the same name, read by the author. I recommend it. I had to squelch my own laughter in places where the kids were clearly taking the story quite seriously. Better go put the fussy teething baby down. More later. . .


Well, in the meantime, I've fed the kids twice (swimming requires an extra meal), done the swim lesson run, gotten Q down, only to have him wake up again, read stories, and dropped a twelve inch square piece of slate on my foot. At least it wasn't my toes. Bring on the arnica.

After looking at the photos from the last week, I thought I'd upload some to share. I tried to make an album with MSN, no luck. I tried to make an album at Yahoo, no luck. I've tried four times to post here a picture of the lovely scene we were sketching yesterday and Blogger won't do it. I'm out of patience. If it weren't so late (after midnight now), I'd try to set up something on Photobucket. It comes highly recommended. (Thanks, Amy.)

While I'm busy reveling in the perfect moments, strung together, life creeps in, eh? No such thing as perfect anyway. Sigh.

'Night all.

Hello

I'm still here! Breathing! Feeding the kids! Folding laundry! Tra la!

We had a very odd weekend which I'll post about as soon as I can cobble together the time required to do it well. Until then (don't hold your breath), here's some stuff to chew on.

Thesis topics: Themes of loss in Lucy Maud Montgomery's Anne of Green Gables series. Hmmm. Okay, there was more than one thing in my head when I first thought about this. . . Perhaps I'll just come back to that.

We're (sort of) taking the week off from school. We've had a very successful first six weeks and are wrapping up loose ends while otherwise going about the regular business of life. We hit the zoo/aquarium yesterday, planned to do a big tour o' fun today following piano lessons but the teacher called to say that she was on her way out of town to attend to her failing father, poor lady, so we did other, less consequential things instead. Tomorrow, following counseling, we'll be off to a bird refuge (shhh--the kids don't know it yet) and I can't remember Thursday's plans. Friday we're going to go pay fines at the library (wheee!), check out another two giant baskets of books, and get Q back to his regularly scheduled therapy now that our beloved PT is back from her honeymoon.

At the moment, the most pressing things in life are: getting Q to keep his Trileptal in his mouth long enough to swallow it, figuring out a more advanced earth science and astronomy curricula for my boy who could quite nearly have written our current ones (minus punctuation and spaces between words, of course, because we've yet to see the compelling argument for those), gathering gumption for the daily-ness of things, and getting enough sleep. And on that note, I'm off to bed. Thanks for the ongoing thoughts and prayers.

(P.S.--Q is doing well on the Trileptal. He slept most of his first 24 hours on it, but woke up after, mostly happy--but for the teething. Ack! His dose increases again on Thursday. I expect him to be quite sleepy again, but it seems to have resolved quickly for him and should again. He's had small seizures with far less tone present than in previous episodes, thank God. His hands have been softer, more relaxed lately. It seems to correspond directly to the work I do on them--massage, finger play. Good news, that. On we go.)

Fun

We had a lovely time at the fair. We enjoyed the requisite cotton candy (a cone, shared) and stomach churning rides. We saw 4-H animals and projects, giant carved pumpkins, quilts, needlework, a big Lego train set, paintings and photographs, prize-winning bread, veggies, canned fruit. We learned that Highland cattle have bangs--their horns would make a nice cow wig. We learned that a cross between a zebra and a donkey is called a Zedonk. We learned that alpacas, as members of the camelid family, spit, but rarely at humans. We walked a lot.

We came home to a fantastic dinner courtesy of my mom: pasta with a "cream" (milk) sauce made with cremini mushrooms and parmesan, green and yellow string beans, sliced tomatoes with fresh mozzarella and basil from the garden. It was almost enough to make up for the wretched (but happily enjoyed) diet of the rest of the day.

Q slept most of the day away and is zonked now--no doubt a combination of the over-stimulation of the crowds and his new medicine. He liked what he was awake for. Nursing, mostly. Next year he'll notice the animals and want to try to milk the pretend cow too with the big kids. Maybe it will be good therapy for him, who knows. Maybe he'll be ready for a taste of cotton candy by then.

What a day. Lots of fun. I'm glad the fair is over 'til next year.

EEG

This morning Q had his EEG. Battling traffic, we arrived quite late without having kept Q awake en route--this because he was to sleep during at least part of the EEG if at all possible. He got the little red greasy pencil markings all over his head, the scrubby exfoliant stuff on top of the little red marks, the globs of cream and little metal cup-shaped leads, tape to hold them in place, stretchy gauze to then hold the tape in place. He was hungry while the nice EEG tech lady got him all fixed up, but he was remarkably still and patient--I held him for much of the hooking up procedure, which she said just never works--it did today. He nursed, listened to the birds outside the window, then laid on my tummy and talked. He'd done quite a bit of yelling at the marking phase, so was nice and tired. After much cajoling, he slept, courtesy of the Hyland's teething tablets--which I spotted when I asked her if she could reach the rarely used pacifier out of the diaper bag (my range of motion was small; those leads are very short). Turned out there wasn't a pacifier in the diaper bag, but when I saw the bottle I thought hey, why not try the tablets? Can't hurt, might help. They hadn't even dissolved in his mouth and he was out. Thank God. We proceeded from the EEG lab to the neurologist's office, more than an hour late for Q's appointment.

It was Providence that Q slept because, as it turns out, the telling "blips" in his left frontal lobe showed up almost exclusively when he was asleep. Imagine an itinerant domino that is perpetually falling over and righting itself, falling and righting. When it's all by itself nothing much comes of it's falling and righting, falling and righting. If it gets near another group of dominoes, or they get near it, when next it falls it takes the group with it. The dominoes may vary in size of group, size of individual dominoes, colors, etc.

So when Q is having repetative sharp intakes of breath with his arms flung up, even babbling happily between inhalations, that repetition is likely seizures. When he is tense, appearing stuck in a startle reflex, hypertonic on one side or bilaterally, crying at a higher pitch, sounding scared, worried, this too is a seizure. I suspect that his very restless nights are also seizure activity. Earlier this evening, he had a seizure that lasted about three minutes. It was the longest so far.

(Splat. There goes my head again.)

I began the Trileptal dosing this evening. His dose is tiny (only .5 ml) and will go up steadily over the next few weeks until he is at the daily dose of 5 ml, split and dosed every twelve hours. Apparently, this drug is the most benign of all the seizure drugs. A tiny percentage of patients on this medicine fail to self-regulate sodium excretion, so Q will have his sodium levels checked in three months. A tiny percentage experience irritability or drowsiness which usually resolves in a matter of weeks. Otherwise, there are no side effects for liver damage, bone density, etc. for which I am so thankful. I am praying that this drug will work and we won't have to deal with any others, at least not for a good long while. There are no cognitive effects at all, so Q can go on developing to the best of his abilities.

The fact that he is having seizures means almost nothing for whether or not he'll go on to have worse seizures or "grow out" of them. It's anyone's guess at this point. The reason to treat now is that by controlling the seizures, any chance at further brain damage is curtailed (we hope). Though the seizures he's had so far are not likely to have caused damage, more frequent and/or longer seizures easily could. If he were to have a seizure lasting more than five minutes, to become unresponsive or otherwise seem seriously "off" for any extended length of time, we are to call 911. But hopefully the Trileptal will stop it here.

I talked with the kids about what seizures mean and how we all have our own particular brains with our own "issues"--no brain is exactly like any other, everyone has their own peculiarities and these are Q's. Some of us have difficulty reading, some with focusing, some with seizures. As we have friends who have had seizures and talked with my kids about feeling ill, they are not entirely without context. G said that he doesn't want Q to have seizures. (What does one say?) I told him that I don't either and hopefully the meds will help. We talked about what to do if they see Q upset or if they hear him crying like he's scared. E wants to have some medicine to give him so it will stop--I told her that I wish it worked that way, but the meds will eventually affect it, just not at the time of the seizure. If I'm in the shower they should look at the clock (the bigger kids) and come get me or Grandma. The little ones can just come get me right away, or pat the punkin on his tum or hold his hands. Any gentle touch seems to calm him a little until it passes and he can relax again.

I've eaten my third smallish bowl of chocolate pudding. It's homemade, it's warm, and it's sooooothing. It's high in calcium which is very good for milk production, right? It's chocolate: my dad calls it vitamin "C"--heh. It is, this evening, central to my nifty stress diet.

Tomorrow, we are going to do a little school, do a little cleaning up, and go to the fair. Today it rained so hard and horizontal for about five minutes that there were rivers running rocks, gravel and fir needles down the road, there were waterfalls over the gutters, there was hail dancing on the skylights. Good stuff for reinforcing our lesson from Tuesday about clouds and how various types of precipitation form. We decided that, due to the diameter of the drops, it was definitely rain and not drizzle. (I know you're relieved to hear that.) The weather should be clearer tomorrow--though it sounds like it's dripping out there again. Since the evening was clearing, leaving the clouds all pink and blushing as we were leaving swim lessons I'm going to choose to live in hope, that's what.

Perhaps I'll add a dash of temporary denial and call it good. It won't be as good as the pudding, though. Ha. Got any good resources for info on seizures in babies? How to talk to kids about seizures in their siblings?

I'm off to put the pudding in the fridge and go to bed. Hug your babies. 'Night.

Splat

That'd be my head falling over onto the keyboard.

Yesterday afternoon Q started having a profound startle, sharp intake of breath, seeming to be stuck in flexion. It makes him cry, he seems to feel as though he's falling through space, sometimes it sound as if he's in pain. If he's being held, he sometimes pulls his knees up sharply and just howls. This looks very much like seizures.

As a result, tomorrow morning at eight he has an EEG followed by an appointment with the neurologist. I got part of one of these episodes on video and will take that along. I don't know. It'd be great if the EEG would show something so we could do something, but of course it's best to not have seizures at all. In which case, wouldn't it be grand if he'd stop having whatever it is that looks like seizures?

The swallow study was not a raging success. He had to be strapped down and turned from his back to his side and back again. He did not like the barium (big surprise) and swallowed only what I could dribble into his mouth from the glucose/formula bottle. Does the stuff have to be chilled in order to work? Is it a chemical thing? Because--radiologists take note--I really think babies would take it better if it weren't icy cold. Just a hunch.

The radiologist (unusually personable for a rad) seemed to think that whatever he had seen looked clear for swallowing, reflux, gagging. He said he'd review the video and write notes to the pediatrician ASAP and she was welcome to call him today if need be. Again, unusual, but very nice.

Yesterday was Q's first speech therapy session. He doesn't like having gloved fingers in his mouth. He was generally unimpressed with the whole touching of his face, gums, cheek play. Even that is good, because at least he knows the face is his.

School is going well. We're about to have a week's break (for zoo, aquarium, wildlife viewing, hikes) because we've done so well in the first six weeks. Tra la. We've done art, math, English (grammar, writing, handwriting, spelling, phonics, reading), Latin, logic, some dictation, copywork, memory work. The kids are back from the end of summer break for piano and have resumed swimming lessons. They want to start gymnastics again. Ack. Perhaps I'll let them if they promise to keep a couple of assignments ahead in math and English (ha!). G is loving the reading. They're all doing fun stuff, but G is moving into a more, ah, complex level of literature--he's done Sir Gawain and the Green Knight, has read a bio of Attila the Hun, and will shortly begin The Canterbury Tales. We'll see how that goes in picture book vs. Norton's Anthology of English Lit--any guesses?

I'm going to try out Teaching Textbooks for G's math. I see no need to frustrate the poor kid with having to write and rewrite all the processes when his brain leaps through them faster than his pencil can move. I hope he likes it and that he'll begin to love math like he does science. Even better, I hope that they will all decide that they love math so much they beg permission to work through it at their own rapid paces and I never have to say another word about it because they just love math so much!

Yeah. The sky is a purty pink in my world . . .

I am t - i - r - e - d.

So off I go to persuade the girls to sleep and then I will collapse as well, unless Q is up. Ah, there he is now.

Have a good sleep. :o)

Being

I was just reading Job.

"Why does the Almighty not set times for judgement? Why must those who know him look in vain for such days?"

There's a LOT of insanity floating around in the stratosphere, atmosphere, lithosphere. Some men, formerly thought to have been solid, stand-up guys, have gone off their nut and decided to do things that threaten their families' safety, well-being, livelihoods. Some people have made bad choices, others have been on the receiving end of crummy genes and then compounded their rotten luck with bad choices. This makes for an odd soup--and not much fun for the minors. It makes me want to engage in a good old-fashioned smack down. You know, to help handle the evil-doers. I have a surplus of righteous indignation these days.

So what is up with this? Does every generation have to leave it's own sad mark on it's children? It reminds me of the story about the man who grew up with an alcoholic father beating on him. The man became a father himself, also an alcoholic. The man thought he was a good father because he didn't hit his kids. They saw him in a drunken stupor often, but he had risen to his own expectations and didn't see that he wasn't the dad his kids needed. What mattered to him was that he wasn't hitting his kids--this made him a better father than he'd had.

Do you see how the logic is full of holes? Just because a person isn't as bad as another doesn't make that person righteous. Being a lesser evil doesn't justify one's life. I believe that it is imperative that we individuals be willing to rise to the expectations of One who knows what we can be, not just the mess we are prone to be as a result of our particular nature/nurture combination (plus that zero entropy thing again--sheesh). How else can we expect to succeed on any level as parents? As citizens of this planet?

The sins of the fathers (and mothers) surely are visited on the successive generations. It will be this way until we don't live here anymore. Perhaps those of us who wish for something better might strive for higher goals in more tangible ways. Parenting classes, brain function seminars, books, good friends, counselors of many stripes (clergy, our own parents, psychologists, etc.) all things/people which can prop us up in our journey. Are we afraid to admit that we don't know it all? That we seem to be the only ones who didn't get the handbook in our "Here's What You'll be Wondering About When Everyone Else Seems to Have It Together" kit at birth?

Goodness, people!!

Some of us need desperately, in order to redeem any vestiges of our souls, to apologize, long and hard and repeatedly. Some of us need to realize that though we deserve to hear such apologies, we never will, and? We will be okay anyway. It is time for the lot of us to get on up and get over ourselves. Take your meds, figure out what you need for vitamins, supplements, sleep, shoulder(s) to cry on, go for a nice walk or run in the rain. I don't care what you need to do to cope (within reason, obviously). Just do it, already. (This includes myself--this post is partly a pep talk for moi. Thank you for your patience.)

Boy. I guess in looking around, I just find it hard to take that we're all such a mess, that we can dog on ourselves but not see the same issues in others, and we seem to be continuing that middle or high school nonsense of believing that we're the only ones with any sort of problems (or the reverse: we're perfect and everyone else is the problem). What? You're in your mid-thirties (go with me, here) and you're still wishing you had Susie Cheerleader's hair? C'mon. Really? Or now your kids are hassling you--they've developed ideas of their own (pesky little people anyway) and aren't quite conforming to what you thought you'd have for kids. So? How about the spouse? The belly/stretch marks/thighs/toothpaste cap protocol making you buggy? What's your point? "If you compare yourself with others you may become vain and bitter; for always there will be greater and lesser persons than yourself." Your spouse is likely no better or worse than the sweet/cute/hunky person you think has it all together and, as a result, would never leave the toothpaste cap rolling around on the counter. I mean really, can you imagine?

Are we not yet to a place wherein we can acknowledge that there's enough crap to go around without having to make up more? There will always be people looking to ravage some little country and rape and pillage and use WMDs. Do we need to behave in that same way within our own families? In case you haven't gotten it yet, once you bring a little person onto the planet, it is so not about you. Gird up your loins, yank up those bootstraps, and stop it, already. Your babies and their babies unto the seventh generation need you to do better, be better than simply failing to beat them. They deserve everything you never had in the way of needs being met. And, even more, they deserve to have the parents they need, not simply the minimum we can provide them as we pause for further navel-gazing, rapt in our own self-pity.

When faced with a moment of panic, the urge to turn away because I'm in too deep, unable to figure out the quagmire at my feet, the emotion and complexity of a particular moment with one of my kids (or any number of other interpersonal situations), I've found that the only thing that works is to breathe a prayer and step off that cliff into the mess. Dive down deep. It is part of being human. It's a dirty business. A profoundly sticky, messy, even bloody business. But it is Why We Are Here.

"It doesn't happen all at once," said the Skin Horse.

Becoming human is a lifelong journey, during which we have to be willing to have our corners knocked off, the fur worn off our velveteen ears, to love and be loved without reserve, no matter the perceived cost. It requires humility and a willingness to be where we are regardless of how it looks to anyone else. It means that we must stop believing that everyone else has something better. It means we must be willing to acknowledge and revel in the glory that is, right where we are.

It is very, very hard. It is almost impossible to do this well. But don't you remember? All things worth doing well are hard. And the rewards for yourself are astounding, even more are those for your offspring. Clear out unto the seventh generation. Perhaps beyond.

If you are someone struggling in this, I heartily recommend The Blessing, The Traveler's Gift, and keeping a gratitude journal. Please, please don't let another minute go by without acknowledging how important this is. If you can't step outside of yourself for your own happiness, go peep in at your sleeping babies and do it for them. If you can't do it for your own, do it for mine. I need you to do what you can to make this corner of the universe a safer place for my kids to grow up. I have great expectations for this next generation, but they won't make it entirely on their own.

Also? We, the current adults, are not alone in our journeys. We have each other and our Creator. We will encourage one another and expect miracles. We will be astounded regularly at the beauty surrounding us.

Last week, as the kids and I were sitting in traffic, singing rounds of "Where is Thumbkin?" we glanced to the left to see the most spectacular rainbow I have ever been privileged to spy. It was a full bow, with more than a hint of a double to it's right, the second having wider bands, almost double itself. Up at the top of the full rainbow, the arch was nearly full of smaller ribbons of color, repeating themselves on the vertical. As we crept around the bend in the freeway, the color of the sunset bouncing off low clouds cast a toasted, blushing peach color over everything. The wetness of the trees and grass, the river, the traffic, all glowed as if lit by the hands of heaven. We were still singing, softly, in rounds, for the first time ever, struggling to keep the melodies running without blending into the next person's voice. The sun shot white gold rays through distant clouds at the horizon and dropped behind the mountains, no doubt shy after such a flagrant display.

My days leave me tired, sometimes without seeming to have much opportunity for recharging, for taking the spiritual nectar and leaving the pith, for even swallowing at all. But in the middle of the crazy, chaotic stretches of hours, the still small voice whispers, the piercing loveliness is there to be had, if only I will stop. Breathe. Acknowledge that it exists. Even with the spilled ketchup, the stalled traffic, I can have a space of bliss with my kids. I can be temporarily blind to the fights they've just had, overlook the complications for a few minutes, and just be with them.

At a certain wedding, the pastor talked about Christianity being all about being with your friends. That it was what Jesus was about here on earth. The being. This, I would venture, is what our Creator wants to have with us. The being together. Perhaps our time here is a trial run? Perhaps we can get past our discomfort at our own inabilities and get on with things?

My oldest prays at bedtime, "thank you for this beautiful, beautiful world," and in the next sentence asks for special help for those suffering in floods, fires, earthquakes, tsunamis. He is good at seeing what God has made in the midst of destruction and irretrievable loss. He knows that it's true: we are all broken, lacking in velvet, a mess, yes. But it is not all that we are.

Be more. Choose that.

May you rest well and rise renewed. I know you need your rest. You have those kids who run you ragged. :o)

Yikes

Here's a small dose of panic. For the full effect, read his article on earthquakes too. Tra la la.

Hat tip to L for the link--I'll be right over for butter.

Odd things

So I called for directions yesterday after noticing on the urology website that there was mention of the dept having moved. Apparently I had the wrong number, because I got directions from a very nice lady who assured me that in fact we wanted to come into the hospital, not go to another building, and? She was wrong. So we missed the appointment altogether. Q had been in his car seat off and on for hours by then, traffic being what it is when trying to make it to a four pm appointment, and he had just plain had it.

But we weren't done, oh no. I reached the pediatrician's office and, since we had to drive past it anyway, just went in. Yesterday Q's diapers were drier than normal and something like urea, but not like urea, was present. I showed the diapers to the nice doc (not our usual) and he didn't know what to say. Q has had a fine little rash over his trunk and a bit on his fat little bum yesterday, but it was of course gone when the doc looked. Otherwise, there was no redness, which there would be if there were an infection (UTI). Q's temperature was just 99. There was less discharge last night (of whatever it was) and hopefully it will be gone this morning with no further effects. Meanwhile, the urology appointment has been rescheduled to October 24 and I have a urine collection kit in case it's still there.

Last week I went to pick up the van from having it's Service Engine Soon light rechecked (it had been in the previous week for broken parts, etc.). As I was leaving, the nice man (in his 60's) at the counter mentioned that he was a single parent (for his grandson) and boy, it's hard work. "It sure is," said I. I mentioned that I'm doing the same, with five. He said that dating sure is hard. Not that there's much time for it. But people mostly have enough to deal with without taking on anyone else's kids, he sure doesn't want to worry about someone else's kids, especially having already raised four. And then, to me: "I mean, let's be honest: nobody wants you... with five kids."

Wow. So is it just me or is that weird? I can make up my own negative internal dialogue, thanks, without any help from strangers. I think part of my being so startled at his comment is that I am so not in that mode. I can't imagine dating. I can imagine wanting to--I liked being married. A lot. But one doesn't just replace a beloved spouse, especially with young kids in the picture, especially with issues like Q's. Still shaking my head.

I've been up for hours already, turning things over in my head, praying for folks I know going through some really tough stuff, praying for the nice people at my attorney's office, praying for some pregnant mamas. Off to the shower before rushing about for the rest of the day.

Hugs to you and your families. I so miss that sacred space of hearth and home and spouse's embrace... Tomorrow is another court date--as always, prayers for cool heads, clear thoughts, the wisdom of Solomon, are all appreciated.

Peace.

Another update

Today Q had his appointment with the geneticist. What a nice bunch of people they have there.

Oodles of forms, hours of family history, questions and answers, and in the end, the working diagnosis is lissencephaly--as originally explained by the neurologist in May. However, the geneticist suspects that Q is having polymicrogyria. In order to figure it out, she's sending his MRI off to her friend, the "world expert" (as she put it) in this. I think he's a neuro-radiologist and his opinion is so much in demand that it will be a few months before we hear back from him. But that's okay, because the bloodwork will take about that long to come back. Meanwhile, if anything should move along more quickly than expected, I will hear from them right away.

(I am feeling that same sensation of being grabbed by the nape of the neck for battering-ram duty. I do not like it. I had nearly forgotten how it felt.)

The geneticist also noted that she thinks it important that the neuro-radiologist address the issue of Q perhaps having had some white and gray matter reversed--each having ended up where the other was supposed to have been. This, apparently, is what indicated to the nice neuro guy the vastly increased likelihood of Q developing seizures. Therefore, the rhythmic, repetitive motions which he sometimes has should be watched closely. If anything changes, Q should be seen and perhaps (probably) have another EEG. Also, the geneticist agrees with the PT that it would be a good thing to pursue a swallow study to see what exactly Q can handle orally, especially since he does seem to be having reflux, which goes right along with the profile of these condition(s).

After the poking and bloodwork of the day, I can only imagine that a swallow study involves irritating his gag reflex beyond what he can stand. . .

Of course, I feel a flickering peripheral suggestion of vomitous rage at all of this. Same old, same old. Someone's free will squandered vs. giving up anything I have, indeed, my life to fix this for Q. It makes me want to knock certain people to the ground, frankly. Repeatedly. Perhaps perpetually, until they can give some indication that they get it.

So. Thanks for the prayers. They're keeping us afloat. Q's third cold in as many weeks is getting better and I'll head off to bed to grab a little rest before he gets up all snuffly again. His next appointment is next week with urology--to address his communicating hydroceles.

Anyone find my big ol' box of boring yet? How about that magic wand?

'night. Give your beloveds extra hugs and kisses from me.