Saturday, January 27, 2007

The week, in review

Or part of the week, anyway. (Deep breath.)

Q's Trileptal increase has gone well. The boy was giggly and giddy this evening. He and G were playing--Q grabbing at G's face and laughing like a maniac when G pulled away. They must have done it for a half hour earlier in the evening (it's only 12:30pm here, so I'm pretending it's still Friday. Bear with me.). There's just nothing like baby giggles, is there? Still earlier in the day, a little person placed a little toy rattle that's shaped like a phone receiver next to Q's ear and he talked to it. Really! Babbled for almost a full minute! Plus, my dad swears Q's trying to say "balloon". Fun-ny baby.

Q had his first bath in his bath seat tonight. I swear the boy is bent on drowning himself. In the pre-bath seat era, he would twist himself around to get to the water with his mouth (all things must be tried orally) and end up snorting a quantity of it, giving his sinuses either a good cleaning or plenty of bacteria for a nice little infection, and freaking out his mama to boot. In spite of lots of spluttering and choking, he always wanted to get right back to trying that again. So I got him into the bath seat and he started to slowly lean and scoot, scrunching himself down toward the water, trying once again to snort up the contents of the tub. The bath seat slows him down considerably, but I'm sure with practice he'll figure out how to get around this too.

The chair is working nicely. I've had to wash out the straps a couple of times already to get the cereal out; Mr. Drooly-pants likes to sneak some right out of the corner of his mouth and then work it in with his chin, the goofy boy. Nothing like rice cereal to make a lovely paste, eh? The chair is so adjustable that Q joins us when we're playing a game on the floor, at the table at mealtimes or if school is in full swing. Funny that he hasn't yet fallen asleep in it, especially with the Trileptal increase making him more sleepy. Perhaps he's so stimulated at being upright and interacting that he can't shut off in the chair?

I asked Q's PT this morning if she thought that we should be looking ahead to ramps and other significant modifications to the house for Q, seeing as how we don't know how long 'til he walks or how efficient he'll ever be with it. She said she thought it would be smart to begin looking at that now. (Aw, crud.) Also, I'll be contacting the nice DDD lady to ask about coverage for a therapy swing for Q. I have the plans needed to build one and could probably order the parts and eventually figure it all out, but I lack time. Energy is also in short supply. All the nice people here are sorta overwhelmed with their own perfectly legitimate stuff--I believe it's called "a life"? So I'm going to ask about getting it covered. We'll see.

In other news, I made it to the nice doctor yesterday. We discussed my general feeling-like-crap and it's symptoms. (Why isn't there some little packet of stuff to swallow for this? Get right on that, will you? C'mon. You'll make billions.) Low-grade fever, chills, seriously nasty back pain, yadda yadda. (TMI alert--breast milk discussion approaching--you have been warned) I'd had a plugged milk duct about two weeks ago, but with careful attention, managed to head off a full-blown case of mastitis, thank God. So the end result of my visit? PT, Muscle relaxant and Vicodin scrips--a hoot, really, because I've never ever in my life, not even for those hideously impacted wisdom teeth, or stitches following babies, finished a narcotic Rx. Also, the lovely Internist (and she really is--I'd recommend her in a heartbeat), as we were wrapping things up, said, "Well, C. I don't know. I think you need to take better care of yourself." (Ya think?) "Better nutrition, better rest, better sleep." (Hmmm. So you'll be coming home with me to help out with that?)

Yeah. I know. Sigh. . .

I'm feeling a little better every day and, Lord willing and the creek don't rise (don't lay any bets on that one this winter), I'll finish up this nasty thing, whatever it is, and have some smoother sailing ahead. I'm looser in my back today and feeling perkier. Hallelujah, glory be. Somehow, through all of this (more about breast milk--brace yourself) I'm managing to continue to produce quantities of what looks like it really is almost pure cream. Huh. Our all-time favorite pediatrician teased me a bit with K (#3) when she had gained, in her first 17 days of life, about 18 ounces over her birth weight: "What're you, producing cream?" Apparently so. (Email me and I'll tell you how I know.)

Since I managed to get to bed before midnight last night, I'm going to head that direction now and try to take better care of myself. Maybe, while you're working on a packet for that other thing, you could come up with one to swallow for Taking Better Care of Oneself? Thanks. Let me know what I owe you.

Sweet, lovely dreams to you. Extra hugs and kisses for your babies and beloveds.


Thursday, January 25, 2007

Email from my Dad

One evening an old Cherokee told his grandson about a battle that goes on inside people. He said, "My son, the battle is between two 'wolves' inside us all.

One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority and ego.

The other is Good. It is joy, peace, love, hope, serenity, humility, trust, kindness, benevolence, empathy, generosity, truth, compassion and faith."

The grandson thought about it for a minute and then asked his grandfather, "Which wolf wins?"

The old Cherokee simply replied,

"The one you feed."


Some days it's hard to keep up with everything.

Q's been sick. He was croupy last week and has been having Pulmicort and Xopenex in the nebulizer to address the crud in his throat/bronchii. The other night he went down at 7:30pm, and got up at midnight. My mom got up to be with him at 2:30am, so I slept 'til about 4:30? (It gets blurry here, sorry.) She took off for work around 6, and he slept until I had to get up to haul kids out for counseling--I woke him up about 8:30 so we could leave. Oy. 'Twas a long night.

As he's been on solids a little bit (though I cut that back because he was choking with the food and phlegm last week), he's gained a little weight--he's now about 23 lbs, 30" (50th percentile for both). So he was having more seizures with the virus--not unusual for him to have a few small "breakthrough" seizures with illness. But he was scheduled to go in the beginning of March to adjust seizure meds for probable growth anyway, so since the seizures haven't gone away with him now feeling better, I called up the neurologist's office and he increased the dose. The major side effect of his med is sleepiness. So the boy s l e p t last night. Sadly, I was up with back pain, so I didn't get quite the full benefit of his long night o' rest. Still, it's lovely to have rested some. Any sleep is very, very nice. Ahhhhh. . .

I'm going to go in this afternoon about the back pain. I've been taking enough ibuprofen to kill a horse, can't really avail myself of regular doses of narcotics (since I'm the adult in charge) and just need to do something else now. It's been a week; making the owies go away would be awesome. Have you ever noticed how much attention the floor needs when one has little children? I can't so much bend over to address it these days. Thank God for friends and family, man. Sheesh. I should say too that the kids have been great--I told them that they'd need to step it up since I'm a basket case right now. They've done a great job of doing everything from wheeling the trash cans out to the curb right away, to vacuuming, to retucking couch covers, to not jumping on me. Heh.

So that's what we're up to here. How're you?

Saturday, January 20, 2007


Have a need for something to read? Check this out.

What do you think?

Friday, January 19, 2007


Okay, people, it's time to de-lurk!

Go post a comment and tell me something about your favorite activity. For example: "Hi. My name is Puddleglum and I enjoy fishing, but only if I can complain while doing it." Or: "Hello. My name is Joe. Long time lurker, first time commenter. Thanks for taking my comment. I like to garden because I somehow produce the biggest tomatoes on the planet." Of course, I would need some sort of proof of that. Perhaps a picture?



Thursday, January 18, 2007


Well, the nice lady was here and will be back again Tuesday next week so we can work on an Individual Family Support Plan (IFSP). While I was signing the permission-to-share-info-between-organizations papers, Q, sitting on my lap, reached out and grabbed the pen. I (trying not to shout with glee) removed it from his hand so I could go on signing. He got it again, this time holding it firmly as I continued through the remaining papers. He put his other hand up and held the binder still (heh) 'til we were done.

S, meanwhile, has stated that Q is her "psychic." I'm pretty sure she means sidekick. She and K have snuggled up in S's bed all night the last two nights, so both have gotten stickers for remaining in their beds. Whatever engendered their fear of UFOs (?!) seems to fade in the presence of another living, breathing being--even holding Q calms their fears.

So next week will be busy. In addition to school, there's OT and a dental appointment on Monday, then DDD, WIC, court date, piano lessons, gymnastics on Tuesday. Counseling on Wednesday for the bigger four kids, maybe a field trip to pick up supplies for Valentine art projects? Thursday will bring gymnastics again, then therapy and library time on Friday. All this is dependent on how sick every/anyone is. Q's croupy again today. This is the third day of what promises to be a week and a half of the virus from hell, based on other's experiences. So far everyone else is healthy, but the incubation period seems to be about a week, so who knows.

At least the snow is going away! When I heard rain last night I just about jumped for joy. Silly, I know, but driving on ice or snow around here is like driving on half-frozen snot (hope you weren't eating there). It's true. It's hilly around here and the conditions are always horrid when it's below freezing--seemingly more so than other places. I don't mind it so much after living five years in a place that was wintry for real when it was actually the season (anyone for moving into a new house in three feet of snow?), but it's still nerve-wracking to slip and slide in transit, especially when so many people seem to forget how slippery things work. They slip. There's little one can do about it. Best not to fret, to plan ahead, be careful and get on with things. So today it's all the way up to 37F here and it's cause for celebration. Yee-haw.

I need to finish sorting through the piles of clothes in the living room and pack stuff to the appropriate places. I made it to Old Navy and The Children's Place again this week on the tip of a friend. Old Navy was having 50% off all their clearance items, so G has size 16 pants tucked away for his next growth spurt--they were between $4-$5 a pair. Nice, too. I picked up t-shirts at The Children's Place for $2.50 each, paid $15 for a very nice formal sort of dress for E to wear at the next Christmas recital (regular price was about $50?). We also got size 8-14 pants for the girls--for the next couple of seasons--same prices as G's. There were the sweetest little matching plaid pleated skirts with velvet ribbons and sparkly things (of course) that the girls can all wear at Christmas. I think they were about $7 each? Turtlenecks at Old Navy for about $2, a fleecy suit for Q for $4.50, a nice wooly sweater for him for the same. I hate to sound too dramatic over something as silly as clothing, but I adore finding things like this. If I can hit a great sale I try to buy ahead. I rarely have to spend time shopping for anything the kids lack, wardrobe-wise, and almost never buy anything at full price, meaning I spend less time in the stores which thrills me no end. (When did you last shop with five children in tow?) They're nice clothes at prices I can pay, bought and stowed for the little people I love. It fills lots of needs that aren't just about covering their little bodies to keep them safe from the risks of exposure in winter (or summer). By the time we fill in with things from doting aunties and grandmas, we're all set and with a minimum of fuss. And, dontcha know, I feel much less horror at tossing a pair of pants that had the knees loved right out of 'em when they were under $5 to begin with.

Off to do a little school, a little lunch, and haul the kiddoes out to tumble about 'til they're tired.


Tuesday, January 16, 2007


I had thought I was doing pretty well, considering.

I just spoke with a caseworker from the Dept. of Developmental Disabilities. They provide funding for things like respite care, equipment, etc. She seems very nice and will come by Thursday morning for a sit down chat so we can figure out how to meet some of Q's needs.

Here's the thing: there's no funding for respite care because children under three don't qualify.

It's been a while, but I cried. I guess I hadn't realized how much I had pinned on the expectation of that. Shoot.

'scuse me, I have to go bang my head against something. . .


I won't be doing this much, but here are some people who could use your help. Their little guy has the diagnosis that Q may be pointed toward.

Go look. Think about whether or not you might have something to offer them.


Saturday, January 13, 2007

Think, think, think

Here's a PBS piece on homeschooling. Watch or read. (Hat tip to Cheryl from TWTM boards.)

I find it interesting that the gentleman speaking on his concerns about homeschooling states (paraphrasing) that society has an obligation to make sure that children are growing up to be well-rounded people. Really? So how does one figure in the kids so steeped in pop culture that they don't have room for anything else in their little brains or life experiences?

I happen to think that often when one spots a kid behaving badly in public that it's probably just an example of someone getting to showcase the rougher part of their day. In the space of the same week I had a child howl, head thrown back, through an entire Costco trip. Several days later, in the same store, a very pregnant tired mama used my kids--including the former screamer--as an example to her son of how she was wishing he would behave. I smiled (also very pregnant) and told her that she should have caught us a few days prior; it would have been a different story. She rolled her eyes and said, "Yeah. Don't we all take turns?"

And we do. Kids are no respectors of circumstance. When their little brains short out they won't have looked around to make sure the neighbors are safely tucked in their homes.


(At the risk of crossing a line into the Land of Intellectual Snobbery...) There are some children (one would really be too many) whose experience dictates that being a rap star or dressing like their dolls (even if the doll looks like a junior hooker in training) is the loftiest goal to which they can aspire. This virtually guarantees that they will end up in a minimum wage job (because how does one train for those positions?) with no skills and little in the way of prospects, while raising the next generation of kids whose aspirations are just about identical to theirs. If one wishes to simply churn out a worker-bee type society, fine. By all means, invest in that. Bearing in mind that someone has to organize the worker bees, invent the projects which the worker bees will bring to fruition, to address the social, mental, physical, legal ills of the worker bees. Who will do those things?

Of course our society would not function without the "worker bees" and there is no shame in occupying such a role, as long as one does one's best in their work and it is honest work. I don't believe that we can dictate that everyone must have a certain set of expectations. There cannot be a cookie-cutter approach for careers or affinities unless we are willing to give up personal freedoms.

So how would one make sure that children are growing up to be well-rounded adults? And why does it become the responsibilitiy of the state to be considering this, except in the context of health and welfare? To what extent are we allowed to make choices for our offspring? How does one determine where to draw the line in well-roundedness for someone else's kids? Do I get to tell another person that their kid shouldn't idolize Ms. Fergalicious? My personal opinions on these things are quite firm and I raise my kids accordingly with what parts of their time I have choice in. But do I get to tell other people that it's inappropriate? Should they get to tell me that homeschooling my kids is inappropriate? What if one parent wants their kids to avoid those above negatives and the other doesn't?

Perhaps I'm not wondering "aloud" very clearly, but it's on my mind these days.

Out front

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Winter play

Somehow I doubt the solar cell got enough light to charge the battery that day.

I hope the bunnies are safely snuggled in while they await the return of the green grass (they mow the lawn). Frosty's guarding things while E and G play in the background on this. . .

My parents' Christmas present. I think they figured that if they amortize the expense over all the grandkids, present and future (#6 expected in May), the playset will more than pay for itself in time and gas saved by not having to drive to the park. Heh.
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After the storm

This was the nearest four-way intersection on my return from Q's vision therapy appointment. The high that day was about 28.
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Last night, when she should have been asleep, E came out to ask if in the coming week there could be a day cleared of school, and arranged so she could go with someone to shop from breakfast to supper time. I was a little taken aback, as one might imagine, and as I sat there blinking, trying to think where in the mommy manual one might find the answer to this, she says earnestly (with gestures), "I mean, I need to shop. It's just part of who I am."

Sigh. That girl's gonna need a job.

This morning, S was slurping her grapefruit. She paused between bites to say, "I just love this broth."

Sometimes I'm afraid I've no hope of keeping up.

We'd be at church except for the fact that Q was up at least once every hour all night. Between my little genius children and Q's schedule, I think I could use a shot of adrenaline. Maybe then I could keep up.

We're going to gather round the piano and do a little singing. Hope you're warm and dry--we're colder than Nome today. Perhaps it's the sleep deprivation, but that cracks me up.

Friday, January 12, 2007


Last evening I was making dinner, with interruptions. After behaving like an errant piece of popcorn hopping all over the living room, banging into stuff and coming this close to hurting herself, S was asked, no told, to jump in place while I counted to a hundred. She resisted mightily, for a long time, not believing that she had any excess energy to burn. Finally I walked over to her, got down in her little face and said, "You may jump or sit on a chair for four minutes. Right now."

So she jumped. I counted. I'd not even reached ten when she said,"You're right, mama. This jumping is fun." Not the point, but okay. She had to do it twice more before we got to bedtime. The last time, she said, panting, "Count faster, mama, my thighs are hurting." Funny then, that all that jumping neither acted as a deterrent to further hopping and whirling nor did it make her as tired as it one would think it should have.

Today in therapy Q got to try out a "kid cart." It's a little alarming to the uninitiated (me). He sits up like a big kid in a structured, softly upholstered seat with straps to keep him from sliding around, a headrest to keep him positioned properly. They'll be modifying the seat with a little foam in the back and sides to make it just his size, so his legs fit at the proper angles at the proper joints and he can sit up without flopping over. He has a clear tray to put stuff on. There are two wheeled bases made with heavy duty steel tubing, painted blue. One base for use in the house, adjustable in height and reclining rather like an industrial high-chair, one smaller, collapsible, for use out and about as a stroller. The thought of hauling him around in what looks like a teeny wheel chair on stilts is a bit daunting, but hey, that's not the point now, is it.

While the PTs were sitting him up in it, he started feeling around, noticing the shiny metal tubes near him where the tray attaches, and going after them. It was neat to see him working to interact with a new thing in his environment. I wonder how he'll be with this over the long term. We'll probably bring it home next Tuesday after speech therapy--it's being adjusted and resewn for Q before then. It'll give me time to talk to the kids about this new piece of equipment and what it means before we have to get used to another new thing. Won't it be a hoot to get him in this next to the table when the big kids are doing schoolwork? He already shows signs of wanting to keep up with his sibs, getting all excited when they're talking to him.

This afternoon he fell asleep in the backpack for the second time this week while I was cleaning up and doing school with the bigger kids. It's so funny to take him out of the pack and lay him down. Often, when he's being laid down for a nap and he's mostly asleep, and grateful to be so, he'll burrow into the sheet a little, grinning in his sleep, then heave a sigh and go limp, his open little mouth bracketed by pillowy cheeks. The very picture of utter relaxation.

Yesterday we ventured out on icy streets for Q's vision therapy appointment. I almost didn't go because the roads have been atrocious. It took more than an hour to get there--it's usually about a 25 minute trip.

So about that. Let's take a moment to address some basic safety issues, shall we? If you're driving down a long, curvy, very steep hill, on compact snow and ice, do not tailgate. Doing so earns you a special place in hell, in no small part because if you can't keep yourself from tailgating in very bad conditions when you could just pass in the other lane, you are guaranteed to possess a host of other self-control issues as well. (On the flip side, if someone is tailgating you, don't become overwrought and take leave of your senses. Assume that someone's bleeding out in their backseat or is, perhaps, in the midst of an aneurism. Or labor. See how you already feel more compassionate, less retaliatory?)

Also? If you already can't control your vehicle, smoking or talking on your cell phone while driving will not help you. In fact, you may experience greater success in safely reaching your destination if you put your hands at ten and two and have someone solder them in place. Absent that, at least resist the urge to fiddle with your radio. Do not attempt to apply make-up while navigating any road. Maintain a decent speed so you don't slide off the ramp/hill. Physics still apply. Even if you have four-wheel drive. Just because you can go doesn't mean you can stop. Shift down to slow down when approaching an intersection--it will help you to not slide right through it. Steer (calmly, slightly) into the skid. Always travel with emergency provisions, even if you're just going a short distance. And last but not least? If a road is closed, bear in mind that the sign does not have fine print reading: This ROAD is CLOSED to everyone. Except you. Because yes, you do have special powers. Please proceed with abandon.

Rant over. Back to vision therapy.

Q was one of two patients who made it in that whole morning, so we had plenty of time with a very attentive doc. Turns out that in fact his vision had progressed from 20/400 at the first visit, to 20/310 over the summer, to 20/80 back in early November. Woohoo!!! This would explain some of the steadily increasing interaction, no? Yesterday, Q measured at about 20/128, because (we hypothesized) he hasn't been quite himself for the last few days. As I believe I've mentioned, a virus, even a very mild one, seems to drop his cognitive function pretty significantly for a few days, then he sort of resurfaces or comes back out of the cave. It's odd compared to any other reaction to illness I've seen in kids. It's as if he's there, but not there. Sort of like what we surmised were "background" seizures he was having before the Trileptal. He's more "awake" or present and much more consistently so since he started the meds.

Otherwise the nice vision therapy doc was impressed. Q got a good fix and focus at closer range than he has in the past, veered away and returned to his target (my face) repeatedly and showed greater attention and response than he has before. We noticed during the exam that he has a tough time getting his right eye to cross the midline (looking across the bridge of his nose), so we're going to try glasses. Little blue wire-rim ones. They're the smallest size made in this brand and still, they'll have to have the earpieces shortened. Blue looks good on the boy, and dare I say they're cute? Well they are. He'll wear them for therapy purposes, rather than for the usual corrective issues. We're going to have a piece of translucent tape over the left lateral (outside) half in order to push Q to bring that right eye over. This particular lens seemed also to sort of even out his tone, make him sit at attention, as it were. They'll be in about three weeks from now. I don't know how long he'll wear them or how useful they'll be. All that will play out. Shoot, maybe the boy will end up having a leap forward after he's over this bug as he sometimes does after an illness and he'll just skip needing them at all. That'd be just super, wouldn't it?

I do wonder about some things in regards to his trouble with just sniffles and even light colds. First, I wonder if he's having some sort of neurological inflammatory response to the bug, since he seems more likely to have loss of proprioceptive function (ability to tell where one is in space or in relation to objects) or even to have seizures if he's not feeling well. Would he be better off if I were giving him ibuprofen around the clock to address this? Or could it be the mucous which seems to be almost entirely postnasal in nature? He spits up more when he's sick, which I'm sure is an issue of drainage into his then upset tummy, but it could also be related to a dip in cognitive function and therefore sphincter muscle management (I'm guessing here as other tone drops with illness). And what about the fact that he has some swallowing difficulties, some snot drainage issues, and sometimes has trouble managing extra saliva and/or his tongue? Is it possible that in kids with microcephaly they are experiencing some "flatness" or lack of dimension in their ears/nose/throat because their brain isn't properly helping to expand those internal landmarks by growing and pushing the skull out further as would happen in a child experiencing neurotypical development? I wonder about these things. I don't know if anyone else wonders or has any answers, and I'm certainly in no position to analyze existing data, much less collect my own, but there seem to be enough of these issues overlapping in kids with PMG that it makes me very curious indeed.

He's asleep now and so are all the other ducklings, so I'm off too. To sleep, perchance to dream.

Be nice on the road, eh? Thanks. No, really. And blessings to you as you make your way in this crazy world. Go have some dreams yourself.

Saturday, January 06, 2007


All in a row. (more from the previously mentioned hydrology field trip)

Q is asleep, so I'll be brief. Today in PT, he reached out and patted buttons to restart lights and music after they had stopped.

Take a minute and let that sink in.

He's got a very rare congenital brain malformation, he's only almost one, has had severe mental retardation forecast as his future, but he can make things happen when he wants them to. Truly, for most of us, is this not the definition of a successful experience? To set out to do something and to do it? Heck, for many of us it's more than can reasonably be expected in the course of a lifetime, never mind any other time span.

Also? No feeding problems yet. This means he'll probably not need a feeding tube of any kind, at least not in the normal range of his experiences. Plus, his seizures are under control, he seems to be getting a little more visual feedback, and he interacts verbally. Sometimes that's making his own noises and responding with various noises to whatever one might say back to him, sometimes it's him copying one's goo-ing and gah-ing.

Things could be so much worse. I am grateful for what is.

In other news, today three of the above pictured boys discovered part of a skeleton in the nearby woods, leading to all sorts of wild speculation in their fertile, imaginative brains. It's probably the deer that the local fish and game guys were looking for a couple of years ago because it was limping, wandering, likely looking to be in the throes of a wasting disease. Whatever it is, it's definitely not human. The positioning of the ribs is all wrong and the hips/pelvis (what little there is attached) do not appear remotely bipedal in orientation. So there's that at least. Can you imagine the nightmares that would spawn? And not just for the youngsters, either. Yikes.

Refreshingly, they hied themselves off to play a Bible trivia game (I wasn't aware we had one) in order to recover emotionally from the shock and horror they felt at such a find, and chose to seriously downplay all discussion of the matter in front of younger sibs in order to minimize potential trauma. When I told them to head out from "the scene of the crime" (their words), all walked out a few steps and said, "No way are we leaving you here." All this at their own behest. And my face (and dignity) will eventually recover from the tree branch I whacked into as I was trying to take pictures (it's easier for the elderly property owners to look at a digital camera than to hike out into the wet woods). But the bridge of my nose hurts and the skinned spot is gonna stiiiiing in the shower. (Pardon the little whine. I just need a pat on the head. Thanks.)

So. It's been a good week. The kids are all here, all in one piece, the nightmares are subsiding a wee bit, I have hope that we'll be able to get all the girls to bed before 11pm and to remain in their own beds all night in the next week (it's a process, and it leaves me w-i-p-e-d). We're easing back into schooling and Q is making strides like a big boy.

God is good.

May you revel in your blessings even as they grow and spread all around you. May you feel as blessed as I do. Tell your family you love them and why a couple of extra times this weekend. It will help those blessings to grow and spread.

Q's still asleep. Hurray! G'night.
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Thursday, January 04, 2007

Field trip

The real thing.

We were wrapping up our hydrology unit--what better way to celebrate than by getting wet? And you know they did. Heh.
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Here's some more info, this time on neuronal migration disorders.

Slowly, I'm finding enough "stuff" to help me understand what this is all about. Now to get my hands on some of those articles cited.

Q goes in for vision therapy again 1/11.

Q news

So I said I'd post about the week of appointments Q had while the kids were away. . .

That Monday morning, in our usual OT slot, he was practically inconsolable. Not his usual self. The OT (truly lovely, she is) and I both thought is was a combo of too many changes (prolonged power outage had displaced us, kids were gone, "visitation" was more stressful than it had to be) and perhaps a virus. He later developed only minor sniffles and a very light cough that lasted only hours. His nervous system is more profoundly affected by bugs, but this did seem like it would have to be a combination of all the above, which makes me seriously wonder about those circumstances which can be controlled and the wisdom of, well, never mind.

That afternoon, I'd scheduled a last minute visit with the pediatrician (we were supposed to have been on the road to CA by then, remember). We discussed the probable need for other interventions and/or consults with other specialists (ENT, GI) and at what point one would decide to go ahead with such a thing. I told her that I'd been reading exchanges between parents of kids with PMG, that it's likely going to describe what's up with Q's brain, and that there seem to be some behavioral similarities. Like: sleeplessness, oral/facial musculature issues (differing depending on the sub category of diagnosis), kids "sounding snuffly at night" even when they're clearly not ill. We brainstormed a bit about that and addressed Q's meltdown from earlier in the day. She's an absolutely awesome pediatrician. She isn't afraid to acknowledge that, with Q's issues, she'll probably never see another kid remotely like this. In fact, she brought it up. Then we talked about the ways in which to track down specialists that might have ever in their long careers run across PMG (very unlikely). She addressed the other issues which might be stressing Q and will be invaluable in that department as well.

Q had speech therapy Tuesday afternoon and was no where near melting down at that point (being back home with the power on had to have helped some). His ST is great, always pushes him a little more than I would, which is probably fine, even if it does make me cringe a little. Sometimes being the mama sucks.

Wednesday I drove to the children's hospital to have Q's blood drawn. I got to argue with the lab people about whether or not the emla cream (numbing cream--it's now called something else and works in 15 minutes instead of 30--thank God for small miracles) would be "worth it" since they'd have to "hold him down anyway."

For those of you who may not know this about me, a brief heads up. I will roll over like a puppy lookin' for a good belly rub for people who are nice, even if we won't ever see eye to eye, but mess with me, be rude to me, or step over the line where my babies are concerned, and I become the definition of "heels dug in." If you tick me off, you'll be lucky if I've had enough sleep to be polite in my firm response. If you push me further, you will probably remember me for a very long time. Yeah.

Lucky for the lab secretary, I'd had some sleep. I told her (and the large cranky phlebotomist standing behind her) that emla had worked very well for him the last time we had to do this, so well that he didn't need holding down, just steadying, and how did I go about getting it, smile, blink blink, thankyouverymuch? Turns out one needs a prescription (gah) so we had to chase down the geneticist's assistant (who wasn't supposed to be in the hospital that day, but was, again with the small miracles) and I grabbed a sandwich while I waited for her. She's awfully nice. We got that cream right on there. (If you ever have to do this with your kid, make sure it's applied ~1/3 on the distal/hand side of the elbow crease, 2/3 on the proximal/shoulder side so when the needle goes in and up the vein, they are still numb. Yup. You're welcome.) She had someone with her doing training for this, which I never mind unless they mess up with the above stated issues, and we chatted about the same basic stuff I'd covered with the pediatrician. She reminded me that the anecdotal stuff is interesting and all anyone really has to go on at this point, but the really useful information will come out of the meta-analysis of the study Q is now a part of. It was totally Providence that we met up: I had thought I'd returned a signed consent form for that study months ago, but they didn't have it and were planning to contact me that afternoon to inquire about it. I signed it while we waited for the cream to kick in and then headed back to the lab.

When I arrived there, the large cranky phlebotomist waved me off to someone else, no doubt assuming that I'd be no fun in the room. (Imagine.) The very nice guy who walked us back and did the blood draw, who I swear I've never seen before, went on and on in baby babbles to Q about how big he'd gotten since the last time we were there. ? I decided to overlook this oddity in the hopes that it meant nothing for how good he was at his job. It went very well. He got it on the first stick and had the foresight to use a syringe for the 5ml needed instead of just a tube so Q wouldn't clot so quickly that he'd have to get stuck again--happened last time. Another hot tip: ask for the butterfly needle. I don't know why, but it hurts a lot less (personal experience here) than the "regular" one, which is always good.

Thursday we saw the neurologist (scheduled months ago--I'd forgotten to cancel the appointment). Q was pretty much back to his regular self by then. Dr. V came in speaking Donald Duck to Q, who had been just about to fuss a little, wanting entertainment . Q froze. Dr. V paused. More Donald Duck. Q oriented to the voice, broke out into a big grin, said "nGoo," and dropped his eyes, ducked his head (reorganizing his brain in the presence of overstimulation). We all laughed a little. And the neurologist said, as he sat down: "Well, he's clearly happy to be here."

And he is. Parents who've survived colic may recognize the significance of that statement somewhat more easily than the rest of the general public. Having done so myself, I have since been profoundly grateful for happy babies, my own and all others--really. I do thank God for this. But with Q, it's more than that. His wiring doesn't allow for things to be easy. If there's something going on with him, it will more likely than not be quite complicated, require loss of sleep on my part, some unlabelable fussing on his part, and it's all hard--learning Q is like learning to be human all over again. All the definitions are different. And just enough different to keep me feeling sort of half a tick off. As if I keep waking up in a Twilight Zone version of Groundhog's Day (not that either isn't weird enough on it's own).

So the fact that he's happy to be here, and he really, truly is, is a living manifestation of God's grace. I am on-my-face grateful for that every single day. This could be so much worse. Imagine a baby in pain, with no way to work out what's wrong. Perhaps the crummy wiring thing just reversed enough white and grey matter to keep them constantly sad. I think I would want to throw myself in front of a train. What worse hell for a parent? To have a child whose needs cannot be met. To want to, to need to make it better and not be able to. I am blessed in this: Q is happy to be here.

I asked the neurologist about terms. As I've been reading about kids with PMG, I've noticed that there's often a trailing list of other diagnoses. He confirmed that because Q has had seizures (though the Trileptal is working beautifully and his sodium levels are good--yay!), we will say that he has epilepsy. He confirmed that Cerebral Palsy is a useful term for Q, but more because people look at you like you have three heads and are sprouting a fourth when you tell them that he has partial Lissencephaly or Polymicrogyria. When you consider the relatively small number of people diagnosed with this kind of brain malformation, it's hard to blame even the relative experts for having that look of "Lissen-what?"

That's about it, I guess. We head back to the neuro office in March, anticipating an adjustment in meds. I need to get another vision therapy appointment set up.

Oh yeah: Q started solids yesterday. Breastmilk and organic rice cereal. So far, so good. No aspirating, no reaction to the food, and only a little spoon biting. Hip, hip hooray!

Well then. Further up and further in (to quote C.S. Lewis).

Deep breath. Off I go.

(He's awake again. Ack.)