Life

Monday was a court date. Not much to tell--the pertinent issues have been continued to the next court date, mid-July or August? Nothing's scheduled yet, as far as I can tell. The judge denied his requests based on timing and "lack of cooperation". The next date will handle financial matters. As much as I would like the stress to go away, I'm trying to just breathe and let it go. I'm 100% positive that there's something bigger afoot here than what I can see, so yeah, just breathe in, breathe out. I'm praying that he'll make some good choices. If he doesn't, well, consequences for one's actions arrive, one way or another. It's very sad, really very sad. All this represents to me a waste of a perfectly good person. And then there's the kids.

Sigh.


Q is still taking clonazepam. He'll start Reglan as soon as the insurance company approves it. He's been hungrier lately and really does need more food. The problem has been that feeding him more than two solid meals and nursing several times a day results in lots of spit up, crankiness, and "constipation"--for him, an inability to move what's there, more than what one would ordinarily think of as actual constipation. The Reglan should affect his esophageal sphincter, holding the food down a little better, and should help the stomach empty a little more quickly, thereby making room for the meals he wishes he was eating. His height (6/25) was in the 60th %, his weight in the 25th %, his head in the -3rd %.


Sigh.


Sometimes it's a little much to wrap one's brain around, you know? If someone had told me three years ago that this is what I'd be doing, I'd have been stunned into speechlessness. Especially since I didn't so much plan on having a fifth child--my little bonus guy. On the other hand, Q is saying "hi" more and more often, still says "go", started saying "no"--only appropriate about half the time, but he's vocalizing with intent, so hurray! The other night S was standing behind him, emphatically saying she wanted a bath--his favorite of all activities since he seems to be actually a fish more than a boy. Q wrenched himself backwards and around to holler "BA!!" at her. A moment I will cherish, it represents major progress: the "b" sound is much more difficult than the sounds he makes more regularly, and he communicated exactly what he wanted in a distinctly timely fashion. Awesome.

Q has his new weight bearing splints, his new neoprene splints to hold his thumb are done, he has a little neoprene suit with boning in the back to help him be upright when he's propped to sit, his boots are yet to be scheduled for molds and fitting, his swing needs to be hung, the switch had to be sent back because they'll only pay for one and the therapists wanted the one with two buttons. And I rescheduled his vision therapy so I can keep the appointment I made to get my hair cut today.

The septic system is having issues. I did seven loads of laundry yesterday (about half of the week's worth), ran the dishwasher once (the usual being more like two or three times), and we couldn't run any more. We've gone to paper everything until the guy can get here in the morning. Some trees have to come out and he has to redig part of the drain field.

E is recovering from strep and some of us are coughing up green crud. S still has an "itchy bottom", despite the appropriate application of all appropriate substances and thinking we'd kicked it. Argh. I'm planning to give it the weekend and then take her back in.

I wanna go back to Tahiti. There's a beach on one of the tinier islands that's pink--it's made of crushed seashells. Pink. A pink beach. I wonder how much it would cost to get us all there? Hmmm. I wonder how the kids would do on an eight hour flight? (I wonder what homeschooling laws are like, what therapies are available there. E has recently expressed a desire to learn French--I wonder how long it would take the kids to pick it up?) When we were in Tahiti for our tenth anniversary (you'd be surprised at how much you can see there for not much money), we didn't go to the island with the pink beach. We'd planned to go back and take the kids--as soon as they were big enough to get into snorkeling. I think they're big enough, since they're all part fish as well, and I'm ready now, thanks. I bet Q would like it there too. After all, there's plenty of warm water. And the kids all like pink...

Back to the daily stuff. Say it with me: "I think I can, I think I can, I know I can, I know I can. . . I did it."

Hey, there

Thanks, all, for the hugs, fervent prayers, wishes of blessings. They make all the difference. Always have, always will. (Insert cheesy but earnest grin.)

The court news for the week, in summary: It's all been continued to Monday, 6/25.

In walking the fine line that honors both truth and grace, I've been vague in speaking of the ongoing legal proceedings taking place between the kids' dad and myself. I'll continue to be so, since there's not much to say that's both honest and kind. Whatever else takes place herein, I deeply need to be able to look back on all this and know, know that I did my very best to be polite and stay out of my own way and that of our children. They deserve at least an occasional pass on large portions of the crap that floats their way. So I'm trying to minimize it from here. I realize that in so doing, I run a glaring risk of being the bad guy in their minds. Again, that fine line. But what're you gonna do? A mama loves her kids, talks endlessly with, to and at them about what lessons we might learn from whatever circumstance we happen to find ourselves in. A mama hammers constantly on leading with love, compassion, mercy, understanding. A mama hopes, prays, breathes her kids are getting that the whole point to being a Christian is the relationship thing: it's how we deal with each other. Period.

So I hope that's at least most of what's driving my efforts here, even if it is leaving you all in the dark. You can call me for a more detailed explanation, if you like.

In other news, I'm in love. With Homeschool Tracker Plus. Goodness, I'm just cheesy tonight. Must've gotten some sleep. Heh. Back to HST: I've spent hours on it and haven't even begun to input lesson plans yet. But I don't care. It's been nearly twenty years since I learned a software program by reading the documentation, but this is not only working, it's replacing my desire to do other things. Clean house? Who needs it? I have details to select! After the presentation the nice HST lady did at the homeschool convention thingy, I was sold. I've downloaded the free version twice (once in CA, once here), but have loved the portability of my Lakeshore Learning Center paper planner so much that I just "never got around to it." Not possessing a laptop which could be carted to swim lessons, the library, park, etc. for my favorite kind of planning--squeezing it in whenever one can until, voila! It's all done! No more of that.

Here's what sold me: First, the legendary tech support. Everyone who uses it raves about the awesome HST people. Second, only $35 and free upgrades for life. Boy, are they worth it. The spellcheck feature alone is worth it, never mind the color coding, drop and drag, and general facility. Yea, verily, this brings us to the third reason, the singular shining aspect which drew me as Paris Hilton is drawn to crazy people with cameras. Are you ready? Every year's worth of planning, can, at the touch of a few buttons, be applied to the next kid in line. Customized, even. To that very child! Yes, the ability to generate transcripts, grade reports, track progress are lovely. Even compelling. But to not have to replan Saxon math from scratch every year for every kid? Priceless. Besides that, as long as a particular program works for each kid, I figure at some point I'll reach critical mass: I'll have everything in the universe planned and will need only to add in the dates and appropriate kid's name and school year, thereby enabling me to be so efficient that I can finally take a nice, hot, scented bath again. Alone. Score!

Seriously (swerving wildly), thanks for thinking of us. Knowing that all civilization is praying for my little group just is so awesome. I truly feel the love. Thanks too, in advance, for prayers on Monday. The judge is a good guy (what horrid things he must hear), my attorney and her whole office rocks, now all we need is the best thing to happen for the kids. Fingers crossed, eyes heavenward.

I'm going to watch Q very carefully for any further "dropping off" in his personality. The neuro guy will re-evaluate this med this week, so maybe he'll end up with a reduced dose. This would be fine with me. I miss my chatty, perky boy. At naptime today, I was rushing to get the med ready (crush between two teaspoons, combine with tiny amount of food, add sugar to further mask flavor, stir with toothpick in the bowl of the teaspoon), Q fell asleep. No problem, I'll just lay him down to finish his happy nap in peace and quietly rejoice that the big hairy drug wasn't needed this time, right? To my disappointment, he startled when I laid him down in his crib. I was so hoping that he could do, say, just one dose a day or something. Who knows. Maybe he'll grow out of it?

This weekend brings campmeeting to a close here. The kids have loved, loved, loved it. We've had fantastic dinners with friends at their tent on campus, we've renewed old friendships and struck up new. We've glued foam pieces of sundry craft projects. We've sung songs about Jesus and heard whole, complete thoughts given in good sermons--because the little monkeys were busy with their foam, glue, and Bible games. I've enjoyed a filling up time and hope you're blessed to have the same sort of space in your life. Renewal is a precious blessing and too rare in a bone-weary world.

Be kind to yourself this weekend, rest well, tell your beloveds just how much they are to you.

Peace.

Q news

From a site for parents of kids with Polymicrogyria:

Polymicrogyria (PMG) is a rare brain disorder of neuronal migration resulting in structurally abnormal cerebral hemispheres.

Yeah. I don't know what to say either. It's not news, but sometimes it rolls over a person like it is.

Several days ago, Q began having a series of exaggerated startles as he was trying to fall asleep. These were occurring seconds apart, as he was drifting off, waking him to the point that, after several, he would just give up trying to sleep. As I was telling his SpEd teacher about this today, I realized that it's actually been going on for weeks, but as it seemed to be happening only when he was in his car seat, I didn't think too much of it. I mean, we're always having some new funky variable, why not startling in the car seat when he's tired? These seriously cut into his sleep time. When he sleeps less, it becomes more difficult for him to sleep, his tone drops, he gets sad and cranky. It's a wretched loop.

After a call to the neuro guy, Q is now taking a teeny dose of clonazepam (Klonipin). I feel horrid, like I'm drugging my baby. Not that such a thing changes the legitimate need for the meds. (Bang, bang, bang goes the head on the keyboard.) After having now 5 doses, he seems to be less sleepy but his tone is waaaaay down at least part of the time, making it hard to work on things like developing good trunk muscles for sitting. (Bang.)

I'm sure he'll adjust, all is well or will be and on we march.

I just don't much like that my 17 month old son whose father left when I was almost four months pregnant has to take freaking benzodiazepines. (Bang.)

Not that any of that is material.

Sigh.

How about some gratitude? It's raining, so we won't have to water the giant garden. What else can I list for good stuff? The kids have been having a blast at campmeeting this week--I actually got to listen to a great sermon last night on forgiveness. The best part of the new meds is that we haven't had another 38 plus hours wherein Q only sleeps for only 6.5 of 'em. That's super. Also, a roof over our heads, having just enough money to afford both medicine and new unders for the growing brood. Having good, really good food and friends and family to share it with. Q seems to be really trying to talk--making different noises at appropriate times. Yelling "Ba!" when S was talking about wanting a bath. Baths are his Nirvana. If he could breathe water he would, just to show how much he completely loves it. So. Also, S keeps all of us here in stitches. Her dad and I used to always be smiling at each other over the tops of the kid's heads--more recently it was K and S. They're smart and cute and awesome kids, very verbal and fun-ny.

I must be tired, because I'm having a hard time being cheery, though there's plenty to be cheery about. So I'll head off to bed and come back when I have something nice to say. Heh. This is perfect because I told the kids tonight on the way home that unless they could be nice, they could close their lips and be quiet. For apparent lack of material, they were stone silent. Yeah.

'nite.

Wheee!

So I went to the state homeschool thing and I'm going back with the kids after a bit. Q's asleep and will stay here with grandma--as soon as she gets home from work.

I ordered a raspberry mocha (nice and warm on a rainy morning) and forgot to specify decaf. So I drank the last swig and thought, "Why am I sort of buzzing around on the ceiling? Oh no." I'm still a little wired. I never drink actual full-octane coffee, so the buzzing in my head right now is a smidge uncomfortable. I'd be pretty high on the thrill of the new books all by themselves, so yeah, the combination of the homeschooler's catnip (new curricula) and that sneaky caffeine have me typing really, really fast. Sadly, it makes my fingers stutter, too.

I just love books. The shape, the smell, the satiny smooth crispness of new pages. The heft of paper or hardback, the way they stack, and then of course there's content. Just to keep it interesting. Heh. I got some timeline posters, the latest edition of Homeschool Tracker (not books, but bear with me), Strunk and White's nifty little book, Saxon 2 and 7/6 (we're still recovering from the debacle of brief enrollment at a small Christian school which just wasn't equipped to handle what we needed), some writing papers, a couple of birthday presents (journals--shhh), and SOTW 3 CDs. I'm going to take my kids back to meet Jim Weiss--it'll be a celebrity sighting for this group. There were some fun looking art booths there too, so I'm hoping we have time to walk around all of them. I may go back to look at the maps again, too. They have a convention price on, so it's two for the price of one and a half. Very nice. And no shipping.

Ack. I've gotta go drink a gallon of water or something. The buzzing is getting too loud.

Happy new school year! I love this. (So we don't officially start 'til August. Whatever.)

Bzzzzzzz. . .

Q news

The visit with otolaryngology was good. The resident and attending were both funny. The attending kept calling Q "her" and then smirked, laughed and made jokes at himself (with the resident's help--rare, that) for not noticing the blue blankie which reads "Little guy on the go" and the boy clothes, etc. The attending also joked, when noting that Q's ear canals are nicely formed, that he's going to invent a disease that causes large ear canals. All he'd seen that morning were tiny ones. Heh. I told him that S has the tiny ear canal thing covered for our group so Q doesn't have to take that on, anyway.

I've also just recently heard from Q's geneticist regarding her contact with Dr. William Dobyns at the University of Chicago about Q. Upon review of Q's MRI, Dr. Dobyns says that it's definitely PMG goin' on in there. The least affected area of the brain is the anterior to mid-frontal lobe. (This explains the boy's excellent sense of humor, I think.) Q is apparently short on white matter. There's more, but I don't know what it means and I'm not sure it would matter if I did, at least not without interpretation from the expert. Dr. Dobyns is the man when it comes to polymicrogyria. I was encouraged to note, when I began searching terms online from the mini-report, that Q's geneticist oftens publishes and presents in conjunction with Dr. Dobyns. I find this comforting. Polymicrogyria is a teeny little almost not even there section of known brain anomalies. Dr. Dobyns and a couple of other guys in the world are qualified to address this with adequate context and provide any further info as far as life expectancy, etc.--one in Australia, one in Italy (I believe this doc specializes in seizure activity in PMG patients), maybe somebody near San Francisco?

I am thrilled to have a little more definitive diagnosis, but must admit to some anxiety as to what this means for Q. While I haven't given up on him walking, as all the parts begin to come together, I am realizing that if just getting to be able to sit up is such a process and a struggle, other things we all hope for may never show up. And? It'll be okay either way. I've wrestled with the whole G-tube thing the same way: horrified at the very idea of Q needing anything so dramatic, more horrified at the implications of him needing it and not getting it. Fortunately, the ear infection is on the outs and he is eating a little better.

I've been feeding him Yo-baby thickened with DHA-added baby oatmeal or stage 2 fruits or veggies with a little cream or half and half or coconut milk, then thickened again with baby cereal. Anything to get those calories up. When I had him in on Saturday for the ear infection, he weighed 24 lbs., 4 oz. I'm praying that the gains haven't been lost in this last illness. Goodness knows, that pound between 23 and 24 has been touch and go since February, seriously freaking me out at times. I mean, the reflux is bad enough that the ENT thought that he may be having a little washing up into his sinuses, so he's now on Rhinocort, for any possible inflammation he might have there that's causing the odd "snortiness" at night. So the reflux is also bad enough that Q often spits up and gags a little if laid on his tummy or slumps while sitting up. His tum empties slowly enough that a third meal at midday is currently out of the question--it'll just come back up.

Just before he got sick, he had really been loving the texture in "riced" macaroni and cheese (organic) mixed with stage 3 green beans and rice. He even appeared to be actually chewing, as opposed to the immature "munching" reflexive motions seen at the feeding clinic visit. So I've been quite hopeful about avoiding a G-tube altogether. Then all this gagging and spluttering with the crud in his throat and I've felt like any hope of him making progress with feeding is gone. Tonight, though, he was handling meds better, sucking down apple juice as quickly as I could safely dribble it into his mouth with the syringe. Maybe tomorrow he'll be excited about the nosey cup again?

Either way, at least he's feeling a little better. Bonus: in addition to his reacting to Amoxicillin, he turns out to be allergic to Omnicef (only 3% of kids are, but then, we don't do anything easy, do we?). Same rash, but the Amoxicillin event was sort of like a sideways tear-drop, about 2 1/2 " long, sort of adjacent to his belly button. The rash today was the front of his whole torso, up his neck to his chin. He was better after Benadryl, but it takes a while for any drug to leave one's system, so we'll see how he is in the morning. He's been switched to Zithromax. Fingers crossed, eyes heavenward.

His therapies are going well. He has glasses, which make us all think of him as "Q Potter". Heh. He sees so much better with them--his tone and coordination in his arms goes up when he has them on. His favorite thing to do is get his fists up , knock the glasses off the bridge of his nose, and chew the nose-pads. The little stinker. We now have a tiny little patch to affix to one lens to make that other eye work harder at crossing the mid-line toward his nose. He'll have boots soon to prevent his feet from dropping any more than they already do, the neoprene mitts are on the way, his weight bearing mitts are here, but need some tweaking. It would be helpful if I could remember to take them in to the appointment, huh? He's very "verbal"--vocalizing in appropriate tones to coincide with questions asked, at appropriate intervals to request more of an activity or to let us know when he's just done, already. And he smiles most of the time, gurgles and coos like a champ--a terribly engaging little man.

So that's the news from here about Mr. Q.

How're you?

Hi!

I'm still here!

I'm swamped, I guess. It's that time of year--wrap up, re-evaluate, take The Well-Trained Mind to bed and read for inspiration. I love it.

Also? The last twenty-four hours have felt like a solid week: three raccoons tried for the chickens but settled for two trash cans instead. My recent internet searches have included an*l itching and pediatric pain management: Q is having an ear infection and a fever that won't quit (which means grumpiness, seizures, gagging, low tone, less eating/pooping), S is having a yeast infection (leftover from her ear infection antibiotic) and -- drumroll please -- impetigo. Poor girl.

It's just a laugh a minute around here. Between those things ^ and restless olders who won't sleep--grrr--I got to bed at 3 am. We had a big day at a horse show with the kids. I'll come back and share pictures. After I wake up. Maybe next week, then?

Heh.

Hey

So. Long time no write, eh? I keep thinking that I'm going to sit down and share, but then, you know, life creeps in.

First things first: The Piano Girl is working her fingers to the bone to get to music camp this summer. Check out her site and progress. What an awesome thing to have such a network of people pulling for her--you could be one of them.

I started this post before dark and it's now 12:58 am. Q just went down so I'm going to go fall into bed too. Sorry to keep you in suspense (heh), but you'll have to come back later for the rest of the story.

Rest well.