So I've been working and reworking the budget in order to be reasonable and attentive and, you know, grown-up. I've been laboring for some weeks under the idea that I was being extravagant with the amount I was allowing for groceries. Not so! According to this table, I'm low. Even lower than the "thrifty" budget, and by enough to make me feel quite thrifty, indeed.
Hooray for me, she says, tongue planted in cheek.
Equal parts of low-fat or non-fat Greek yogurt whipped with cream and a little bit of vanilla sugar makes the nicest accompaniment for nectarines and peaches. It has a little zip, like creme fraiche, but a ton more protein and less fat and everyone loved it, right down to Q. Tomorrow we'll be trying it with blackberries and nectarines. Slurp. It will be especially tasty because we will be sharing with friends and eating it all outside before and after some hikes.
Last week Q rode in his pack and just loved it. This week we're going to try it again, for a little while, then try the chair again on the same paths where he laughed the whole mountainside (and all its grinning hikers) silly a couple of years ago. And we'll be having a vat of homemade potato salad (inspired by the kids' exclamations of delight at their daddy's version and the fact that I haven't made potato salad in at least a couple of years now - hope they like it!), and another of this lovely combination of quinoa, black beans, corn, baby sweet peppers, cilantro, lime, sweet onion, and a splash of EVOO with salt and pepper. Yum. Avocado for those who want it. Then sandwich stuff and fat, juicy tomatoes and cottage cheese, too (summer food). And lots and lots of water to drink.
I folded four loads of laundry after the kids went to bed, maybe more like five and a half. I've got one more load to start and then I'm for bed. I know mamas always say that the laundry is never done (and they're right, unless the kids are nekkid and suspended in stasis), but here, with Master Q keeping us busy, busy! It needs to keep on moving, or else it would become a hazard. (shudder) So down the stairs I go.
Hope you're looking forward to a sweet and restorative weekend with your favorite people. Or person. ;o) And some very tasty food. XO.
The Five Languages of Apology, Chapman and Thomas (hard read, when one is looking at oneself)
Praying with the Psalms, Peterson (love Eugene Peterson)
The Myth of Laziness, Levine (haven't started it yet, but loved his "A Mind at a Time")
The Canon: A Whirligig Tour of the Beautiful Basics of Science, Angier (completely loved her book on women - anatomy and etc., but occasionally find her tone to be smug here)
Getting to Calm: Cool-headed Strategies for Parenting Teens and Tweens, Kastner and Wyatt (very good, this one may remain on the nightstand for the next fifteen years...)
The Art of the Public Grovel: Sexual Sin and Public Confession in America, Bauer (I'm nowhere near starting this one since we're landing in the next round of studies here, but what a fascinating title, no? I've so enjoyed her other works, I can't wait to sink into this one - maybe on that cruise I'm planning for two thousand and never...)
I also have The History of the Medieval World (Bauer) to read and I'm feeling terribly guilty about it. I had received the advance e-version from the author with a promise (mine) to write about it when it released. I did not (hangs head). I hadn't finished it and felt, well, as if my gushing wouldn't necessarily add strength to her accolades. Since I hadn't finished it. Silly, I know, but there it is. So I'll go ahead and gush now.
My kids adore history and it's not just because I constantly talk about how cool it is. It's not just because we read biographies and encyclopedias, or Genevieve Foster books. It is in no small part due to the fact that we began reading The Story of the World series almost eight years ago. (Can that even be right? Someone tell me if I'm wrong.) We've been through them all a few times now, and the kids can quote portions of the audiobooks. They color maps with confidence (from the student pages), and have enjoyed staging a war while painted blue, as Celts, among other fun activities. We had high hopes when beginning The History of the Ancient World and weren't disappointed. G made a point of reading short passages to anyone he could get to sit still and he laughed and learned and enjoyed it immensely. The timelines, maps, photos, footnotes, and well-told anecdotes have so engaged him. The second book in her series, The History of the Medieval World, has similarly been a delight. He's not quite into it yet, but I'm enjoying it thoroughly and he will too. After all, history is cool.
Go buy the book - or books. Could be that you personally aren't teaching children but haven't had a tour through a good history tome lately. Shoo. Find at least one of the series, maybe at your library, read it, and then come back and write comments. I can't wait to hear what you have to say.
Look at that. I missed posting the whole month of July. In fact, it's been two months. I don't know what to say about that. Sometimes I look around and realized that two weeks have gone by and I'm not sure how we've all managed to stay upright and in motion and all, and then I remember to check the laundry. And yes, there's evidence that in fact we have been buzzing around like that. Heh. E's been in charge of that department lately and doing a pretty good job of it too. More likely, at least when school is in full swing, I remember how busy we've been when I note that the grading has begun to pile up. Good times.
Onward. We've had a fun summer. Spent some time on a lovely little island with lovely friends, then hauled off to a family reunion and enjoyed swimming with cousins, and the bigger four spent time with their dad. Q made his television debut (SO cool), and concerts - including all the kids getting to see HMS Pinafore. Q loved that too - he stood at the edge of the balcony overlooking the orchestra pit and tried to help out with percussion. Then we had the best ever not-exactly-VBS week doing art, science, and food projects. That visiting kids asked if they could come again on Monday for more (there wasn't more), was the surest sign of success. I'll post the amazing pictures if I'm allowed to (copyright, privacy, etc.). We're considering writing a curriculum or outline for what we did and selling it. It was awesome. And the people were great too - it was a huge bonding experience for the church with nearly a 1:1 adult (volunteer) to kid ratio. So cool.
Following that fun week, we slept some and then headed out for some family time with auntie and uncle. That was so cool - we rode horses (ow and hooray - it's been a long time since I learned to jump little logs and fences), saw a fly-in/out of smaller planes (including one restored by boyhood friends of my dad), and spent an afternoon out on a pontoon boat and swimming in lap-pool temperature water. Chilly! So Q did not go in, but he loved the wind and sun (but no pink on him, not even tiny freckles) and the boat flag. He absolutely howled when he had to leave it on the boat - he loves to have those opportunities to be in charge. Funny guy.
So what's next?
On more general topics, I'm asking for continued prayers regarding the house situation. Not much to tell right now. I spent part of today trying to nail down details. I'll know more later in the month.
Regarding the kids, we're getting ready to start the school year with stacks of fresh workbooks and empty journals and lovely books like "A Rulebook for Arguments." It's a little bit like climbing on a rollercoaster. I have one offspring who is looking into a driver's permit (that thud you heard was me fainting), another who wishes to rearrange the planet to make it function better, one who worked her tail off this summer to earn money for something she wanted, and another who is trying desperately to follow in her sister's footsteps and earn her own fun stuff too.
Which brings us to Q. I'm not sure exactly how his school year is going to work out. If he were a slightly less complicated kid, I'd have no problem putting him on the little preschool bus and getting him back again a few hours later. But he's not that kid. He has to have good positioning in any chair configuration lest his clothing bunch up and begin to threaten the integrity of his skin. A looser set-up often results in him slumping over and throwing up because his torso sort of collapses without good support (though this is happening less and less frequently). He doesn't protect his own head like another child his age might, so I'm not sure about sticking him on a bus in his nifty Bingo chair - not enough head support, I think. Add to that this: the school district is looking to have PT and OT occur in the classroom, with the other kids, because they want him to be receiving services in the "natural setting," which for a four year old, seems to be a preschool classroom with a bunch of other kids, all of whom have their own issues. This makes me a little desperate around the edges. Q loves those other kids and would happily play with them all day, but there will probably be one less aide in the classroom (budget cuts, you know), which means that there's rarely an adult next to him. Q does not do screamy kids. Kids with developmental issues often have screamy issues. Heck, smaller kids of the more regular variety often have screamy behaviors. Q cannot get away. So if he's stuck there, can't defend himself, hasn't the adult help he needs unless there's a 1:1 therapy situation happening - then what? He comes home fried and doesn't want to go back because it's gone from fun times learning with the therapists and playing sometimes with the kids, to dreading the intensity of the not good parts. I've seen him flinch at the sound of particular voices after repeat exposure to those persons being unpleasant (yelling is a very bad thing, but screaming and whining just plain sets. him. off.), and I do not want to go there. So at the very least, there's more to learn before we know exactly what will occur for him. I'm going to push, though, for more 1:1 therapy time and less classroom therapy time. Both are certainly useful, but the former is vastly more useful to Q. And since he's my concern, and not protocol or format or classroom needs, well, we'll see how this works out.
The boy has grown completely out of the stander he's had. His hiney sticks out as he tries to fold himself down to the tray so he can get to the bowl of dried beans or whatever else is there. So that particular loaned item will go back to the therapy unit, all cleaned up and shiny. Tuesday next the lovely PT and the miraculous Guy Who Can Modify All Things will be holding a council on whether or not we're going to be ordering a SN car seat, a new Rifton walker/gait trainer (how can he have grown out of everything at once and so fast?), and when we should be thinking about getting ready to deal with planning for a new wheelchair - it will take about six months from the time we begin the paperwork. And his AFOs need replacing, a process which begins with tracing the outline of his feet, on Tuesday. He needs hand splints too, which we'll address the thirty-first with the every other week OT appointment. Which brings me to what a shortage there is of pediatric therapists, in case anyone is considering a career change. Q needs to have OT at least weekly, twice or three times a week would be of clear benefit to the boy, but two or three times a month is what's available. Argh.
Communication devices. Not much headway. The episodic SLP guy needs more footage of Q using the device he wants to order before he can write it up to justify for coverage, a process which takes about three months. I'm seriously considering the iPad, mostly because it's a fourth of the cost of the specialty equipment, but also because it just seems that much more flexible and effective for Q. Give him a splint to support the extension of his index fingers, and we're off and running. Just like that. But it won't be covered.
We are increasing Baclofen with two more weeks to go before Q is at the maintenance dose. I think it's working for him. He seems to be making gains in real muscle tissue as opposed to having those tiny, bird-like legs that one often sees in kids with CP or other particular muscle issues. When I work on his legs, there's definitely more mass there to stretch. I noticed about a month ago that he has actual lats, a nice change - now to access the other parts. His swallowing is better on the Baclofen too - better oral motor skill, use of lips, far less excessive tone, more appropriate swallowing and coughing, less spluttering or near-aspirating. I would so love for someone to produce an accurate dosing system that would circumvent the need to implant a pump, though we'll certainly be looking at that as the best option, given what's out there.
And it's time to get the eyes checked again. All ten of 'em. That's a whole morning's activity!
On that happy note, I do believe the boy is asleep (he napped after swimming therapy today) so I'm going to go crash too. I'll leave you with the verse from the wildly successful not-VBS week. (Can I get an Amen?)
Taste and see that the Lord is good.
Psalm 34:8
XO.
Bruce Feiler has an especially compelling story to share this day. Once there, watch his TED talk and read his piece on Daddy bashing.
Rob Rummel-Hudson's book, Schuyler's Monster, tells the story of a family walking an unexpected path. They're in the thick of it still and he has excellent thoughts on fathering.
Randy Pausch passed away nearly two years ago. He remains a giant in the category of dads. If you haven't already seen it, his "Last Lecture" at Carnegie Mellon is worth your time - scroll down once you're there.
Each of these men is a little larger than life because (in my opinion) of their ability and willingness to be articulate about things so large and heavy as to be nearly unbearable and unfathomable. Which is the secret, I think, of good dads everywhere, most of whom are carrying on quietly and couldn't care less about anything but their families: showing up is the thing. Bringing your A game even if you have to make it up with spit and baling twine. If the A game is unavailable, whatever one has is brought and the rest is sheer force of will. The desire to really be there informs their speech and thought and other relationships. And we are all infinitely better for it.
(Rob inspired me. Good moms work at being so, and I'm inferring, based on Rob's comments about parents, that good dads do too. I think there's plenty of evidence to support this notion, but as you may have noticed, I'm not a dad, so it's still an assumption on my part.)
A cheer for good daddies, then. And you should probably go hug yours.
XO.
Shall I begin another post by discussing how busy we are? How about I just post a typical schedule...
Sundays - Projects, yard work, lesson planning, groceries, etc.
Mondays - School, E's voice lesson (she's trading babysitting for voice), sometimes medical appointments. But mostly lots of school.
Tuesdays - Q has PT, Speech and OT in the morning. G has OT at the same time; when needed, ortho appointments follow therapies. The girls are usually doing workbooks, watching videos, or cleaning their room while the boys are busy. G reads copious amounts of History while waiting for Q. After lunch we head out to violin/art. Usually there's time for Latin and/or etc. after.
Wednesdays - K has just one more early morning PT session (wahoo). Piano in the morning for the older four (schoolwork for whomever isn't actually in a lesson), during which Q heads to preschool for an hour of either OT or PT, alternating weeks. Afternoon = school.
Thursdays - Q goes to preschool in the morning because there are fewer children in the classroom on Thursdays which means less germs. He has 20 minutes of Speech while at preschool. Schoolschoolschool for the rest of us.
Fridays - morning involves some organizational time for the household before Q has PT (usually in the pool, he's hilarious). Afternoon = library, school, more readying for the full day to follow.
Saturdays - Busy. We've had a play, choir, orchestra, platform duties, potluck involvement, Improv classes, and now rocket building, as well as game nights and more. This means packing along three meals for Q and usually one plus a snack or two for the rest of us as well. Changes of clothes, coloring books, stuff to read en route, and more, bagged up and ready to haul. We love our church. And we are always glad to hit the sack by bedtime. The summer will be a nice break from the crazy-busy Sabbaths - we're planning to do a little hiking (pack adjustments should let me carry Q one more season).
So that's how we spend our time during the weeks around here. We usually have about an hour, sometimes ninety minutes on violin every day, plus roughly half an hour per kid on piano (though K often puts in an hour a day), plus PEGS (chore chart) and schoolwork. We get most of the actual schoolwork done with long days on most Mondays and Thursdays, with the rest spread out between obligations on the remaining two and a half-ish days. So far, they're pretty voracious readers, so taking them into the library is a must (and sometimes feels like inviting locusts into a wheat field).
Q gets at least half an hour, often up to two, in his stander in the morning, and in his walker (with leg splints) in the afternoon, if we're at home. If we're out (museum, etc.), he can be held upright with a hand towel around his chest, under his arms, and supported well enough to be mildly ambulatory, depending on how driven he is to get to the next thing. The goal is to have plenty of time in a standing weight-bearing position to deepen his hip sockets as well as to help him to have early experiences in trying to be mobile.
Lately, (since last fall) we've been attempting to get out and walk/run a few times a week. Three times in a week is good. Five is pretty miraculous, but does occur sometimes. Six would be thrilling, for me anyway. Q seems to benefit from the head bobbing motions when the chair shimmies, though it seems uncomfortable to me when I'm watching/pushing.
The bumps on walks/runs seem to have more or less the same effect as the e-stim Q receives in PT. I've contemplated asking insurance for an e-stim unit to use at home, but I'm having trouble imagining folding one more thing into a day around here. Even a small thing. I know the muscle groups well enough to target them and put the leads on correctly and quickly and I'd feel confident about that. It would be great for him to have that concurrently to his time upright. And the research is spotty/contradictory, even though his PT feels like we're seeing some changes in Q, and I think they're lasting as long as 48 hours after treatment. Chasing my tail here, as with some other things for him.
We're about to add potty training into the mix. Perhaps as early as this coming week. The pharmacy just needs to deliver the system and we'll be busy with that. Wheee!!!
One day they will all be grown up. It seems hard to believe and yet so close. I'm hoping that we're making some good memories, working hard (we should talk sometime about the correlation between neuroplasticity and effort) and playing well. I'm hoping that with all we've invested in, they're growing in faith and stature, character and ability. Parenting is such a marathon, no?
Hope you're looking forward to a peaceful and restorative weekend. May you rest well and arise blessed. XO.
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