Rundown

It's snowing, its dark, there's a fire, and all the independent appliances are running, which seems like the perfect time to catch up.

The girls are busy as can be: E is a commuting geophysics major who secretly loves her hardest math and physics classes, even though she's there for the rocks; K made the dean's list in her first quarter in dual enrollment while working part time and playing as much music as she can; S is teaching four music students while rehearsing with two orchestras and studying, mostly for test preps. G is working and adulting, so we hear. And Q is, well, he's three months post-op from baclofen pump surgery, and trundling along. His scars look great. His para this year has him working with multiplication facts (he seems to know the answers - woo!), and he's having adventures with new school equipment (Rifton Tram), trekking like he means it, and practicing with door switches and innovative grips/handles.

This is a weird time of life, peeps. In the sixteenth year of homeschooling, I'm almost done directing educational pursuits. My role these days is more about chauffeuring, lifting, and tracking. S is ready to get her license, so I'll be down to just Q, mostly, with his five or six hours of therapies a week and rides to school (because we're not doing the bus at 6am, thanks). Well, and then hauling folks to the train station. The lifting requires training-for these days: 70lb chair will soon be 90lbs when the new setup arrives, and the boy himself is north of 82lbs. The tracking bit is mostly calendar wrangling, but also trying to stay on top of the congruence of All the Things - medical, physical, research news, anticipating emotional needs...

During Q's OT session today, I was reading Neuroscience News and frankly grooving on the report that the Salk Institute has identified 11 discrete groups of V2a neurons. This means that, beyond the two groups they had been able to see, differentiating limb movement based on location within the spinal column, by using single-cell RNA sequencing they're more able to nail down the difference in molecular profile, and thereby the difference in roles. This will eventually be enormous for stem cell therapies, especially for spinal cord injuries, but perhaps also for congenital diagnoses. The thing I'm finding compelling about this info is that Q's baclofen pump has revealed just how much he's relied on tone vs. motor planning to accomplish tasks. He's having to work over the lack of tone to manage reaching, grasping, stepping, and even some posture/positioning. Right now, his left-leaning upper thoracic scoliosis is kind of winning, a little bit. We've got work to do there, and will see a couple of ortho people March 13 to get that ball rolling (fingers crossed, eyes heavenward - at least the worst of all ortho surgeries has already been had). But the news about the V2a neurons helps the Qpuzzle to feel less... persistently opaque.

The things I know we can do for Q now include assertive nighttime positioning, countering that curve and stretching his hamstrings. Both of those are going reasonably well, with the caveat that he's pretty bugged by any phlegm at all in his throat, so not puking is prioritized over optimal skeletal/soft tissue supports. But that's just a little better than it was last week. Additionally, he needs more systemic feedback (proprioceptive and vestibular). He needs to be wiggled and jostled and bumped around. A lot. When he was smaller this was easier in that he fit nicely into a modified REI backpack which I wore while teaching the big kids, and he was easier to hoist into and out of a variety of other setups, including his WIKE. But the WIKE is tougher and tougher to get him into and out of. Between his own body formation and the low height of the WIKE seat, I can't take him out without the help of at least one burly child/sherpa, just because I can't get him into or out of it. I hear that there are nifty racing chairs out there, but I haven't gone down that particular rabbit hole.

There's more, of course. I think I'll have to come back to talk about the other equipment issues and how to keep Q out there, defying gravity. As it were.

Meanwhile, here's to a good, long sleep, and hugs to give. Mwah.
xo

All along the watchtower

I'm writing from the couch, with a fire in the fireplace on a grey day. Q is communing with the curious old lady cat, who came to visit and see what his tube feeding and meds were all about this morning. She remains on his lap where she intermittently flicks his nose with her tail, much to his delight, while he maintains a purposefully gentle grasp on her leg. E and S are still asleep, even though I have Rattle and Hum playing not softly. K is ironing, bless her sweet heart. The cloth napkins and tablecloth needed help, I guess.

A lot of water has flowed under the bridge since Q's procedures... Mostly, we're grateful to be done with the vomiting, or mostly done, anyway. I think this puts him at about five months to recover from the extra nudge on the gag reflex from being intubated. Initially, this adversely affected his weight gain, because, as you might imagine, losing an entire meal once or twice a day is problematic. But as of this week, he's up not quite ten pounds since the tube placement (lost a couple of pounds at first, so he gained all this since mid-October). We're all feeling it, like crazy, and I'm scrambling for modifications and reorganizing the house to help alleviate the increasing physical strain of this suddenly strapping young man.

All the other areas of recovery were pretty good, though. He needed more eye ointment than we'd initially anticipated, but again, healed quickly and thoroughly. Which reminds me, I need to get him back in for the final follow-up ophthalmology appointment. It's also time for another dental visit. Since Q doesn't chew much food, he doesn't have the necessary stimulation to get the roots wiggling on loose teeth. So he has a single shark tooth situation going on right now. It's kind of adorable, but probably not all that comfortable.

The girls are toddling along. E survived her first quarter on the University campus, and as sort of a junior, too. She's playing viola with the symphony, and is ecstatic to be with a group of mostly music majors and minors. K and S got to attend the concert this last week, and were duly impressed with the sheer musicality of the talent. Heh. K is getting ready to stretch her own educational wings via the local community college, wrapping up her homeschooling adventure, while S has just begun the high school portion of her last years at home. They're tracking well as individuals, growing the skills they'll need to wrangle their upcoming forays into adulthood. Not that its a seamless thing, mind you. Growing humans isn't a smooth process at any stage. But it's pretty neat to watch their innate abilities, character, and thought processes take on a certain polish as they reach for their goals, educational and otherwise. That they enjoy things like They Might be Giants is a nice bonus.

These days, I'm spending most of my time running people to therapies, work, or orchestra. In a close second is the management of paperwork, especially as it pertains to disability issues and medical appointments. Those are followed by the re-configuring of the house, as I mentioned. It's a little weird to note how much home life changes with the ages and needs of the occupants. Suppertime is later for the girls because of rehearsals, classes, and that one work schedule. Occasionally, I'm at home without anyone else here for a half hour or so at a time and I hardly know what to do with myself. Sometimes Grandma does some of the running around, bless her, and then I have longer stretches to catch up laundry, etc.

What else? The garden is its wintry self: crunchy some mornings, gray and brown, with tiny sprouts of green, here and there. The magnolia stellata is putting on fuzzy buds, getting ready for March blossoms. The wee evergreens we found for a dollar or two last fall and chucked quickly into the dirt are in various states of disarray. They look like they've been working hard to survive the couple of weeks we had of subfreezing temps. K and S and I went out and stole (shh!) leaves from right of way areas and used them as garden mulch. Despite some hefty winds, they're still there, trying to help us with our attempts at small-scale hugelkultur.

We didn't have any major evidence of wasps last summer, thank goodness. K was helpful with setting up the traps, since I'm not supposed to involve myself with that anymore. Here's to the coldness having put down a few of the possible queens for the coming summer. The baby upright apple trees also made it into their new garden spots, and seem to have survived. I'm hoping for more fruits than the two surprise babies we had from the one tree. The raspberries probably need transplanting this year...

In the bulb world, we're looking forward to new fritillaria this year - K's pick from the bulb sale last fall. The front tulips waited to stick out their noses until after the New Year this year, as opposed to early December last season. And despite our very best efforts, there are still tulips coming up under the ramp. No idea what to do about that, since we keep transplanting them, and there just keep being more... Silly overachievers.

K, in true farming genes fashion, began planning the spring plantings in November. S asked, amid a snow flurry a couple of weeks ago how long it would be before we could start working in the yard again. There's nothing quite as lovely as being outside, hands in the dirt, bringing certain things to heel and setting others free... Which reminds me: the Greek oregano needs minding.

My friend, Sarah, has been posting quotes from Thomas Aquinas today, which are inspiring me to do some real and deep reading. I think I'll do some, right after I give Q lunch.

If you could, my brother (and his wife) could use bolstering prayers as he barrels through chemo, while enjoying the outdoors as much as possible. I hope you all are well and profoundly blessed, wherever you are and however your garden grows.

Love one another...
John 13:34,35

Q news

I'm writing from the surgery waiting area at our Children's Hospital. Q is asleep now and various co-ordinated specialists are working away. This is something I try not to think too deeply about, since I'm acutely aware of the details anyway. He should be awake in an hour or so, and we'll get busy with Life with a G-tube.

The decision to go ahead with this was validated especially this summer as we've been enjoying time with family. Many days, especially highly active days, don't offer themselves up as easy ones in which to manage pureed foods at the perfect temperatures, eaten at his pace, out of the wind, etc. Another plus will be dosing certain meds without Q having to taste them. One in particular tastes like nuclear waste, and it's not going away any time soon.

Q's medial eye muscles are also being adjusted to counteract some of the exotropia/strabismus he's had since he was tiny. I'm hoping that all of these "small" adjustments will be bearable for him and truly improve his daily life, allowing for less energy to go into gathering adequate calories and more energy to go into cognitive and physical goals.

Speaking of goals, Q continues to work with his magnificent speech device, and is making small but significant and steady headway. Since so much of his interaction at every level depends on his having a fast enough and precise enough motor plan to pull off the desired result, we work on the small targets, with a calm body, rather than allowing larger, jerky or "bashing" movements. It's paying off in many important ways, but perhaps the most important one is that he has an expectation of being heard and involved in his own activity. The coolest thing ever (I think) is that this expectation has resulted in his replying when other people are trying to engage him in conversation. He has begun to vocalize a "hi" quite predictably upon seeing his favorite people, and to have an almost as enthusiastic smile or sound for other folks who speak directly to him as though they're expecting a response. This has also happened in conversation, when someone has asked him a question or series of questions, and it's almost easy to miss. Because who doesn't expect a young man to respond when spoken to? or to comment upon something he finds particularly awesome or regrettable? It's a lot of fun to hear this play out in person, especially when the whole scene sort of materializes in front of you, suddenly.

At the end of last school year Q's suspension gait trainer helped him to walk about 300 feet, chasing a soccer ball. So we borrowed the nifty contraption for the summer, hoping to get outside with him a lot, but we really haven't.  Between weather and scheduling, the opportunities have been fewer than I expected.

They're wrapping things up now, so I should too. (How does that happen, anyway? I barely had time to get the rest of the stuff out of the van and eat a salad.) More news later.

November begins

Fall is finally here, with a light freeze last night. The purple peppers, yellow summer squash, figs, and wee acorn and butternut squashes came in. It was chilly enough to wilt the tomato bushes into mush, but not cold enough to completely discourage the honey bees or the yellowjackets. There's one spot that harbors an in-ground nest that's been problematic for a few months now. I'd hoped that today we'd finally gotten to weather that would allow some digging up and drubbing of that particular location, but alas. K and I went out to trim the seed heads off the bronze fennel (injuries have us tag teaming pretty much everything these days) and made it halfway through before the first honey bee appeared, and had just finished when the yellowjacket landed on me. Since my last run-in with this bunch of wasps resulted in steroids and an epi-pen, we were done for the day. Never have I wished so for a good, hard freeze.

The yard. Well... Our late summer and early fall were sort of devoured by injuries, allergies, and appointments. Since school started, we've been lost amid the piles of books, calendar management, and practices of various types. So the back needs those trellises and supports stuck into their quikcrete, the ramp needs someone to crawl under it (haha), and the weedy bits need black plastic stretched over them. Winterizing is going to be hit and miss, I'm afraid. Although, if the current weather pattern keeps up, we'll be weeding well into December. Last winter, the tulips started coming up Christmas week. Perhaps we'll have a similar experience this year? Meanwhile, I'm going to try to be more patient about not being able to dig, pull, or lift - so many things to transplant to more favorable spots!

Q is well, if a bit confounding lately. We've had some slight changes to meds in an effort to eliminate the myoclonic jerks he's been experiencing. So far, no change. He's more or less unperturbed by these events, though, so we're all just monitoring for the time being.

Equipment needs are in flux again, since he gained eight pounds in ten months and outgrew everything. New wheelchair seating, foot and hand splints, and sit to stand stander are all in the works. I'm wondering about trying to figure out an adjustable bed, too, since we're all having a tougher time minding good body mechanics with dressing and other personal care needs. I need to think a little more on some of the details and pursue a variety of helpful supports, some of which I'm only vaguely aware at this point.

And now we sleep. Appointments tomorrow. 

Race Report

It seems we've become a family of runners. We've slowly increased our mileage over the last few years, as the bigger kids have been increasingly able to take on more and have been increasingly interested in doing so. The race fees haven't been easy to come by (the kids work and save up), the shoes and other gear have required rather a lot of planning (and sales at Amazon on past year's models), and the learning curve for running with offspring... Well, it's a curve, for all of us, but definitely worth it.

Almost three years ago, we tentatively stuck our toes into a 10K, because by then running a 5K in intervals was a regular thing, just for burning off steam and PE.  We'd had to take a break from running with Q because we, uh, broke his "all-terrain" chair (oops) with things like 9-10 miles per week and that attempt at the long jump, which the big brother will have to tell you more about one day. (Q couldn't have been happier about that adventure, by the way.) Amazing and kind friends sent us a WIKE Special Needs jogger stroller/bike trailer, which has been completely life-altering for many reasons. Probably the most important being that Q likes to go as fast as possible, which is much easier when we can have him on wheels, because he's still growing.

With that lovely piece of equipment, we struck out into new territory: local paths for biking, increasing gradually to 22 miles down a trail from a mountain pass, and regular rides of similar lengths. Last spring we tried out running 12Ks, and repeated them this year - one with small hills and one with two looong uphills. This year those two races were a bit harder than last because the boy grew, gaining about 8 pounds over that time period. I'd also needed some PT after wrenching my back getting him dressed, which was annoyingly debilitating (why don't we just have replacement parts, anyway?), and which meant more careful training this year than last.

We'd discussed our next plans a few times, including a local run that's a bit like Ragnar (but shorter), and the possibility of finding a 15K or similar. In January, we started running longer distances nearly every Sunday morning, supported by Grandma. Thanks to a very mild winter, we hadn't really had much downtime (no hail in our ears this year - much to Q's chagrin), so it was comparatively easy to add a half mile or a mile every couple of weeks, while maintaining a couple of shorter runs during the week (2-5mi, sometimes with stairs, sometimes with Tabata sprints, sometimes with general bodyweight circuits). In May, we shifted to longer runs on Sundays, then 3mi on Tue, 4mi on Wed, 3mi on Thu, with rest and "crosstraining" (yardwork for the win!) on the other days. By June, the Wed runs were 5mi, and the miscellaneous cross-training was back in for two days a week - some of which looked a lot like PT exercises, including stretching and foam-rolling.

In the middle of this, I opted to not run with Q when our distances were above roughly 10mi with an outdoor temp above 85 by the end of the run. Trying to keep him cool enough and hydrated can add an extra 30-60min to an already long time in the heat for the rest of us, plus we started experiencing some wear and tear issues with the Wike. This has not floated his boat, even though it has meant he instead spends time finding bullfrogs, beavers, and blackberries with Grandma and Grandpa.

The last weeks have been busy and scattered - kids with different obligations, our summer program at church, etc., preventing longer Sunday runs. After having hit the 12.15mi mark, not having those longer runs felt a little weird. We ran 8mi last Sunday, then 3 and 2 for the rest of the week, with some light circuit work. At 8 this morning, my mom dropped the girls and I off at a local middle school and we joined 171 other runners for a half marathon in the rain, over a course of various terrains.

Highlights: the racing couple arguing hilariously about when the whining should commence (now - less than a hundred feet past the start line), the mile plus of mucky trail with tree roots and a couple of waterfalls, running through the ravine where the bridge had collapsed closing that piece of trail except for race day. Also: running most of the race with my (gulp) adult daughter and kibitzing as we went, S coming in third in her age group at 2:22 (8min ahead of her goal), 55 degrees F start temp after weeks of unseasonable highs in the 90's. It was fun to follow the orange arrows off the side of a gorgeous arched bridge, into the valley by the river, through a couple of fields, up a newly chip-sealed road that squeaked under our wet shoes, and onto the shoulder of a highway where the trucks full of four-wheelers waved and gave us nearly a lane to ourselves, before we met the paved trailhead.

The race support was fantastic: water at four stations along the route, with GU and Gatorade at an additional three. The volunteers were terribly supportive and encouraging (and maybe glad that the alert County Search Rescue team were kept bored?), and the folks at the finish line positively exuberant. They had plenty of bananas, Rice Krispies treats, whole oranges, and Propel water bottles - all of which were gratefully received. Thanks to the grandparents, we have nifty photos of Q ringing the bell at the finish gate, and of our muddy feet. We are tired, but happy, and (having soaked feet in Epsom salts) might even want to do all this again... As much fun as the irregularities were, I hope the trail and bridge can be completed soon - then Q could join us on this route.

I slowed down as we were within the last couple of miles. I'd run all but maybe a mile of the course - walking parts of the slippery single-track trail and stopping briefly for GU, drinks, and portapotty. God bless the volunteers with the hand sanitizer. This meant more consecutive miles and less use of intervals than ever before, and my knees and hip were making themselves known. K had slowed too, having similar issues, so we stretched a little and she took off again, finishing a couple of minutes ahead of me. I think if I hadn't stopped, I'd have come in under three hours. My time was 3:04, which I'm more than happy with.

We're home and cleaned up (I have never loved a hot shower in quite this way), the muddy shoes are drying by the door so they can be tidied, the two very old CamelBaks are empty and ready for next time, and with everyone fed we're much less wobbly than a few hours ago. Q has even decided to make eye contact again - possibly forgiving us for not taking him along this time. The medals are shiny, the technical shirts really nice, and best of all - the proceeds have gone to trail maintenance and construction.

The air out there smelled so good today. Of wet earth, clean evergreens and ferns, fresh wild edibles, damp rocks, and a complete absence of wildfire smoke. Luscious. A blessed way to spend a rainy Saturday.

You should come next time.










P.S.   WE TOTALLY RAN A HALF MARATHON!!!   RAN!!!    A LOT OF MILES!!!!!!!!  
I wonder if there's a really inexpensive one nearby before Christmas..........

Beatus diem matris

Sometimes when this part of the week arrives, I feel like I've skidded into home, knees and uniform a mess, and dirt up my nose.  Another six hours in this day wouldn't have gone amiss.  I wouldn't be caught up, but things would have moved further along, which can feel just as nice as being all caught up.

Three and a half servings of Q food are cooling on the stove, awaiting coverings and the fridge.  His towels are running - extra pre-treat, bleach, etc.  The kids are all in bed, the dishwasher just stopped, the house is getting quiet.  Apart from the big fan (it was 83* here today), it's still enough that one might hear the plants growing. 

Speaking of plants, a favorite subject...  This week, a neighbor brought over a Shasta daisy to share.  It's waiting to go into the dirt, behind the Rainbow Ascot euphorbia, with it's chartreuse bracts and their little red middles, and behind the Lucifer crocosmias.  I dug the grass out of the crocosmias yesterday, much to E's delight.  She'd gone looking for them and thought them dead, their leaves blending too well with the misbegotten weed blades.  The nearby coreopsis and Strawberries and Cream yarrow are looking fluffy.  I hope the lilac is okay - no blooms this year, though the new growth looks healthy.  I think all the moving around and heat last fall gave the poor thing palpatations.

The callas are poking their noses out, and the baby hollyhocks are holding their own.  The irises (sent by a friend, all the way from her garden on the other side of the country) are budding, and promise a swoony blue, so far.  There are more buds coming up, and each one will be a new revelation.  I had a little Miracle-Gro potting soil left from a couple of summers ago, so that went onto the Pacific Giant delphiniums today.  They need fertilizing, but we haven't any, so this shall have to do.  They're making spires already, and will try for a full six feet in height by the end of the summer.  I can't wait to see them in full bloom, their little center "bees" all fuzzy gray, offsetting the deep blue violets as if they were velvet and watered silk.

In other news, we're emerging from the spring spate of Busier Than We'd Thought Possible.  In under a week, the girls had their big orchestra performances (Mendelssohn's 5th Symphony and Rutter's Requiem), and all their spring recitals.  E played viola for the first time in public, as part of her sisters' violin recital performances - quartets.  She also played a piano duet with each of her sisters, in addition to her own solo piano performance.  K also had a solo piano piece.  We've discovered the best way to beat K's pre-performance nerves: running a race the morning of the recital.  By the time she played the three violin pieces (two as second violin in quartet, one as her piece), she was loose and happy.  S played second and third violin in the quartets (in addition to her own recital piece), and couldn't have loved it more.  Still, we're all glad that particular week is done.

The punkins are all asleep, so I'm headed up myself.  Happy Mother's Day, all you lovely mamas.  Take good care of yourselves - you make the world go round.

XO.

Good

Number one.

Number two:  These kids of mine are doing well.  I don't mean they're perfect or geniuses, or really anything related to those categories.  I mean they are becoming kind, hardworking, striving, hilarious, silly, earnest, lovely, grown-up human beings.  It's such a tough thing to describe without sounding like somebody's crazy mother, but I think this is the part, the observational bits of parenthood, where one feels one's heart swelling.

Number three:  Somehow, and the how part helps to make this extra amazing, things continue apace here - warm and dry, fed and studying.    It doesn't make logical sense that we're all motating happily forward, but we are.  It's maybe a little like adding two and two and coming up with five.  If you have a minute, stop by and I'll try to explain further.  For your trouble, we'll give you a tour of the budding backyard.

Q's better - much less gagging and no breathing treatments for two days now.  (Though I'm now holding my breath for a continued recovery...)  His personal care hours are up a tiny bit, there are prospects for some agency help, and the latest argument with insurance over prescriptions seems to be shaking out.  We shall see.  The girls had their violin recital Sunday afternoon and all did well, despite some last minute scrambling to reorganize after Q's illness.  They've had extra orchestra performance opportunities lately, so tomorrow will bring a redoubling of focus on schoolwork.

One more good thing:  I am grateful to be here.  The list of insurmountables just seems to grow - lately as though it's being fed a steady diet of Miracle Gro, Industrial Strength.   I can honestly say that I have no idea how we're going to manage the next bit of really anything.  And still.  Still!  There's so much to learn, to see, to do, to experience.  Every day presents a litany of striking opportunities for engaging with the goofy people in this house, with the amazing therapists and teachers and friend/family/pastoral types we love and interact with.  Each of those interactions spawns its own unexpected graces, opportunities, and kindnesses.  And from there?  Just wow.  I mean, there's no predicting where this stuff goes, and it leaves me daily just crazy-grateful to be here, right here, with no conditions or caveats.  I mean, I have caveats!  Serious things which need fixing!  (Come over.  Bring tools.  Yes, you.)  And still - wow, people.  Just... so, so much "wow" for which to be grateful.

Hope you're having at least a little of the same, right where you are. 

God.
bless.
you.

Goodbye, February

And none too soon! 

Oh, hello.  It's been a few months, I guess.  Crazy times here - trying to hold All the Things together in reasonable form and to a reasonable standard of function.  Sometimes these efforts are more fruitful, sometimes less.

Q's been sick.  After a day of vomiting (post nasal, etc.) and several days of being reluctant to swallow anything that wasn't precisely as viscous as water, we went to ER for IV fluids and breathing treatments.  Poor guy was just becoming more lethargic, even with tea and honey, even with the coaxing of sisters who got him to swallow the formula supplement.  The loss of sleep over the last week or so has been a bit staggering, perhaps literally.  One should not have to choose between being able to stand up and being able to think through dosing and feeding schedules.  He's better, but still with the gaggy mucus crud that requires saline and suction and albuterol unless we're okay with more vomiting.  This makes me wonder if the bug wasn't RSV.  Ew.

To complicate matters, we're down in Medicaid Personal Care hours, which seems ludicrous, but hey, whatever.  At this point, the state's algorithm says that Q requires 97 additional hours of care per month beyond what a typical child his age would require.  So I'm not sure how to put this, but what. the. heck!?  That's used up on meals and meal prep alone, never mind anything else.  I asked for a re-evaluation, and we're waiting now to hear if the request for more hours has been approved.  The not cool EEG results (positive for epileptiform activity - January) may help Q to have more hours.  For this I have a response that you might expect - rather mixed emotions, and kinda frustrated out of my mind that this is what it takes, when the standard baseline number of hours used to be 200 per month.  Since this illness, we're back to needing the nebulizer, at least for the foreseeable future, so hey!  Another item to pop into the formula!  (insert indeterminate cursing)

Somehow, amidst all this (waves arms) the girls continue to trundle along, scoring well on assignments and tests, working their little tails off for their opportunities.  They're saving to buy violins, pay accompanist fees for violin recitals, and working off parts of piano and violin lessons, as well as the summer violin camp.  I'd wish for a little less work and a little more play for them, except that it seems to be serving them well.  Sometimes organic lessons in humility can be tough to come by, but not so much these days (she says, ruefully). 

I suppose most of what we're doing these days is figuring out how to make do with very, very little, plus the occasional sweet kindness of friends and even (seemingly) random strangers (entertaining angels unawares?).  I don't know how this works, except that so far, miracles of every size and shape keep popping up, just in the barest nick of time.  (Whispering.....  To be perfectly honest, it's wearing on me a bit.  Or it could be the crazy stupid pathogen and lack of sleep...)

So that's enough of that. 

I popped in here to write a quick update, and found that my playlist is loading again for the first time in I don't know how long.  The music is playing now as I type, and making me smile.  I have no idea what I was thinking for some of these songs, but the eclectic selection has me grinning.  The heart is abloom...  See the bird with a leaf in her mouth...  It's a beautiful day, don't let it get away...  What you don't have, you don't need it now...

One wildly unrelated note...  This week several teens and preteens around the country have performed really cool acts of sacrifice and service within their families.  Whether for parents, siblings, grandparents, or other miscellaneous relatives, each of these kids has put him or herself out when all other options were exhausted.  These kids have lent succor to those exhausted caregivers, good people just trying to hold the family together and keep everyone alive, pain-free, okay enough to heal...    People, we have some really fantastic young folks about us.  Notice some of them and say so, eh?  The tasks they've taken on over the last week or so are more than many reasonably well-functioning adults can manage under the best of circumstances, and these kids have been glad to help where they can, only wishing they could do more.  May they be blessed in their endeavors.  May you be blessed for knowing them.

We've got church in the morning, busy afternoon activities, and a full Sunday after that.  Here's hoping we, et tu, successfully carve out some really quiet, really calm, really, truly restorative time over the next 36-48 hours, and in the middle of it, do take kind care of someone who means the world to you - gentleness is such a revel-worthy thing.

XO.

Thankful

I am so glad for Friday night.  I feel, and have felt for a few years now, that I often screech into the weekend, shrieking, "SAFE!" as I cross home plate. 

This week was busy, more busy than most, but certainly not the toughest we've ever danced our way through.  I am glad for the marching on of time, the markers of growing up and out for the kids, the busy things that add up to a life, or life here, anyway.  The work the girls put in every day adds up, moving them through music books, grade levels, proficiencies.  It's a grace, watching all this unfold, and it's pretty surreal, too.  Like a time warp, or being stuck in slo-mo.

So we skidded in, again.  Q had two EEGs this week, one awake and one sleep-deprived, then asleep.  He thought the strobes were hilarious, and we read stories about rockets, thrust, and gravitational pull on his iPad during the first test.  I held his hands still until he finally passed out during the second, the hilarious little stinker.  There's nothing like having to purposely sleep-deprive a growing, low-tone kid to re-order one's priorities.  Heh.

So now we wait for that news.  The seizure med titrations were miserable, but are finally done.  No more throwing up for awhile, thanks.  Q's new wheelchair was approved and should be here in a couple of weeks.  He has casting coming up for new hand splints, foot splints to be approved, and other equipment to be managed.  We've had small and large miracles pop up over the last several weeks, else we wouldn't still be afloat.  It's hard to adequately express how very grateful I am to each person who has participated in these grace notes.  I'm just... still a little bit in shock. 

If you're one of those people, thank you.  I can't do it justice, but thank you.

Here's hoping you're having some real rest, or soon will.  Blessings to you.

Projects, optimism, spring

I'm avoiding tasks.  Namely, sorting my gigantic stack of teacher's manuals and Q's toys and equipment.  It's that time of year - wrapping up the old, enacting plans for the new, filling boxes for Goodwill and garage sale. 

The girls did fabulously well with their spring piano recital.  They have two of the last three orchestra performances remaining, and they're pulling together the end of school year projects and testing.  Today they presented their history projects, complete with references to They Might Be Giants (medieval history requires mention of Constantinople, ergo...).  I'm so proud!  There's not much left to do before summer arrives in full force. 

The girls have been busking at a local farmer's market to earn money toward camp.  Last Sunday, they arrived to welcoming cheers and warm applause from nearby vendors who recognized them from the previous week.  They've got two more Sundays before they head off to spend time with their dad.  Once they return, I imagine we'll head out to use the same opportunity to fundraise toward new instruments, since they're all in need of a serious upgrade, and the piano's sticky pedal needs repairing.  The poor thing often sees four hours of enthusiastic use per day - it's beginning to show.

Aaand, speaking of fundraising, I'm working on a PayPal button for the blog because of Q stuff.  Surgery always brings extra expenses, and we're still catching up from all that - thus the extra fundraising for the girls.  But the big deal is equipment.  I've got stuff to purchase that will make Q's life better, easier, more fun.  Insurance won't cover the new car seat he needs, nor will it cover the jogger/biking chair.  I'm still narrowing down the car seat options, but the running/biking setup will be the Wike.  It will require modifications to make it fit, but it's half the cost (approximately $1300, total) of the other option, so we'll make it work. 

After I've figured out which PayPal hoop needs a different maneuver to finally get through, I'll post the button along with possibly more information than anyone needs on why these particular pieces of equipment.

Well, I've blown off my list long enough and need to go deliver the next dose of meds to Q's sleepy little mouth.  And then, to bed.  G'night.

It's May?

Well look at that - I missed April altogether.  It was a rather surreal month, what with the surgery (it went very well), giant cast (glad it's gone), miscellaneous tracking of nine different prescriptions (now down to the usual three, plus one lingering med), and the persistent muscle spasms following the surgery (massage has really helped).

Following Q's surgery, his sisters traveled to visit their dad.  G went later, on his scheduled spring break.  (He hasn't returned - that's a conundrum, which will hopefully resolve soon.)  The girls came back the week that the ginormous cast came off, and Q is now ensconced in a smaller brace.  After three weeks of the brace coming off only for therapies, changes, and baths, we're now working ever so slowly up to having it off all day.

Meanwhile, the lovely girls have been helpful with Q, done schoolwork, managed projects (indoors and out), laid plans for fundraising for Suzuki camp and new violins, studied for baptism, practiced and performed very well at their piano recital, and generally been a blessing and a boon to whomever they hang out with.  (I'm really not exaggerating, despite my mom-bias.  I'm terrifically proud of them.  Yes, I'm officially bragging.)  Next up: painting their bedrooms (I have a gift card to Home Depot...).

I got to meet the founder of this amazing place today.  If you happen to need an organization to donate to, think of them.  They do fantastic work.

The boy is asleep now - sleep has become a recurrent issue post-op and with related medication weans.  If you pray, I'd appreciate your prayers.  I do not want to do another protracted period of no sleep.  I guess I've adjusted to this (I have managed to leave the house with my shirt on frontwards), but I would be ecstatic to skip having to hang out in the "up all night" part of life.  (Side note: I don't know how mamas of newborns do it in their forties and beyond.  Heavens!)

Because Q's out, I'm crashing too.  I've used my evening well - pulling together part of the paperwork for the 2012-13 school year (yes, already - time is just flying!), and the rest can wait until tomorrow.  Such cool stuff.

Happy Mother's Day, you lovely mamas.  Whether or not Time magazine agrees (and who cares) - we're all "mom enough."  Kiss those babies!  (And their mamas!)

XO.

Zoom

Hello.  I'm posting quickly, en route to bed.  Morning brings the pre-op appointment for Master Q, so the schedule will be full.  We've been sick, so energy is in short supply, mostly for me.  I think the kids have either escaped this or had lighter versions.  So far, Q hasn't shown any signs of the nasty bug.  If he's going to have it, I hope he's already exposed.  I'm sure the surgery team won't proceed if he's ill.  He's scheduled for March 22.

We're moving furniture and rearranging the house so I can get the boy's bed moved downstairs.  After the surgery and casting, Q will require two people to transfer him from place to place.  The stairs are a good workout with the young man at 42 pounds, but the cast will be heavy and unwieldy, making the stairs non-negotiable for now.  Still to be worked out: feeding and transportation, since he won't be bendable for 6-8 weeks.

I'm off.  More to follow!  Hope your March is winding down, lamb-like.  Pax.

Equipment

Good advice.

Models and manufacturers to consider:
Merritt
Recaro Monza

I've looked over the Britax Frontier 85 and a Graco model as well, on the advice of the awesome equipment wizard OT who sees Q sometimes for equipment and adaptive helps.  It doesn't appear that either of those will work for Q, as he needs greater support for sitting.

I continue to think about the Otto Bock option for combining a seat for the young man with biking and running sport bases.  If I had the extra cash, I would snap up one of those side-by-side tandem bikes that he loved so much last summer.  E and G peddled him around the parking lot to squeals of laughter, and protests when they stopped.  They all seemed to enjoy the experience and S and K wished they were big enough to peddle too.

Lots to think about.

Mid January

Hello and Happy New Year!  We made it through the busy holiday season, with all the performances and scheduling disruptions.  The big kids went off for time with their dad.  Q saw him at the airport, which he loved, as always.  He no longer suspects the kids aren't returning, though he'd not in favor of them leaving.  Progress!

Early in the month we visited a new physician.  This visit was to talk about the possibility of eye surgery being combined with the hip surgery.  The doc was lovely, and the decision for now is to fix his lateral eye muscles and see how well that sticks.  The concerns are related to the quality of the tissue and whether or not Q would smack the area with his hands (in splints), thereby undoing the dissolving sutures.  If the sutures are disrupted or his muscles don't hold the correction well, the boomerang effect pushes his eyes farther along the continuum, in the wrong direction.  The nice lady would base the decision to go ahead with the medial adjustments on whether or not the lateral procedure holds.  She says the first would be less painful, less intrusive, and works better as a bit of a test run.  I don't know.  I feel like I usually walk out of medical appointments with a pretty clear idea of how we're proceeding and why, and I don't know why we'd do this.  I mean, the hope is that his eyes are physically steadier and appear to track together better.  But...  It doesn't seem likely that he's having double vision, since binocular vision is really a case of eyes alternating very quickly between them, not actually concurrent use of both.

I would so love to have a knowledgeable pocket elf at these visits, to weigh in and tip the scales decisively.  In lieu of that, I'll read some more, I guess.

In other news, the big boy is finding his way in high school.  The girls continue with school and are just about to begin the second half of the school year.  Q attends a developmental kindergarten three half days per week.  It's pretty awesome to see how each of the kids' early efforts is unfolding as they build upon acquired skills and knowledge.

We've welcomed a wee little new cousin and attended a memorial service for her grandpa, a very good man who is greatly missed.

The house is benefiting from a rework of chores assignments, and we're glad to have power back after a recent wild combination of snow, ice, and wind storms.  It was great for the kids to have prepped for the occasion with bread baking, cooking, and laundry.  We only had seven loads to do to catch up completely from two days without power.

We're all set for the next round, and have a greater appreciation for both our gas water heater and the need for good emergency preparedness.  Prescriptions and supplies work a little differently here than in many households.  Q's nutritional needs being what they are, we've got shelf-stable back up for him, in addition to the usual stuff you'd have on hand for everyone else.  We've got a shelf full of water in the garage, too.  And I'm thinking it's time to run through the list again, while there's no pressing need.

The house is quiet and we've a busy day tomorrow, getting ready to tackle the upcoming week, so I'm off.  Godspeed.

PS

...To the meds coverage story.  I did it.  The pharmacist was surprised, and she said so, but I did it:  Q has the Prevacid prescription and it filled.  The pediatrician wrote it for "ONE YEAR," "dispense as written; patient has swallowing difficulty" and it went through.  We'll see what happens when we hit the 90-day mark and the state wants to have this conversation again. 

Next step?  To get a response from the state for the pharmacy corporate office with regards to refunding my out of pocket expenses.  Prayers over this would be appreciated.  I will get this done, too, but (whispering) I'm a little tired...  At this point, we could use that refund (we're out of eggs) and this thing needs to resolve this week because I have the next level of things to move on.  No time for lollygagging, dontcha know! 

In the meantime, I'm going to go sleep so I can be all bright-eyed and make more applesauce and apple butter tomorrow.  Ooo - maybe some pear sauce, too.  Cheap fruit = good, cheap food.  Wheee!

Good life

Such a lot of water under the bridge(s)! 

Let's talk about Mr.Q first.  He's has been sleeping... well, not great over the last couple of weeks, resulting in new local peaks in pharmaceutical caffeine use (by moi).  The rehab visit went well, but I'm having trouble wrapping my head around the A & P aspects of the selective dorsal rhizotomy discussion.  It would seem that new, more delicate techniques and growing experience in neurosurgery are allowing kids who have inappropriate lower limb tone to benefit quite nicely from a procedure for which they would not have previously been candidates.  Hooray!  So perhaps that would be an alternative to the Baclofen pump.  The thing is, every time Q's Baclofen dosing has increased, so has his swallowing ability, vocalization, overall healthy muscle tone and mass - all of these are huge.  Just huge for him.  So at this point, I'd want to go ahead with the Baclofen pump at some point, even if there would be excellent gains to be made in the rhizotomy - Q needs those upper trunk and extremities benefits.  I think that's part of why he hasn't had any remarkable respiratory events (requiring steroids of any kind or breathing treatments) in almost two years.

But back to that "rhizotomy" word.  I usually take in all the info for these appointments, go make notes, read whatever reports that are sent, synthesize with other things I know about Q, and on we go.  But that word...  It means "to sever nerve roots in the spinal cord."  I just kept looking at his little back, then at the drawing on the white board, showing how certain little roots get clipped and where.  His skin is all soft and unmarked there...  I do get that the hip surgery and a possible placement of a pump also require incisions into that perfect little skin.  There's just something about this procedure that seems somehow worse.  As if there's a hierarchy for incisions...  I still have that spot picked out in the backyard.  For puking. Which doesn't seem at all theoretical to me...

Q had two evals on the same day with the OT/PT pump placement team.  I don't have reports from them yet, but I expect them to say that a pump would be appropriate when Q's tone has reached the point that we feel life is unworkable here.  He's tighter now than he was a few months ago, despite PT, massage, stretching, and Baclofen.  So dressing is tougher, as well as arranging him for sleep, transfers for bathing, feeding, etc.  As much as he wants to help, there are definitely certain losses in progress.  He is more volitional or intentional (both?) about his own position - working to hold himself up in his chair before he's completely buckled or strapped in,  holding up his hands for dressing or undressing (and laughing like mad as his fists emerge from the sleeves), lifting his pelvis for pants or changing.  He's working more purposefully, but he's tighter as he does so, if that makes sense.  All things to consider.

I know there's more, but I need to sleeeeeeep (whine).  We're running  four days a week as we train for a December 5K.  The girls are noticing their muscles are different, which has provided neat segues into conversations about body image, confidence, and how to be the best person we can each be (vs. "fitting in" and trying to be like someone else).  We've also got the usual subjects on deck for school, plus it's been fun to discover that Q is studying a little medieval history in his kindergarten class while his sisters are digging into it  at home.  G is finding his feet at high school - discovering the need for hard work in addition to good test scores.  And what a lesson to apply throughout life:  one must show up for and complete the difficult things as well as the fun or easy.  (insert eyebrow waggle)   In the meantime, he's enjoying after school activities and hanging out with neighborhood friends, though his mother wishes he had more homework because kids these days need to work harder!!  (Heh.)

So because of the above, I've got to get to sleep.  My syntax is suffering.  And since I've just poured lemon ginger tea down my shirt...  G'night. 

Still

So we've had an unusually big week.  Between the whooping cough exposure scare, the orthopedics appointment, and sundry volunteer projects, we've slid into Friday just about toodled out.  Among other exciting details for this week is my ongoing argument about coverage of one of Q's meds - it's been a particularly bad time to pay out of pocket for a generic which is running almost five bucks a day.  But here we are.

On Thursday we got to help put together the bound schedules for the Suzuki camp which begins bright and early Monday morning.  The kids have been practicing the music for their groups as well as their pieces for the master classes.  It's a little surreal to contemplate, how all their effort comes together for them.  They've been taking violin for three years now, G has had about a year on the viola.  It's pretty thrilling to watch and listen to them play in groups, and their solo performances are coming along nicely - E especially so with fiddling.  The bigger three have been taking piano for almost six years, S for five.  K and S are streaking out ahead with piano:  K has been pushing G and E for a couple of years now, while S just recently announced that she believes she's at the place where she's now just going to play for fun, it's that nice.  See me grinning?  I listen to them these days with my heart in my throat, amazed at all this progress.

About Q's ortho recheck, then.  The x-rays this time show his left hip out about 75%, as compared to the 60% from earlier this year, with an increased slope in the socket.  His right hip is out a smidge farther than it was last time, but not much a'tall changed, though that socket appears to be somewhat more sloped as well.  We discussed the options for surgery, for waiting, for injections into Q's thigh muscles.  I asked the surgeon what he'd do if this was his kid.  He grinned, self-deprecatingly, knowingly, and said that there just isn't a right answer, but given how engaged and responsive Q is*, he would go ahead with the surgery to change the angles in both femurs, build up the left socket, and look at the right socket once in surgery to determine whether or not he needs that socket built up too.  There's a 5% chance that Q would need a transfusion (the pelvic area is highly vascular) with both femurs and one socket, but about a 40-50% chance of needing a transfusion when the second socket also requires work.  About 3% of patients seen through this clinic (children's hospital) require another surgery to tweak something or make further changes after the initial surgery.  This is important partly because if that right socket needs work, better to do it all at once, because it's a not-fun recovery.  So if there's a 97% chance that the first go gets it all, best to do it then - which leads us to wait a little longer.  The ortho guy said that since there's been some small changes in that side that we'd have a better idea in another six months.  So Q goes back in February for more pictures and another chat.

In the meantime, we've therapies, dental appointments, orthodontist appointments, school, school, and more school to do.  Q begins kindergarten in a few weeks (gak!).  G begins the tenth grade (how did that happen!?) and thinks about getting a job to pay for all the cool stuff he wants to do.  And the girls push on ahead in their studies, too.  I may be a little bit of a geek, because this all seems like pretty exciting stuff to me, this growing up and out of the kids, this new school term.  This stretching and testing of their ever stronger and more capable wings.

*You may recall - I hope I mentioned this before - that there's a study out of Australia indicating that the more engaged and "verbal" a child is, the more likely he is to have pain with subluxed hips.  In fact, it's nearly 100% vs. about 40% for kids who are less interactive.  In other words, there seems to be a connection between how much a child is trying to venture into or respond to relationships, typical presentation or not, and his or her pain levels.  This fact drives me a little crazy.  Imagine all those punkins who have pain and can't communicate it.   Thinking about it feels like toothpicks in my brain.

I had a moment on my back porch (my back porch!) with a nice glass of ice water, checking out the stars as the sky emptied its light into another hemisphere.  You'll be relieved to know most of them are still out there.  The backyard rocks continue to proliferate like bunnies.  I've had some help with the weeds - thank you (you know who you are)!  And the wee little discount/saved from death plants are looking like they may yet choose life.  It smells good out there, all sweetly herby and verdant in our wedge of earth.  It's quiet and a little damp in the coolness of the day.  Dewy, I guess. 

Peaceful. 

Peace-filled. 

Come on over.  I've got ice water.

Apropos of Nothing...

I'm thinking on this as an excellent item for inclusion in life skills discussions.  Perhaps difficult for some parents, but when thinking about things like adrenal exhaustion and long-term consequences - man, seems like a no-brainer to me.

In other news, the kids are home.  Yay!  The morning activities prior to my getting to the airport demonstrated the growing complexities with Q.  Again.  Thinking on that for now, and hoping for forthcoming solutions.

I don't know how to speak about the kids visits with their dad.  They love him so much, and rightfully so.  He's their dad and they need that relationship, that champion who only shows up in daddy clothes.  And also, there's fallout.  Uncomfortable questions.  Sadness at the very real losses resulting from his absence in their daily lives.  So.  Lots of tears tonight from one of the punkins.  It can be hard to keep one's head together under the abrupt changes occurring with visits.  Q had a hard time eating tonight - as he does during the beginning days of the big kids' absence.  Here's to an easier day tomorrow.  Yes.  That.

Gotta nail down a few of life's details before I hit the sack.  Huge shoutout to the people who took care of Q so I could go get the rest of the kids.  Hope life is being kind to you and yours.

Midsummer Night

A song.

I have a little lesson planning done, a little housecleaning done, a little sorting done, a little digging in the yard done.  But Q is fatter and happy, and that is the primary job here when the bigs are out of town, so hooray for us.  In the morning I will fly down to pick them up and they'll be tucked in here tomorrow night.  Can't wait to squeeze 'em!  Two have had birthdays of some consequence whilst off visiting, so this will be exciting.  Have I mentioned that G has his permit?  See how my eyes bug out while I think about this?  There's always a new phase of life to enter, isn't there? 

Better scoot to bed so I can get Q fed and head off to the airport in the morning.  Tra la!  Hope you're reveling in a little summer bliss.

Daddies

Happy Father's day!  Early!  Because it's that or I'm likely to forget until Christmas!

I'm feeling a little old - too much going on and I always feel a little panicked, like something's been forgotten, like I'm being chased, like tomorrow's The Final and I'll be forgetting my pants.  Again.  Thus the sporadic posting.

Q had a follow-up dental appointment today, which he laughed his way through.  Those crazy people with their glasses and lavender face masks, plus their blue gloves!  Hilarious.  He has a tiny cavity, still.  The spot that was filled last time has been retouched, but the tooth looks great and he won't be keeping them for long.  None loose yet, but it's likely to be soon.

Previous appointments to catch up.  Neurology and rehab.  There's not much new about neuro.  It seems like Q's having stereotypies sometimes.  This is probably no big deal, just a quirk.

The rehab visit was interesting.  That day included x-rays to check out Q's spinal integrity and belly spacing, before the visit with the neurosurgeon to determine viability of a Baclofen pump.  The neurosurgeon provided the dour and pessimistic version of what to expect.  He felt he needed to provide a foil to the Medtronic CME I attended a couple of summers ago.  Heh.  So the downsides are failure or malfunction of the equipment, failure of the surgery, infection, scarring, medication mishaps, and more.  It's a relatively small risk, compared to the prospective benefits, but real, nonetheless.  Five days inpatient time after the procedure.  Training on the remote and troubleshooting of the pump, what to watch for medically if something goes wrong and there's a medicine dump.  And return visits to reload the pump.  Eventual replacement of the equipment.  And more.  It's a lot to take in, but between notes and research, it's all good.  The neurosurgeon gave the go-ahead, and we went on to the rehab visit.

The rehab doc is super cool (I mentioned this before) and tends toward cutting-edge info and approaches, which makes my busy mama brain happy.  She sat Q up on the table and put him through his paces, looking at a variety of poses and stretches and pronounced him not a great fit for the Baclofen pump.  Okay.  She'd like to have him checked out by the PT/OT team who do the evals for the pump placement before thinking about actually going through with anything for tone treatment.  Rollercoaster day there, with long waits, lots of running from one department to another, fairly exhausting, and then...  nothing. 

After talking at length with Q's rockstar PT, it sounds like we'll be looking more closely at a nerve block before going ahead with the hip surgery.  This would help with post-op pain and tone management, allowing for a better surgical outcome as he heals.  The next appointment with the orthopedist is in August, and I expect the films to reflect zero improvement.  A miracle would be lovely and most welcome, but surely not typical.  The heads of Q's femurs would need to move more than forty-five degrees in a medial direction, and his hip sockets would need to deepen considerably and change orientation.  So we'll just be thinking of when to do that, and planning accordingly.

Equipment updates, since we're here:  Q's been able to use his iPad a bit more in school, with some reconfiguring of the icon size, courtesy of the school SLP.  He's switching to a different school next year for kindergarten, and we got to meet the team there - awesome.  I've already had an email from the developmental classroom teacher.  And it's all just in time for the new wave of equipment.  Q's chair is at it's fullest extension in the seat, but has a smidge more in the back.  We've got a few months to figure this out and get the new one here.  The rockstar PT and local equipment rep are thinking about the Kimba.  This option looks good for him, especially because of the base types.  We'd likely order the version above, then go for both the other bases - one for interior use (a hi-lo base, adjustable for table heights and great for kindergarten), one for sport use - because we're often out and about, trying for as much uneven terrain as possible.  Heh.  He benefits from as much safely supported wobbling about as he can get - it helps strengthen  all those teeny muscles around his spine which let him know where he is in space, and it helps his head positioning.  More on that in a minute.  Parts of this system aren't likely to be covered, so (deep breath) I'm going to be fundraising. 

His Rifton stander/walker is also on it's last legs.  Pardon the pun.  He's using it at therapy with a tray on it, which has been added by the magical OT and his team to add height and thereby eek out another couple of months while we await the next one.  I don't think we know what that next one will be.  Maybe a sit to stand model?  He's getting bigger and that version is likely to be an option at some point.  Maybe not just yet.  In the meantime, we have a suspension gait trainer and we're working it out. 

Head positioning.  He's done some amazing work on switches lately with a combination of perforated black plastic lensed glasses and a stiffer support collar.  He's had a soft cervical collar, which was cool (helped him wobble from a more neutral neck position, instead of severely anterior), and in preschool used a head support designed for car seats (gives him a little feedback so he returns to neutral more quickly).  I want that support collar for him because he looked incredible in that switch lab: using his hand gently on the switch, turning screen pages when asked, waiting appropriately for the next opportunity to use that switch instead of just bashing the switch button.  It was several steps up from the work he was doing during the last round of switch intensive OT.

Gotta scoot.  Big day tomorrow, lots to manage. 

Happy Father's Day, to all the magnificent daddies out there.  You rock.  And the world is a better place for your being in it.  Thank you.