Monday, December 24, 2012


The Cherry Tree Carol

Blessed, silent night to you, lovely peeps.

Wednesday, December 12, 2012

Three Good Things

1.) Enough warm blankets.  We're trying to keep the thermostat low, a challenge with a kid who doesn't self-regulate body temp as well as one might like.  Over the last few years, it seems I saw some good clearance sales.  We are grateful to be warm.

2.) Running shoes.  An angel made these possible.  Our old ones were past their explorations and coming apart.  Being able to take the kids out for a readjustment of our spines, our attitudes, and literally, of our brain chemistries, is a phenomenal gift.

3.) Kindness, generally, and overwhelmingly.  The girls and Q are good workers, but they would not be where they are right now without this year's gifts and loans of books, time, clothing, music, and all things related to their trajectories.  I'm especially grateful for a gift-ed box of Puffs tissue, which is the nicest thing I've ever had for blowing my nose and wiping my eyes, a thing which I need to go do again right now.

XO, lovely peeps.

Saturday, December 01, 2012


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.

Tuesday, October 23, 2012

Growing boy

Q's awesome PT fixed the wheelchair today - back pulled up higher, headrest dropped, side supports measured, repositioned and tightened down, footrest adjusted, and front tire re-inflated.  The setup looks great, though the chair now needs to be partially collapsed to get it into the van, or tilted back with the footrest closed in order to get it inside before it will fit inside.  The tire thing is driving me a little nuts.  We've been pumping them up over the last couple of weeks and they're clearly just not holding air for more than a couple of days.  I had hoped they'd hold better than that, since the budget isn't currently allowing for any unplanned purchases and I think we're out of the internal tire repair goo.  I'll look again tomorrow.

The boy has grown rather a lot since the surgery and ensuing appropriate management of gastric emptying, and now needs the next size up in leg splints and pants.  So crazy!  His therapists are currently working on prescription requests for 2-4 sets of hand splints, new AFOs  (feet), wheelchair, and walker/stander base. 

Meanwhile, Q has been spelling words in pool OT.  C-A-T,  W-E-T,  R-A-T,  T-A-P.  And "Ryan" - a pool therapy buddy.  This has prompted his OT to question whether or not he's getting enough cognitive stimulation in school.  Not because the team there is necessarily falling down on the job, but because he's a subtle and complicated kid, and therefore hard to read, hard to assess, hard to draw measurable responses from.  So.  Lots of challenges.  Never a dull moment!

Here's hoping you all are having a sweet fall, a lovely time of cozying in with your people, and looking forward to wrapping up 2012 - it seems like it's flying past!  XO.

Thursday, October 11, 2012

Day in the Life

12:04am - Reposition Q.
1:30am - Reposition Q.
4am - Awaken to Q giggling.
4:40am - Still giggling, shushing him is even funnier.
6:30am - Turn off alarm.
7:30am - Rocket out of bed as Q's helper arrives to feed him breakfast and get him off to school.
8:25am - Fly out the door with girls and breakfast, drive to violin lessons.  History CDs en route.
9:30am-12:50pm - Violin lessons, taking notes, make notes for history lesson plans, take several calls re: Q and meds, girls alternately in lessons, doing reading and math assignments, and cleaning/helping with punkins.
1:05pm - Freeway on-ramp, more history en route.
1:40pm - Deliver mom's cell phone to her at work and have lunch.
2:45 - After being stuck in traffic for too long, determine that there's no way I can get to Q's AAC appointment before it's over, head to get gas instead, swing by the discount plant dude.
3:20 - Arrive home, unload people, do reading exercises with one kid.
3:30pm - Q's helper arrives.
4pm - Leave for orchestra, plant research and history reading while girls practice.
6:10 - Arrive home, start soup.
6:20 - Head outside for a speed-clean and organization of garden (rain starts tomorrow), squish one kid's toe with wheelbarrow full of dirt (sob).
7:30pm - Feed the people.
7:45 - Q hits the sack with meds, research literature titles for download while one kid writes a fan letter to the author of her math curriculum.
8:45pm - Read two girls to sleep with Bunyan's original apology for The Pilgrim's Progress.
9:20 - Listen to last girl rhapsodize about algebra.  (Yes, algebra.)  (Not the same kid who wrote the fan letter.)
10pm - Last kid to bed.
11:11 - post this and dose Q's meds before falling into bed.  (thud)

Saturday, June 16, 2012

Almost summer

Sometimes when I reach the end of a week and look back over it, I can't figure out why I'm so tired.  This is not one of those weeks.

The girls have been busking at a local farmer's market to raise money for violin camp and new instruments.  They've decided that Q is their muse, since they got a LOT more cash when he was parked right there.  And if they could play only Danny Boy, over and over again, they'd be able to fund everything, right through grad school.

E had a grad celebration here last Sunday.  A wee open house, with friends hanging out, nibbling the first local strawberries and ganache with madeleines.  It was crazy fun, with great conversation.  What was probably the best thing that could have happened seemed at the time to be a disaster... 

Saturday night Q threw up his whole supper.  It was one of those moments when things will break hard one way or the other, but there will be no middle ground.  I was not in the room.  By the time I returned, the girls had mopped, cleaned the magnetic letters he'd been playing with, cleaned him up, changed his clothes, and resumed life.  At that point, there was nothing to do but keep moving.  It was clear that the rest of the party prep wouldn't be happening that evening.  So we all took a deep  breath and went to bed.  (I did stay up and finish tidying the kitchen a bit...)  The next morning, we folded laundry and headed out for the aforementioned busking.  There just wasn't really another option, you know?  And  it was good.  Dropped the expectations of having everything "just so" right off a cliff.  We were much more relaxed.  Could this be the next trend - pre-party puking?  Yeaaah.  No.

Monday we began the annual year-end stuff in earnest, writing summaries for each subject, and submitting paperwork for this year and next.  Once that was done, we moved on to testing.  The kids did MSP testing earlier, but we have continuity with CAT and I wanted to see how they lined up with previous years, so away we went.  Watching them work was informative.  I have one who needs more work with dictionary skills, one who needs a little clarification on map reading, and I got to see real leaps in language skill.  It's hard not to just cheer wildly when they get some difficult thing just right and they know why they did it.  Goosebumps!

Q's little incident Saturday night was especially tough because we've been working hard to keep calories in him.  Since the surgery, he's had persistent vomiting, often resulting in the loss of 2/3 of his meals over a couple of days.  He'd lost weight, which was expected with the surgery and casting, but the vomiting was happening at least every 72 hours for too, too long.  I kept watching him, and noticing how there was sometimes a few more hours added to the stretch.  After one of the more spectacular events, we happened to have a rehab appointment.  This doc is the head of the department at the children's hospital, and a prof at the local U school of medicine.  And she. is. awesome.  I asked her if there was any reason to think that we couldn't give him Zofran, break that cycle, and then just move on.  (Q's pediatrician was appropriately concerned that the Zofran would be masking something and did not want to prescribe without an all clear from specialists.)  She agreed that since Q was having slightly longer stretches of time in between, that shooting for a week of no puking would likely break the cycle.  The pediatrician wrote for the meds (which required a wrangle for coverage - apparently they only allow ODT anti-nausea/anti-emetics for people on chemo, but since Q has an established history of dysphagia, there was less arguing than there might have been...), on the condition that we get in ASAP for a GI consult.  So we did. 

Tuesday Q saw a doc who was there, I am convinced, because he was supposed to be.  He's new, recently moved from the southwest, and could not stop exclaiming how much Q reminded him of a particular kid he used to treat, from diagnosis to physical appearance (it's the wicked long eyelashes).  He explained that the same interruption in neuronal waves that caused Q's neuro and motor difficulties, also caused a less active gut.  We talked about Reglan, which had significant and immediate side-effects for Q (he was not surprised).  The upshot is that I got props for Q looking positively great for where he is post-op (huge credit goes to the therapists who busted their schedules to get him into the pool four times a week for four weeks running), and looking great overall (he was surprised that Q hadn't required surgeries or had hospital stays before now).  He was hugely and specifically complimentary (especially about my having insisted on breaking the puking cycle with Zofran - only three doses!), engaged with Q,  and identified immediately what we needed to do next: tests. 

The girls will fly out in a few days.  E will be flying north again in a couple of weeks to earn money for school and camp and a new violin.  K and S will be staying for a whole six weeks, which has me positively nauseous.  We've talked about this being longer than they've ever been gone before, and they're both excited and a little sad - I'm sure it's pretty much the same mix of emotions they experience when coming back from a visit.  It's tough to be split between two places, poor punkins.

I'm trying to keep things light and productive here, with a smidge of school to finish Monday, around a set of piano and violin lessons that we're cramming in before they go.  Every day will be full, with their last busking effort Father's Day from 11-1 (come by!).  I'm hoping to have enough help with Q to allow time for projects: the garage needs to be cleaned out and reorganized, the "guest room" needs the same, and there are a bazillion little maintenance projects (starting with paint touch-ups).  And then there's the back yard...  Oy!  Between three or four teams of people, there might be hope for rendering the space user friendly for Q, while knocking back the Rampant Meadow theme.  Grandma and Grandpa have loaned a flame thrower - satisfying to watch the blackberry canes sizzle.

We've got our last orchestra commitment in the morning.  Q's asleep so I'm crashing.  More about the car seat adventures next time.  XO.

Wednesday, June 06, 2012

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.

Saturday, May 12, 2012

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!)


Friday, March 16, 2012


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.

Friday, February 10, 2012

Hiya.  Life's been busy here, full of lessons and practice, therapies and running, rhythms of chores and sleep and cooking and laundry.  I suppose it could seem endless, but it doesn't.  It's home.  The kids are having the usual triumphs and hiccups of childhood, plus their own variations on the themes.  To say there's a lot to manage these days would be a bit of an understatement.

I've been mulling over things this week and I guess I have more questions than I have answers.  For argument's sake, if you were in a position to know something, to have science and experience on your side, and to also know that this something would be a real solution for someone you know or someone you love...  What do you do when that person won't listen?  Do you let it go?  The answer is different if you're considering the needs of a child or truly helpless person, of course, rather than those of a fully competent adult.  What if that person is antagonistic?  Paranoid?

I'm mulling because I keep running into situations where someone involved has a very workable answer but the person who needs it most refuses or is unable to take in the significance of the solution being presented.  This happens often enough that statistically I have to be that person who refuses or is unable, at least once in awhile.  There's a humbling thought.

So I guess I try to hang back a little, if I suspect that I'm making a fool of myself.  I think it's useful to walk around the problem or puzzle and see it through new eyes, asking for input, often from unlikely or even contrary sources.  I don't know.  Sometimes things are just a mess.  Sometimes knowing something doesn't do any good.  Smart people have been wrangling the problem of pain and suffering for as long it's been around.  I don't have anything to add.  Just thinking.


Wednesday, February 01, 2012


Good advice.

Models and manufacturers to consider:
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.

Monday, January 23, 2012

Praying without ceasing

I've been thinking about that call lately - to pray without ceasing.  Many years ago, someone asked me how, with three kids and one on the way, I found time to pray.  I answered then without pausing to think, that I prayed throughout the day, sometimes over the dishes or in the midst of changing diapers, soothing little ones, holding hands with their daddy while on a walk with the family, or doing laundry.  Stoplights are good, too.  That conversation stuck in my head because I hadn't realized at the time what I'd been doing.  Something about the sudden awareness, combined with the sweetness of praying peace and blessing over my people, big and small, while tidying also their more immediate, physical world, managing the quotidian...  Well.  I'm not going to claim that there's a reward in scrubbing toilets that extends beyond the clean toilet itself, but the combination of prayer and acts of service, done in love, with a joyful sacrifice?  The parallels to the big picture life we're meant to lead are stunning to me.  I continue to turn that conversation over in my head and find new things to think about it.

So the phrase has been bouncing around in my head again lately, especially as folks near and far have had a tough time, and sometimes their suffering looks to be taking the day, stealing the bliss out of the ordinary.  I was thinking back over 2010, and how glad I am that it's over.  There was this time, a stretch of weeks, wherein high drama, legal issues, health scares, kid stuff, financial swerves, bad news, and sundry emergencies were popping up not more than 72 hours apart.  It was a lot to take in.  I think right in the middle of all that was when I started pondering those words again.

As to what it means?  How to apply?  Well, I'm not really comfortable throwing out some sort of mandate or absolute, but this is what I think about when I think about praying without ceasing: We're supposed to take care of each other.  Sometimes it's a grace-filled, rich and profoundly rewarding thing, sometimes it's a balancing act, performed with swords and running chainsaws.  But it's the huge, all caps, shout it from the peaks, why of this life.  Jesus modeled it, told stories about it, asked it of us:  Love one another.  Those little spaces of prayer hold up our arms while we're working away, trying to make sense of things.  Those little spaces of prayer blunt the swords and chain saws, and allow grace to fill up and overlay not just the high points of time with our people, but also the disappointments and emergencies, adding to our resilience, enabling us for more than we might have suspected we had inside us.  And during those minutes, hours, weeks, whatever, when it just. keeps. coming?  Wow does that resilience, that focus and connection, wow does that make the difference.

Here's someone I "met" through a friend, someone who has already in her life as a young mom had the full allotment of opportunity to practice resilience and praying without ceasing.  I think she'd appreciate your prayers.


Sunday, January 22, 2012

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.