Merry Christmas

To know and to serve God, of course, is why we're here, a clear truth, that, like the nose on your face, is near at hand and easily discernible but can make you dizzy if you try to focus on it hard. But a little faith will see you through. What else will do except faith in such a cynical, corrupt time? When the country goes temporarily to the dogs, cats must learn to be circumspect, walk on fences, sleep in trees, and have faith that all this woofing is not the last word. What is the last word, then? Gentleness is everywhere in daily life, a sign that faith rules through ordinary things: through cooking and small talk, through storytelling, making love, fishing, tending animals and sweet corn and flowers, through sports, music and books, raising kids — all the places where the gravy soaks in and grace shines through. Even in a time of elephantine vanity and greed, one never has to look far to see the campfires of gentle people. 
~Garrison Keillor

Quote

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief...and unspeakable love.

 

Washington Irving

Voting update

We're #33.  WOW, people!!  Eleven hours to go...

Vote, redux

Vote, vote, vote!!!!!

We were #42 a few minutes ago - thank you for voting and sharing the link!

Vote!

A charity I'm involved with, Out of the Gray, is in the middle of a contest - the winner receives a $5000 grant.  Here's the link, and we need your vote!  This money would provide care and clothing for sixteen caregiver clients.  There's an awful lot of need these days, what with budget cuts and jobs lost.  Please take a moment and add your voice to the votes - then feel free to forward the link to everyone you've ever met.  (heh)  We sure appreciate your time.  The contest ends on the 9th of December.

Blog - Style with Purpose
Facebook page - Out of the Gray

Trust, morality -- and oxytocin

Just thinking about all the things this explains in our every-days...

Paul Zak: Trust, morality -- and oxytocin | Video on TED.com

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. 

Whoosh

This is amazing.  Transcendent, I think...

Light reading

Neuronal migration defects.

Spot on

Sissy Free Task.  Indeed.

Since I'm here...  The ongoing prescription argument is frustrating.  Q needs the solutab.  We've tried the liquid proton pump inhibitor (neurological side effects), Prilosec OTC (didn't work).  He can't take Zantac, because it's in capsule form.  There are little packets of soluble powder that could be mixed with sugar water, but that's omeprazole, the same med as Prilosec, which didn't work.  Meanwhile, there's no word that the paperwork is getting where it needs to go, and the manufacturers have either stopped making the med permanently or have been on backorder since June.  There are non-generic solutabs available, for which I will still be paying out of pocket, but instead of almost $6 each, it's more like $10.  So.  As soon as Q is on the bus in the morning, and just before the girls and I sit down to contemplate the birth of astrophysics, fractions and variables, predicate nominatives, and the medieval-era invasion of Islam, I will make the rounds again on the phone.  I shall strive to be...  Well.  Let's aim for patient, shall we?  I first began this conversation in May, so I think the bar of patience is plenty high.  I do have the phone numbers of all my state reps, and maaaan...  I'm considering using them.

Time for sleep.  Peace out.

Info.

Our church seems to be preparing for ongoing conversations about mental health issues.  While thinking about this and some events that have led up to this, I've been reading about and ruminating on a few diagnoses.  It's pretty fascinating stuff.  As difficult as the subject matter can be, especially when families are suffering, remaining blissfully ignorant isn't really an option.  Knowledge is power and ought to help us better understand ourselves and the people we love.  Here are a few links.

Borderline Personality Disorder
Major Depression
Beyond Blue - a very useful blog
Amen Clinics - brain care and brain health, started by Dr. Daniel Amen
Traumatic Brain Injury - MedlinePlus, with links to other pages
Traumatic Brain Injury - Wikipedia, with more detail, discussion of current grading techniques, etc.

If you have good resources please share!  Pax.

Onward

We're now in the middle of the week in which we do our church's version of VBS - with dinner served and lots of cool projects.  So much fun!   G and E are serving as "table captains" which is sort of like a camp counselor role to the other kids.  E has a table of four little girls and they're all doing these projects together.  So stinking cute!

The director for our camp last week gave me a jar of dahlias Monday evening and thanked me for bringing Q to camp.  I cried.  She told me that there were so many faculty and staff, and other parents, who commented on our neat family dynamic and what an amazing job the bigger kids did with Q - especially when we were seated on the front rows for the concerts and Q was loving all that live music, and wiggling like a boy who'd been sitting still too long.  I hugged her and cried.  How incredibly kind of her to have taken the time and acknowledged both the beauty and the difficulty in one fell swoop.  It is both.  Always both.  But the former far outweighs the latter, in sheer mass.

And speaking of all that Life business...  You know, I've given up a lot of thoughts about what constitutes an "ideal" family.  I was somewhat surprised to discover, rather recently, that I really do still miss the partnerships to be found in a good marriage.  Even a barely civil marriage provides certain benefits to the spouses, most of them simply logistical.  But even in a just better than barely civil marriage, those losses begin to be keenly felt.  Imagine how lovely it would be to know that the end result of one's hashing things out with one's kid didn't then rest solely on one set of shoulders.  Support in or for one's ideas is sweet, and deserves to be treasured for the gift that it is, of course.  But nothing replaces that other parent "having your back," you know?  In all those small but important ways.

Hope you're resting well and got to spy some meteors this week!  Godspeed, lovely people.

Immersion

So we're at Suzuki camp.  Q has had a hard time settling the last three nights and tonight, in addition to us singing him The Two Grenadiers, in parts, G brought his viola and quietly played Q out with Humoresque.  I've frozen those moments in my head so I can have them always:  Q draped across me atop his bed on the floor, drooling on my shirt, almost trying to still fight sleep, K in her bed, S snuggled with grandma in her bed, E in the shower, and the giant boy who is taller than everyone else much of the time these days sweetly playing his punkin brother to sleep.

There's plenty of irregular nonsense, as is the case with Life.  There's a crazed seagull outside the window right now, for example.  And G is probably not yet asleep, though his sisters are, and he will miss breakfast in the morning if he isn't out soon.  There's the part where we're figuring out the new versions of the parent-child and child-parent relationships - no easy task even when everything else is smooth and lovely, much less with a few irregularities thrown in.

However.  That young man who played for the littlest guy of the bunch also let me know that he's decided against looking for a job right now, though he'd need one to get a phone, which he badly wants.  He's forgoing the job so he can focus on succeeding in school.  He's making plans.  And his sisters aren't far behind.  This is so incredibly awesome.  I know people often report the empty nest thing, and I'll probably have some of that too, later, but oh wow, is this exactly what all the hard work has been for!  I just love that they're in the middle of the progressive circle that takes them ever nearer competent adulthood.

And this week has been great for us all, in different ways.  The teacher who trained under Dr. Suzuki himself captured G's imagination, the one who dances with all thirty-five of her sweet younger kids while they play with violins atop their heads has S smiling like crazy (she loves all her teachers).  E and K were given tiny things to work on that will improve their performance in gigantic ways - much of which carries over to Real Life, too.  Q wants to go home with his Rhythm teacher so he can always have such fun.

So hurray for a week well spent.  For kids who've taken great advantage of the opportunity (and are willing to work and save for the next go round).  And hurray for the bazillion people who've helped with Q and all manner of support roles.  We wouldn't be here without you.  Thank you so very, very much.

In my running around campus and I've collected about three miles per day, huffing and puffing as we go.  This campus is built on a hill, so it's either lots of stairs for me or hauling Q up and down hills to handicap accessible entrances.  I forgot to mention when  posting about the news of Friday (ortho appointment) that Q weighed a little more than 40 lbs.  Hooray!  And so does his chair.  Not hooray!  So when "sprinting" behind him up hills, I'd like a little fanfare.  Or a sparkler.  Or just a bottle of water might be nice.

Sleeping time now.  Yikes, but we're tired.

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.

Tools

The Four Horsemen of the Apocalypse.

Crazy teenagers.

Crazy parents.

Punchy-tired

We are wiped out from the big weekend activities.  Q rode the cars again in the Challenge Day race.  This year the founder, Leo, had added a seat back for the boy to be strapped to.  They used it last weekend in a different city for a kid with similar physical presentation.  It was so fun!  Q had a moose head wraparound neck support, and he grabbed onto the car right away and just rode like he was in charge, man. 

When he wasn't riding, he was having a rest in the van with G (so cute, the pair of them all sprawled out), or even better, helping G or E drive this.  There wasn't a roof on it, and the steering and brakes were located on sticks at the hips of the riders, rather than out in front as handlebars.  He loved, loved, loved it.  I've been thinking about how to get him on the road on a bike, and this would be one awesome option.  There was a bag at the back, strung between the two joined bikes.  It would easily hold most everything Q would need for a day out.  Amazing how much fun he had as soon as he was in motion.  He's definitely a little adrenaline junkie in an uncooperative body. 

We're waiting for the modification piece for his backpack - how cool will that be!?  It's been a few days since I ran - have to get back to that tomorrow.  Since running longer distances and doing so more consistently, plus walking lunges, etc., I can easily tell a difference between last summer and this:  Q is easier to hoist and easier to haul in the pack.  How nifty, right? 

Now to figure out the next bits of life:  G and K got running shoes today, inspired by E's PT successes which correlate mostly to her shoes, though the exercises sure are helpful.  G went parallel parking this afternnon and needs a viola bow and would love to have a new violin bow as well.  The last violin bow he tried and thinks still would fit best was more than $700.  Gulp.  So we'll be praying over this - the viola that came from Goowill and makes such nice sound.  ;o)  The house windows need screens and I need a big, bad, load of dirt to come here, be free, and make friends with the rocks.  Until the dirt tosses the rocks out, on sheer principle.  So there, rocks!  Heh.  I'm afraid I've constructed all kind of scenarios in which the rocks just go poof.  Of course, so far, the best way is to have cousins over and to announce that anyone who plucks a weed or moves a rock will get a penny apiece.  K, of course, is the fastest - I owe her almost $4 so far!  And the other girls each made some money off me too.  Hooray!

The Zyrtec has taken over.  Q's quiet so time to sleep!  XO

Week end

I've been chewing on things this week about how to mold one's family culture, what input is most effective for kids as they grow their wings and look to leave home.  One of the things that seems a constant recurring theme is that I have a lot of friends, some real, some "imaginary", who require a LOT of their children.  Some of these people are thought of as tough, true (like that's a bad thing), but most are thought of as responsible parents.  People who are busy helping their kids to be people the rest of us want to be around.  As opposed to say, children who walk around having tantrums over the silliest of things, or demand that occasions suit them at the cost of others' needs, and more.  I don't know that I have any conclusions on the matter because I'm kinda in the thick of it, here.  I do know for sure that two parents in the same household, a team working together for their kids, whether or not they agree on even as much as fifty percent of how to proceed, is making the process that much easier for those who have it. 

I'm out early in the morning, so shall sign off.  Hope you all have some sweet rest and a very productive time in whatever place or area you most need.

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.

Loopy

Have you heard of this guy?  Wow.  I've always enjoyed the blues, along with many, many other kinds of music, but this kid is something else.  Looks like Joe Bonamassa has been around for awhile.  Who knew?

I'm Zyrtec-ed out.  I've been digging in the rock pile, erm, "garden" and it seems that the wet spring lead to a huge pollen production.  So I'm lightly toasted.  And I have a love/hate relationship with antihistamines - I can't live without 'em under these circumstances, and sorta wish I could just sleep through 'em.  Gah.  A big thank you to the people who have helped knock back the weeds in the rock pile.  I would not have made it this far, ever. 

So I'm going to go sleep now, because without oodles of caffeine, that's what I can do, now.  Or maybe I'll make it to the fifth page of that book.  And tomorrow night will be earlier because it will.  Q has early mornings on Tuesdays, and I'll take advantage of that to catch us all up a bit.  In the meantime, think happy, non-befuddled, lesson planning thoughts for me, will ya?  Thanks.

(And if I'm supposed to be calling you back, I will try to manage that as soon as Q's had breakfast.  And before the next dose of wooly-brains kicks in...)

New Post

This is all I have to say:  I'm going to go read in bed.  For the first time in...  (counting madly on fingers)  ...I give up.  I used to read, but then we moved.  And.  Life...  I don't know.  Obviously, my vocabulary and syntax are suffering from the drought.  New input required.  Back later.

Hope your June weekend is summery and light, involves some sort of pico or chocolate or both, and puts you and all those you hold dear right with each other.  Spit spot. 

XO, all you lovely people.

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.

Home again, home again

Thankfully, sans the proverbial hog.

We drove over to the kids' dad's alma mater for the weekend. The orchestra played for the university church service, and our quintet played violin and piano selections for my grandma and her friends at her new assisted living digs. Well, it's a septet, really, with Q the brave and the dancing cousin. (Q is brave because he tries not to cry when the music stops - his fight with his pouty lower lip is pretty charming.)

My mom came with us and I think we mostly had a rather grand time, despite the difficulties. Milkshakes help the children perk right up, and do a pretty nice job of smoothing things out for the adults too. I can't recall a weekend with more mislaid purses in it. Or one in which the lift for the tailgate suddenly, and I mean poof, gives out. Picture me with bugged out eyes. My dad was researching parts (in his next life he'll be a fab master mechanic), but until I get that fixed, I shan't be taking Q anywhere by myself. Someone has to hold the tailgate door up while another big, strong person hoists the chair into the back.

Never a dull moment, I tell ya. ;oD

I think we're all concerned about my grandma - seems like little bits have disappeared over the last few times we've seen her. Just little losses, but striking when added up. Another really tough visit was with a former professor of mine who is in a rehab facility for the time being. She has a glioma that was initially treated as something else. She, master of words, doesn't sort and use them in the same way anymore. But her smile is just as bright as ever.

And G has his learners permit. I should be bald by the end of the week. No, no! It's not that he's bad. He's fine. Quite good for the experiences he's had. It's just regulation nerve wracking.

Heavens, but I hope this makes sense. So tired! As we were nearing home this evening I wondered how much of these years the kids will remember as "mom's tired years." Time to work on *that.*

Hope you're having some sun, a little rain, and all kinds of genuinely helpful things. Back with more later. (And if you saw the first incarnation of this post, let's just giggle together over it. Snicker.)

Runningform, runningform

I keep hearing things in my head about "maintaining a running form."  I hear this when I'm up too durned late,  when I don't wanna do the dishes or grade the papers, and when I'm actually running.  My friend's brother gave her that phrase to use as she was training for a race.  I'm quite sure it was meant to keep her moving when the training felt like it was dragging her past what she could do.  And so it is with me.  Now I hear those words when I'm pushing up a (wee) hill, making those hip rotators work.  I hear it in those other moments too, and it always surprises me just how much a little positive self-talk can improve things.

I'd like to think that I post at times when I'm not tired, or impatient, or frustrated.  Heh.  Tonight I'm just tired.  But I have runningform, runningform.  And in a little bit, I will be asleep.  In the morning I will have a lovely shower.  I will feed, organize, wash, sing to, entertain, feed again, love on, cajole, practice with, launder for, tend, medicate, and teach these sweet  punkins.  We will discuss, argue, tweak plans, and clean things.  We'll manage our appointments.  And we'll sleep again.  And so the rhythm of the week is begun.

As very tired as I am, there's a blessing to this which continues to amaze me.  I don't know how this works, exactly.  But somehow the energy poured in increases by orders of magnitude when I'm not looking.  Hallelujah, eh?  ('Tis a very good thing - I've managed to open my mouth once again and turn my curiosity into an "opportunity for involvement."  So - here we go.)

Hope you're enjoying a lovely evening.  Here:  some smiles.  XO.

Sticks and stones

This reflects my thoughts, exactly.  I too had thought to be subtle, deft even, on this subject.  I too have discovered that the sidelines aren't an option.  So bizarre, to find oneself in this world.  So bizarre.

Also - I've dithered a bit over whether or not to add a note of "warning" over some of Rob's language.  And I guess you may consider yourself warned, now, if you needed to be.  But truly?  I don't find the verbiage inappropriate in the least. 

Feel free to comment - I'm  interested.

Here!

So much for a timely follow-up to the last post.  Q's been sick and not sleeping.  When I write those kinds of words I wonder what people think.  I get odd response sometimes.  "Oh yeah.  I gave up sleep when my kids were born.  Once you have 'em, they just get up and have nightmares and they need water in the middle of the night..."  I think my polite smile is fairly neutral.  And I try to exit the situation quickly, so as not to have to qualify anything further.  What would I say?  "Yes.  Sometimes Q sleeps through a whole night.  Most of the time he needs to be turned and repositioned at least once, usually up to three times, and there are still, despite meds and bolstering, nights when he sleeps less than four hours."  (Thank God those have been fewer over the last year.)

Do people hear those things and revise their opinions?  I don't think so.  I've been told that "strollers are not allowed in here, ma'am.  You can park it over there."  When I reply that it's a wheelchair... is it even an option for that person not to feel like a worm?  So I'm as quiet as I can be, on this and many other related subjects.

I really am going to write out the recent appointments and etc., but first I have to sleep.  I managed almost nine hours between last Thursday and Saturday nights.  I won't bore you with the bodily fluids report.  But the boy slept better last night and is out now, so I'm going to take serious advantage and pass out, flopped on my bed.

(Many of you have been praying.  Thank you.)

Run, baby, run

Hi.  Figured I'd stop in quick, before April is over.  We're getting snow - in case we forget and think it's spring or something.  Sheesh.  Thinking of the folks in and around tornado alley right now.

I've been running for about a year and a half.  I started with just a few dozen steps at a time, because it was rather chilly out and I have been known to experience exercise induced asthma.  I wish I'd known that's what it was back in seventh grade when I was trying to run track - I felt like a flailing fish, which I don't when I'm breathing through a balaclava or scarf, and working out regularly in the cold.  I don't know how far I ran today, but when I've run on the track, I've gone as far as 2.25 miles, running, then rounded it out to about 3.5 miles including the warm-up and cool-down walks.  Over the last several weeks, I've added in walking lunges, squats, etc., from past PT sessions to further antagonize those muscles.

Based on research surrounding optimal muscle building, I run sometime during the day (heh - there's no way to predict the timing, with working around the kids' schedules), then do the rest of the day's workout after the kids are in bed.  They've done parts of it with me, and it's not like it's bizarrely intense or anything - just more working of those already used muscles.  Then more stretching, because the one thing that scares me most about all this (other than the possibility of blowing out that knee) is being sore or injured and thus unable to adequately maneuver Q.

I'm thrilled that each run seems to allow me to push a little harder.  I suspect that this is almost entirely due to the extra muscle building following the runs.  Today I found that a full twenty-five minute run requires that I push Q up that last rise with both of my, by then, noodly arms - I usually run to one side, alternating arms as one tires.  And then there's the sweat.  Lovely, glorious, sopping sweat.  Pure heathen, aren't I?  Whatever.  I love it.  It's cool.

Random Running Things:
I've run - actually run - through two pairs of shoes, now.  I need to spend some money on a new pair (choke), but have been recycling old pairs I had previously used until the insoles felt too hard, but kept to use as "river shoes."  Ha ha ha.  I'm now basing my use entirely on whether or not the tread is intact.  The Nikes I'm about to toss have busted through at the pinky toes and the front third of the underside is smooth.  And the outermost layer of sole is coming completely off the middle third.  By comparison, the pair of Asics I pulled out of a box two days ago is in fabulous shape - only a little bit of tread loss, not much smoothness.  I should be able to get a couple of months out of 'em, anyway.

I have very mixed but adamant feelings about wind popping up while we're out there.  It means potential chapping for Q's fat little cheeks, so shea butter is a must for him.  It's helpful when it keeps my hair all the way out of my face and cools my wet shirt, but a total (insert favorite cuss word here) pain when it pushes one around.  Rowr.

This running thing has been somewhat intermittent, what with illness, family obligations, scheduling difficulties, and weather all weighing in alternately.  I became discouraged about this time last year and spent the summer getting in only periodic runs/walks/hikes.  Snow made it especially tough to get in a decent run even once a week around parts of November and January.  But each time I started over a little ahead of where I'd started before.

I think Q's chair isn't going to hold up for running much longer.  The frame seems to be torqued so it doesn't drive quite right - shimmying like crazy when I push it from the right side.  The chair itself isn't made anymore, so I don't know what to even think about this item.  This one has nice big wheels and has done nicely even in sand - runs well on the wetter part of the beach.   I don't like the possibility of ending up without adequate running wheels under the boy.

I don't like all the parts of the running experience.  The first couple of minutes especially suck.  As in sucking wind.  The first hill is yucky.  Sometimes I can feel that one knee get suddenly "fluffy."  (cringe)  But by that twenty minute mark it's become easier to just keep going.  And really, how cool is that!?  I'm contemplating longer distances - in part to keep using intervals, which I prefer over the longer runs because I swear I feel my metabolism ratcheting up with each set, and it lasts for hours and hours.

Running is something I can do with my kids that lets all of us be healthier.  Q benefits from the wobbling motion by having to use his wee spinal proprioceptive muscles throughout our runs - and this seems to stay with him for hours after in increased head and trunk control.  Pounding pavement or track increases my VO2 max.  My resting heart rate is now between 58 and 65.  My knee, even while making itself known via need for RICEing, is stronger and less cranky, overall.  I have new thigh muscles, gastrocs, abs.  And running is cheaper than  psychotherapy.  Or bail.

I think I may have found the proverbial running high.  (blush)  Ya think?

Next up:  latest medical and therapy developments for Q.

Dead on

Here:  so I don't have to say it - and have my head explode in the process.

Saturday Night

This has to have been one of the toughest weeks in my parenting experience thus far.  Plowing through testing, school work, practice, shopping, and then handling the complex emotional upset of two of 'em handling friend stuff they've never encountered before.  Sigh.  The hardest part being that I can talk and talk and listen and listen, soothe, rub backs, sing, pray, read, then talk and listen some more, and still just want to take away the pain this is causing them.  I know the long-term useful approach is not for me to make it all better, and they really do have to experience difficult things - this is the first time I've really been accosted by the desire to wrap 'em all in bubble wrap and swaddle them softly.

Some of the children may be a little big for swaddling.

Have I mentioned lately how much I adore my kids?   This evening G and E and I were chatting about Napoleon.  I offered that, depending on who you ask, he was a brilliant man or a despot.  They replied in unison, "Or both."

E has spent much of the last week wallowing in logical fallacies.  Her outbursts have become hilarious.  We don't go anywhere or hear any news without her offering up a shriek of "ad hominem!" and etc.  Love it.

This morning while we were getting ready for church, S was singing made up songs about beavers to Q.  She detailed their habits, protective instincts, habitat, and more, in rhyming couplets (in the style of rock opera).  K had already contributed her vocal and lyrical stylings while I was getting ready.  She walked through the kitchen, musing emphatically to herself: "If I ever have a pet beaver, I'm naming it Justin."  Her head popped up and she looked around.  "What!?  I'll make sure he has all his singing stuff!"  (Snicker - what does one say?)


I have a couple extra punkins here tonight while their parents have some much-deserved alone time.  They all played hard this afternoon and evening and are sacked out now.  I'm sneaking out of here and off to bed before someone decides to change that.

XO.

Good things

Q had a fun week.  In addition to his usual stuff, his Tuesday morning therapies were all cancelled - a big meeting for the therapy place - so he had four mornings of preschool.  He was thrilled to hang with his peeps for an extra day.  Wednesday afternoon, he had a clinic visit with pediatric/special needs dentists in training, and he thought it was pretty spiffy.  He stayed in his chair for the exam and cleaning, only bit the nice lady once, and had a teeny cavity filled (they expect it to sort of heal itself up).  His only regret?  Not getting to play with all the lights and other stuff that were hanging over his head.

Everyone's out, the washer just stopped, the place has been cleaned about as thoroughly as it's likely to be while the kids are these ages, and all's right with the world. 

Three Good Things:
- More running happened this week.  I do not like to run and suck wind, but when I do it more frequently, I love it.  Truly.  It's awesome to feel a little burst of speed up that last hill, to revel in muscle tissue that wasn't there for the last run, to have all kinds of strength that needs stretching.  Love. it.  Interestingly, my knees are okay with it, so far.  Fingers crossed, eyes heavenward.
- This house.  I've been taking inordinate pleasure in cleaning the baseboards, having an organized drawer full of All the Things In the Kitchen that Cut (including knives), and keeping spaces tidied.  The kids seem to be following suit.  Well,  except for their own rooms.  Aherm.
- Friends who drop by and chat.  It's so lovely to have the opportunity to do that, and it's becoming more and more difficult to go anywhere else to just hang out.  Q's needs aren't likely to lessen.  So I'm just grateful for people who make time to just be, you know?

Hope you're looking forward to a lovely weekend, maybe savoring the sun, watching the skeleton trees turn into springtime cotton candy.  XO.

Restless

Q was having a tough time settling down.  Late phone calls.  Ensuing contemplation.  I have such a early morning coming!  (sighdespairsigh)

I other news, let's be praying for each other's families, okay?  I've witnessed some bizarre behaviors lately, and then seen other situations resolving in a fashion that can only be described as high level miracles.  In all of the cases, the kids involved are really benefiting from the steady, calm, predictable behaviors from the grown-ups who are pushing through major discomfort in order to learn new ways to do things. I have such respect for people who do those very hard things in order to achieve better things for themselves and their kids.  It's amazing to watch a process unfold like this.  A bit stunning, as well - I'm a bit gobsmacked when encountering such drastic and visible changes.  (I hear that folks engaged in such grown-up activities are also found to be unusually attractive.  So.  Bonus.)  The other version - people who are so stuck in old patterns, doing things out of a fear-based response, clinging to familiar things which make them feel safe - the situations involving these folks have become so heartrending as to be nearly unbearable to observe.  I cannot imagine the level of difficulty involved in actually living it.

So prayers for families at large are good.

And prayers for the people of Japan, of course.  We've been glad to discover that friends from church who are in Japan are alright, as well as other connected persons.  So much tragedy there, it's hard even to contemplate as an idea, much less absorb as a reality.

Three Good Things:
Everyone here is currently well.
The chocolate pudding I made for supper was delicious.
We ran twice and walked once last week.  (This is a Herculean/Sisyphean thing and my gratitude over having managed to pull it off is rather significant.)

Hope your coming week is lovely and spring-like.  XO.

Crack

So today was an interesting day.  Q had an appointment with a new doc, an endocrinologist.  I had a misunderstanding about childcare, and then there was traffic, parking was a nightmare, and we were late.  When the desk guy came back out to tell me that they couldn't see Q today, I just sort of froze.  They went to get the MA who does the scheduling, so I could reschedule for some time in the next couple of months.

And I just started to cry.  My day had already included several frustrating phone calls, several frustrating kid related issues, a mildly depressing orthopedic note, and not enough sleep - Q needed extra repositioning in the night.

I've never fallen apart in a medical office before, but I learned today that it opens doors rather quickly.  Q and I were immediately shown to an exam room and I was handed a bale of Kleenex.  The nurse came in and spoke softly, and said that the endocrinologist doesn't like to turn people away, so he'd be seeing Q anyway, though it might take some time.

They moved very quickly.  Q had all the vitals, but his BP wouldn't show up - he wanted the tubes and cords and the ensuing waving of his arms kept the machine from getting a good read.  He had a good x-ray of his wee little hand, to look at his bone age (about eight months behind).  And the very nice endocrinologist spent the next forty-five minutes explaining everything from how many bones there should be in his wrist at this age (five, maybe six), versus how many there are (four), to what he's looking for in the bloodwork he ordered.  He showed me the x-ray, and yes, those bones look a little light, despite Q's vitamin D drops.

The bottom line is that there's every reason to expect that Q's pituitary is falling down on the job, and that certain other hormones are a bit off as well.  His pediatrician wants to get a bunch of nutritional panel blood work too, so I'm hoping like everything to roll the endo and PCP draws into just one early morning run to the lab.  Q will return there in three months for the next phase of the discussion.

I didn't connect it at first, but I realized as I waited for the MA to come out that I was standing in the same offices where I sat years ago, now, with a pediatric surgeon to discuss the plan for the baby growing in my belly.  Who does that?  Who has to go sit with a surgeon to look at the options for an as yet unborn child?  Not many people, that's who.  I don't often think about how life here is anything but "normal," but that's exactly it: completely not "normal."  It's really not all glamour and bon-bons, my friends.

And I'm a little fried.

The nurse asked me if I was the only person responsible for all five of these children.  (For a second there, I didn't know what to say.  I mean, holy cow, right?  Who thought this was a good idea?)  I told her that I usually have some kind of back-up, but today was The Day it All Came Apart.  She said, "Yeah,  I thought maybe so.  Seems like you have a lot to keep going and today was just too much."

Maybe so.  I don't know.  I've been fine through the whole "Q will now enter the surgery phase of his life" trend we seem to have going on.  We've done braces with G, umpteen dental, pediatric, and specialist appointments for all five.  We've done a gazillion casting and fitting appointments for splints of various kinds.  We manage about fifteen to twenty loads of laundry a week.  Everyone eats good stuff, the kitchen is clean (don't notice the three cups in the sink, okay?), and things move here (practice, schoolwork, sleep, repeat).  I don't contemplate it because it takes away from the time I need to spend pulling it off, you know?

Anyhoo.

I'm going to stop contemplating now so I can go sleep. 

Three Good Things:
- Apparently, endocrinologists don't so much recommend surgery.  So.  Hooray for that.  And the doc thinks that there's no reason to expect urology to recommend a procedure.  More deeply heartfelt hoorays.
- Fresh, homemade bread, with butter and lavendar honey.
- Smart, funny, kind people who talk to me sometimes.  I heart you.

G'night, all you lovely people. 

Vitamins

Ahhh

I'm so glad it's Friday night.  Crazy week:  snow and wind and crazy cold;  friend with a newly acquired TBI (mild, thank God);  Q was flagging;  slippery roads overwhelmed by very rapidly falling snow;  more medical thinks to think;  weather reminding me of a different place we used to live;  my mom's recouping.

Q seems to have popped back nicely.  It'll be warmer tomorrow and the roads are bare and dry now.  There's lots of good info out there about TBI and said friend is taking appropriate measures.

I am excited to share that Q's PT peeps are looking to nail down another hour every week specifically for power chair training.  Yay!  Tangentially, this brings up a concern of mine:  could we all pray that the gas prices drop and stay down for awhile?  I'm having a heck of a time trying to figure out how to manage the strangely fast-growing expenses.  Food is suddenly significantly more expensive too, and if we're about to be driving more miles...  Well, it brings a little shudder.

Deep breath and on we go, then.

I had another conversation with the pediatrician and we are looking at a referral to urology for a possible procedure.  She's noncommittal about the likelihood of such a thing, but in case youre keeping score at home, we're now up to four surgeries that may need to take place sometime in the next twelve months.  May need to.  I can always freak out later.  For now, I'll get the next appointments scheduled and see what the docs have to say.

A funny for the day.  Because without them, we lose our minds.

Here's hoping that your week-end provides basis for a good week-beginning.  Share some extra hugs around, maybe.  It's been a brutal week for some of the people and we could all use a little extra tenderness, right?

XO.

New blog, good stuff...

Callie's mom is a member of this uneasy club.  What a gorgeous baby girl.

If you haven't read Rob lately, he's totally worth finding too. 

Next up

Q will see a nurse for a skin management protocol on Monday.  He's fine at the moment, but has had abrasions over his vertebrae and scrapes on his hands.  Everyone who works with him is pretty careful, but still.  Good to have the professional input and then a plan.

Meanwhile, I've reserved the right to puke in the backyard at any time, without warning.  What can one say?  I can't think too long about the prospect of multiple procedures, or even one of 'em, without getting ridiculously light-headed.  Not so great.  Still!  It is good to have a plan, no?

Heh, heh, heh.

Aaand it's Friday again!

Q and I traipsed up to his orthopedics appointment this morning while his sibs headed off to violin/viola lessons with the Magnificent Auntie.  I like the orthopedist, though I could (have I mentioned this already?) go the whole rest of my life without hearing another call pager going off.  Twitch.

So here's the deal.

The films show Q's left hip subluxed at 60% or more, and his right moving out more than it was this time last year.  More important is the fact that his hip sockets were more bowl-shaped last year and more saucer-shaped this year.  This is a pretty solid indicator that he'll need to have surgery at some point.  The benefits to going ahead sooner are many.  Kids who don't have surgery until they're in constant pain, usually around 14-15 years of age, are really only candidates for resection of the head of the femur at that point.  People who are ambulatory with typical tone can have resected femurs and continue to walk because they have lifetimes of good muscle built in that area.  People who have atypical tone cannot expect to stand or walk again after a resection.  Period.

There's a significant study out of Australia regarding pain in hip dislocations.  Not all children with dislocated hips have pain, and some surgeons argue against surgery in any cases who do not have constant pain (see above example for why we would not want to let things get that far).  Interestingly, children who attempt to be engaged - verbally, vocally, or otherwise, suffer pain with hip dislocation at the rate of nearly 100%, whereas children who are less able or interested in being socially engaged, do not.  This appears even when other factors are controlled.  The orthopedist indicates that the hypothesis suggests that it has something to do with hardwiring and development, much more than with communication.  Striking info, there.  He says that Q falls firmly into that category and he would expect that Q's having some discomfort now (recent developments seem to indicate this), and will eventually have severe pain if untreated.

The surgery is not an emergency.  There is a window of eighteen months to two years, and Q's scheduled for his next x-ray and ortho consult in early August.  In the meantime, while the orthopedist would certainly not suggest that we look at a Baclofen pump for the purposes of the surgery, but because it's already a consideration, he'd be on board with it as a good next step, which will also provide further post-op tone and pain management opportunities.  PTs, OTs, and Q's rehab doc all concur, so the rehab doc has put in a request for a referral to neurosurgery to discuss intrathecal Baclofen.  One of the benefits to Q having a pump placed for this is that he would be able to take much smaller doses of the Baclofen.  He's currently at the max dose for his weight, 20mgs, 3x/day.  The lumbar test dose (which is exactly as notsimple as it sounds) is a 50mcg push, or bolus, delivered in the space of a few minutes in order to gauge particular effects.  The daily dose via intrathecal delivery is 100mcg, spread out over 24 hours.  The lower dose, delivered directly into his spine, allows it to bypass his liver, which would eventually begin to show toxicity with the high oral dosing.  Also, any residual sleepiness goes away with intrathecal Baclofen.  He hasn't had much of that, but it would be awesome to see him more alert.

Q has built quite a bit of actual muscle in the last year, since beginning Baclofen.  With the tone pushed back a few paces, he can build actual muscle, and he has.  He's long and lean, like his paternal set of genes, but there's definitely real muscle in there and he uses it well.

There's so much more to tell.  The ortho guy is unbelieveably detailed (which makes my busy brain so happy!), and cited the aforementioned compelling study several times as being the best current source of info on kids with spasticity and hip dysplasia.  I'm sure I'm leaving out almost as much as I put in, so pardon me if I revisit to add details over the next couple of days.  Another decent source of info.

I'm exhausted.  How 'bout you?  Hoping sweet things for you this weekend.  Next up for Master Q: endocrinology and dental clinic.

"Kiss those babies".  -Dy

Progress

Q has had an interesting run with professionals lately.  Tuesday he saw his pediatrician - all is well, though my definition for such things may not be the same as that of the general population.  He hasn't used the nebulizer this season (fingers crossed), his skin is unbroken (except for the self-inflicted scrapes and bite marks on his hands), and he's happy.  No small thing, that.

Today his new caseworker from the Department for Developmental Disabilities spent three hours here, doing the initial intake interview.  How much help does he need dressing?  Managing grooming?  How about feeding?  In learning and play activities?  I think the more effective question would be: what doesn't he need help with?  It would certainly have made the whole process shorter.  Heh.  I have no idea what the expectation should be for the outcome with this evaluation.  The caseworker will return tomorrow with the completed plan so we can have the option for care coverage for the month of March.  As of today, the estimate for care hours is 86.

I have two reactions to this.  First - thank heavens that there's an option for this.  At all.  I may choose to have someone spend the night to turn Q and reposition him, should he awake, between the hours of ten and six once or twice a month so I can sleep.  I can think of other very useful applications for this as well.  This poses such a huge blessing that contemplating it makes me a little light-headed.  I'd be giddy if I were less tired.  Second - so, um, let me get this straight.  It takes eighty-six hours a month to care for Quinn?  What?  No comprende.  Eighty-six hours?  In what context would this be true?

The caseworker is a very nice man.  He spoke of his own experience helping to care for his cousin who had severe and complicated CP.  He said that I'm doing an excellent job (blush) with a very time intensive and exhausting situation.  He found Q's smile engaging, touching, beautiful.  He considers the result of my efforts and my knowledge of Q's specifics, as well as the human body generally, to be remarkable.  He's spending some time tomorrow morning going over the notes to fine-tune Q's profile and will return the final results to me quickly, so that we can get this moving, as I mentioned.

Eighty-six hours.  I'm guessing that this means that an algorithm has decided that a typical five year old requires eighty-six hours less care than Q?  When the nice man asked about the biggest needs for Q, I told him that our challenges here right now center around the fact that Q, himself, is a full-time endeavour.  Add in the medical and therapy management and administrative issues, plus his sibs, and suddenly there's more to do in a week than I can realistically complete.  For example, we still don't have window coverings up.  Deep breath.

And yet.  (You knew I had one of these, didn't you?)

The kitchen is pretty darn clean, though a crevice tool would be welcome under the edge of the stove.  The whole house was vacuumed yesterday, including many of the baseboards.  The kids are excited about their Greek temple models.  Everyone is making some kind of measurable progress in learning.  The bathrooms are pretty darn clean, though I suspect G's shower could use some scrubbing.  The ubiquitous boxes are becoming less so.  There are pictures on some walls, and slowly, steadily, more things are finding their homes in shelves.

Q has an orthopedics appointment at nine tomorrow.  Both his therapy center and school PTs as well as his OT would like to see the lumbar testing and possible placement of the Baclofen pump before any potential surgery.  Management of both pain and spastic tone would be much easier post-op with the pump, resulting in a vastly better experience for him.  (Head between the knees... hating the prospect of all this...)  I'll have more info tomorrow about all kinds of stuff.  Knowledge is power.  Tra la.

Three Good Things:
My shower squeegees.  Such effective little tools, and they make less work for those cleaning the showers.  Win!
Things I've learned over the years from certain people, some of whom you might not suspect I'd include in a gratitude list.  Thanks to those people, I have encyclopedic level stuff in my head, and it ends up being useful in all kinds of situations.
My kids, the punkinheads.  They're smile-inducing, work-creating, attention-deserving, organizationally-motivating, daily challenges, in all the right ways.  They prod me onward, require that I be brutally and painfully honest with myself, and they bless me incomparably.  All at the same time.

More soon.  XO.

Slide in

Aaaand it's Friday night.  Phew!

I have only a few things on the floor in the living room, after trying to organize all of  Q's stuff into a garage sale bookcase - fifteen bucks for oak with deep shelves.  Cool, huh?  The remaining items may not make the cut.  The parts still stymieing me are the "extra" bits for his chair and walker, the spare pads and such.  Some can go into a box on top of the shelves, others may need to live in his closet.  Closet.  Swoon.

Have we discussed my favorite things about this house?  First, the closet which Q is making good use of.  Apparently it's a "his" closet, being off the master bedroom and all.  Heh.  Most of his supplies are in there and I'm so glad to have it.  Second, the main floor bath and bedroom.  Modifications needed later, but if he isn't able to negotiate stairs at all, or a lift plus a few steps cannot be managed for him in the future, he still has his own accessible bedroom (which was maybe supposed to be a massage room, but unless you call me, when in the world would I manage to pull that off?  The word "busy" comes to mind.).  Third, the front steps are at precisely the right height for Q's chair to be lifted in and out without so much back strain.  Fourth, the hallways are wide, so we can get the chair around inside.  Fifth, the bar/counter with five stools all lined up - working on the adjustable base idea for Q so he could join us there.  Sixth, I have three closets here not associated with anyone's bedroom.  The entry closet, the hall closet (near the garage entry), and the linen closet upstairs.  The storage and the wall space (unpacked the paintings) just blow my mind.  Now to get curtains on any of the rooms besides my bathroom window... There's a great view of the sunrise over the mountains, but it is awfully nice to shower in the light.  Same view through my bedroom window - awesome thing, to keep watching sunrises over the snow and trees.  Wow.

Q has an appointment with ortho next week.  It was then or wait until late March or late May, so we're going with this option.  I'm waiting to hear back about dentistry, which I'll tell more about when I can hold my eyes open.  Yikes!

Hope your pre heart day weekend goes well. Give some hugs and get some, too.

XO.

Q, redefined

So about those medical appointments.  Q saw a rehab doc this week at the Children's hospital.  She watched him walk and was quite engaging with him, and he with her.  She sent us off for x-rays and then sat down to discuss the findings. 

Last year this time, Q's left femur was about fifty percent subluxed, or "out" of the hip socket.  This year it's about 2/3 out.  The plan for now is to get consults scheduled with ortho and neuro-ophtho and think about when to have surgery.  If it's indicated (and it surely will be at some point), the surgeons may be willing to do both hip and eye corrections at the same time, in part because I'm trying to be mindful of Q's lifetime chances of needing general anesthesia; it's just a good idea to manage these things if one has that option.  However, the hip surgery is longer and so that may rule out any other simultaneous procedures.

Q is on a four day titrating plan for Baclofen - going up to the max dose for him at this weight and height: 20mg, 3x/day.  We'll talk in a couple of weeks, his newest doc and I, and she may at that time opt to add a tiny dose of a benzodiazepine during the day to hit the receptors that the Baclofen does not.  Things that would indicate he's not doing well on the new dosing of Baclofen: increased sleepiness (beyond the usual 48 hours from a newly increased amount), increased drooling, any sort of sustained decline in function.  It's pretty typical for him to have had that initial sleepiness, I haven't noticed any change in drooling with these meds adjustments, and any change in function has disappeared within a couple of days, as he wakes up and goes on to build more muscles as the inappropriate tone subsides.

Good things I know now that I didn't know before: he's 37 lbs and 42 inches.  He's growing!  Yay!!  This new doc is not opposed to placing a Baclofen pump sooner rather than later - hopefully skipping past the potential liver toxicity which can be seen in kids who've been on their maximum dosing for years.  She also thinks he needs to have AAC as soon as it can be managed and a wheelchair he can drive, baby!  (I'll be needing the remote cut-off switch for when he decides he can safely drive himself right up into the mountains, thanks.) 

AAC:  Q has been on a wait list for more than a year.  I just discovered this.  Since he already has speech therapy (for feeding) he had to go through the whole wait list thing again.  In the meantime, thanks to all you kind and lovely people (you know who you are), he has quite the iPad cache of games and goodies.  His fave, so far?  The free "Yes/No" app - he can answer yes/no questions easily and loves it so much that we're about crazy from it.  In a good way.  You know.

Motorized chair:  We've had a "starter" version - ancient car seat with motor and wheels plus a button for him to push to make the chair go.  The incredible noise, which probably violates city ordinances, has been, how to say?  Offputting.  For Q and for the rest of us.  The very good news - his PT thinks he may be big enough now for some of the demo options they have on site.  Or I hope they have them on site.

More good news today:  Q has a caseworker through the Department of Developmental Disabilities!  And the guy is coming out to the house on the seventeenth to do an eval and get the ball rolling for paid care hours!  YAY!!!  And also?  It has only just occurred to me that now I need to come up with people to actually be certified and to provide the care.  Preferably by March 1.  Another action item for the list, then.

I'm not so much enjoying the prospect of Q having this surgery.  The cutting and stitching up and recovery and more meds and pain and casting and general discomfort and wow, could we skip this and I'd be fine.  However.  If the rehab doc is correct, and I believe she is, changing that angle between the trochanters and heads of the femurs plus good management of tone should equal a real change in the trajectory for Q.  He will likely be far more comfortable in nearly any position, he should stand straighter (a very real issue for him as he's trying to work while upright), and most importantly, it removes much of the worries going forward that one often has about kids who are experiencing such a painful presentation - including joint and bone integrity.  Will this help him walk?  In so far as he's already able, yes.  (Try walking with your knees turned inward and clonking each other.)  But the goals for Q mean that currently his mobility and any walking/standing/sitting issues are separate.  He'll need his independence, as much as he can gain, and that will be with motorized wheels.  If he can eventually step up a couple of steps at a time, with help, and assist in transfers, I will be ecstatic.  Truly.  These things would be huge.  Would I like for him to walk?  You betcha!  And if he does, great!  But I'm not tied to that as a marker for his success.  Q's success will come out of the fact that he's a hard worker with a great smile and an even better attitude.  All that he brings to the table coupled with excellent therapists who are committed to figuring out how to get him out so he can play, talk, tell us what he wants us to know about him, will define how far he can go. The sky's the limit.

I know I've forgotten a thousand things, so I'll pop back and issue addendums when I can.  I'm headed for sleep - such an utterly exhausting week.  I've pushed off considering the logistics of all this for now (spika cast, transporting kid in cast, etc.).  Plenty of time to attend to that when I've got more info.  No sense borrowing trouble when it's already quite interesting, living here.

I so hope you're looking forward to a lovely weekend, all.  More apologies from me re: being so ding-donged out of touch.  I'm even sorrier that it appears there's no end in sight.  Hey - I'm issuing a standing invitation to come help me scrub down Q's equipment.  I could seriously use the extra hands here and we can chat!  Whaddya say?

XO, prayers, and peace.

Yin, yang, whatever...

January 2011 is on it's way out.  Hooray!  And also, well.  Not hooray.

Sometimes I look around and am pleasantly surprised that things are moving along at a good clip.  And then I just as often have one of those lurching feelings in my gut - the kids are growing so fast.  It's hard to imagine, but they'll each be heading out in the next few years, making their very own marks on the big world. As conflicted as I feel about it - excitement for them and their coming achievements/sadness at the anticipation of them heading out and away - how about all those parents not fortunate enough to be so enmeshed with their young kids?  Or even teenagers, even with all the angst and eye rolling?

I'm pretty blessed to have been this kind of mom.  I hope the kids feel the same (grin).  Q's stuff has added a whole other layer of exhaustion, but it's good to know there too that he's making progress and that he's happy.  That is such a big deal.  And who could ask for more, for any of their kids?

I had planned an early night tonight.  Early is defined a little differently here than a lot of places, I think.  I was pretty much set to be out well before midnight, but no go.  So I'm just going to take a second for a detour, since we're here.  I've thought about this lately, based on several experiences with families dealing with developmental disabilities and other special circumstances.  I don't know if there's any way to describe how tired I am a lot of the time.  Most moms of kids with special health care needs are constantly too close to collapse, and that's even with pretty significant help from a spouse.  If I try to describe how tired I am, will everyone I know go on to spend all our (potential) face time, such as it is, watching to see if I'm just too fatigued?  If resources of a bazillion different types are stretched thin around here and I give that issue "airtime" how am I helping anything?

For example:  We could use a funding resource.  Q needs more and more things that aren't covered by insurance.  Some of the other kids need things that aren't covered by insurance.  I need to set up a trust for Q to help with this, but what about his sibs?  (At this point I allow myself a few seconds of a nice internal scream...)  And so I will set this up, somehow, and it will happen, and I won't talk too much about it because I am so aware that what we put out there changes everything - how we're thought of by ourselves and others, the opportunities that present themselves, even our body chemistry, etc.  The Butterfly Effect: change one small thing, and it's all different.  How do we determine where to draw the line with this?

Life here is so incredibly, legitimately good.  It is magnificent because we have those "small" things - K, muttering sarcastically, wishing an ancient ruler good luck in his desire to rule the world.  S making her pronouncements all the live long day and then leaving love notes after she's thoroughly worn us out.  Q cracking us up with his giggles and guffaws while he successfully pushes a light-up toy around.  G being so kind with Q that he makes more mamas than just his own cry.  Sniff.  E, creating culinary delights, organizing everyone and everything, and driving us only the teeniest bit crazy with the current obsession - ancient Greece (we're building temples next week, thanks - the girl is persuasive!).

It is so good that it compels me to make sure that the crazy-difficult and inexplicable bits don't take the day.  They can have part of it.  I may gritch about chunks of misery, and I certainly do not fault those who have rather more of that going on in their lives than anything else.  I'm choosing to lead with the awesome stuff the kids do and the blessings we experience with startling regularity.

But.  It doesn't mean that there isn't enormous inner conflict.  Or pain.  Or even exhaustion.  This week we've had all those and vomit, so I think I'm eligible for a door prize, which looks suspiciously like...  (drum roll please) more medical appointments in the coming weeks.

And the kids still read, write, do maths, make cool stuff, and amaze me always.  Sometimes friends call or drop by (thank you!), and we have that space for revelry, even though there's not much reverie lately.  While so much of this picture may not technically be what I signed up for, it is certainly as much as anyone can hope for.  Even with the not early nights.  Even with disappointment, worry, heartbreak.  I am blessed.

I think I'm going to attempt sleep.  I was so hoping to be asleep earlier.  I will cry if I think about it, so I won't.  It was past two before I was out Friday morning, with an early day Friday for Q, and now the kids have rehearsal after church and then an evening gathering for their group, too.  Better living through caffeine, people.  Come on over, I'll share.  After sunrise.  Maybe Sunday.  Who knows - we can shoot for reverie.

XO.

Another week done

Hi.  Q slept exceptionally badly Friday night.  He went down uneventfully, but was up and squawky by about 2:30.  S joined us shortly after that and we were all fried by sunrise.  I do not know how, but we did manage to get dressed and get to church.  The sermon was so good (David being a man after God's heart, though he was far from perfect), the kids had orchestra practice, I handed off boxes for a person moving due to illness, and we came home.  Q kind of gritched all day.  He'd have been ever so much happier if he'd have just had a nap, but he's stubborn (snort - resemble his familyy much?) and wanted to be awake.

I'm up now because I have a heavy heart for some friends who are suffering.  Life has delivered extraordinary levels of stress to several individual families in the last several weeks.  Some are filing for divorce, some trying to prevent it, others facing terminal diagnoses plus wretched pain.  I wish that we could all take a break from the pressures of the everyday.  Perhaps if we each had a small shift, we could see the awfulness for what it is:  fear and exhaustion.  Those things shouldn't be allowed to take the day.  We should have good pain meds to go along with hospice, ordinary kindnesses to help us ease through otherwise difficult relationship issues, and restorative tenderness to keep us from ever approaching the brink to begin with.

I've been chatting with the kids lately about what it means to "suffer well" - that is, to do the best we can, or better than we suspected we could have, with that inevitable rain which comes our way.  It isn't that we should deny suffering or ignore it when it's making us miserable.  It's that we get more say than we think we do in how we survive or thrive in tragedy.  After leaving church today, I was thinking about what comprises happiness.  My conclusion is this:  one must possess metaphorical tools with which to handle difficult, painful, and even joyous events; one must make good choices; and one must possess good brain chemistry.  Beyond those things, a healthy balance between internal and external locuses of control allows us to take responsibility for our share (taking more than our share is better) of the blame when or if something goes wrong.  Hopefully then, people can take their tools, their good choices, a balanced locus of control, and do something magnifique with it.  Like hold their family together.  Like manage to suffer well through end-stage illness, grace and dignity intact.

We're not so special that we get to avoid the pain life so often offers.  But we are special enough to marshal our resources and manage what we must, grace and dignity intact.

I should send a shout out to all those who aren't hearing from me or anyone else at this house.  I'm not calling anyone these days.  Unless it's a matter of scheduling I'm not picking up the phone.  I don't go anywhere but church, therapies, medical appointments, groceries, etc.  I'm missing some peeps!  Wah!  So:  Hey!  Hope y'all are well!  I would love to be catching up and hanging out, at all.  But some of this has to ease, right?  I have a round of dentist and medical stuff to attend to and then it's just regulation craziness.  Maybe we can manage something by the time the daffodils are coming up?  Call me, people!  We've already established that I'm not managing to reach out, so call and we'll plan something.  Okay?  'S okay.  A'right?  S'a'right.  Okay good.

Love you all, and thanks for the sweet comments of late.  I'm finally winding down, so fingers crossed and eyes heavenward, and I'll come chat some more when I can be awake.  Smooch!

Howdy

Long time no write.

Q is a busy boy in this new year - riding the bus to preschool three mornings a week, using his big boy bed, sleeping a little earlier at night.  The bigger kids spent two and a half weeks with their dad and are back now.  We're almost moved in.  Does this process ever really end?  I have three or four large boxes full of stuff waiting for a cul-de-sac sale, probably in June.  I expect that number to rise significantly. 

It's been pretty weird, getting into the kitchen stuff.  I've been scrubbing a lot as I unpack.  I'd forgotten just how sick I was when pregnant with Q, and just how incapacitated.  So it's been strange, getting into stuff from a former life.  Very Twilight Zone - I'm not nearly as much that person now as I would have imagined myself to be.  And yet, I'm more "her" than I thought I'd ever be.  I don't know how to say it better than that, but there it is.

So I'm sitting here at the bar/counter, with papers to the side of this, E's ancient Dell laptop.  My little stack contains paperwork to sign, some 20% off coupons (wishful thinking - we shan't be shopping anytime soon), Q's triangle (for Christmas, part of his new percussion set) a glue stick, iTunes card (Q's), pencil, HOA info, and a little yellow pad, on which is scribbled:  Tenderness is greater proof of love than the most passionate of vows. - Marlene Dietrich (shamelessly lifted from a friend).

On the fridge there are photos of smiling babies, the dishwasher is full of clean dishes, airdrying, there are scones from Grandma and fruit on the counter for breakfast.  There's medicine and handwashed dishes, now dry, awaiting a return to their respective places.  A small fox wearing My Generation doll workout shoes is perched against a package of Q's wipes.  I see that S left the pickles out, silly goose.  There's fresh basil growing next to the sink (thanks, mom), and towels to take to the laundry.

The living room floor has a blanket for Q and Lincoln Logs - which all the kids played with all week long.  There are stacks of Q's equipment and toys along the walls - still working out what to do with all of this.  Some things are tough to organize so they're quickly accessible and yet stored attractively, you know?  More work to do there.  The violins are perched next to the piano and the music stand holds court mid-room.  Q's strollerchair waits for him for breakfast time, and his little adjustable table sits patiently, ready for the next onslaught of paint or marker.

It's quiet now, save for the last kid trailing slowly to bed, having spent quality time with a screwdriver, trying to figure out batteries for the solar desk lamp.

It's a good house.  They're good kids, and much-loved.  I am blessed.

I'd best be off - pickles to put away and dishes to manage, you know.  Hoping good things for you and yours, especially amidst the chaos we've all had this week.  Here's to healing, and to Life:  L'chaim.