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.