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.