Friday, June 17, 2011


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.

1 comment:

Carolyn said...

Rollercoasters ... I think the plus side is that it indicates that the day went somewhere. Better them than 'we're still waiting to hear.' I think.

Thanks for the update! Wish we lived closer so we could meet :)