Thursday, November 10, 2011

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. 

1 comment:

Carolyn said...

May God grant wisdom as you weigh the surgeries. They can be tough things to choose. Hugs!