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"We are what we repeatedly do. Excellence, then, is not an act, but a habit." ~Aristotle

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Saturday, May 28, 2011

Slow and Steady

Thanks to my husband,  I have an excuse to feature a turtle in my blog.


Clearly, by the dearth of updates and the predominance of "Fun Facts" here, we've been busy.  As usual, I am remiss.  But I'm okay with that, which means you need to be, too.

Here's how life looks around here:

People tell me how good Ian looks, "even since the last time [they] saw him."  And I have no doubt they are correct in their assessment; unfortunately, the tiny, TINY changes that happen every day don't always strike me as update material ... and then I realize weeks have passed and not only is Ian able to eat salad, he is able to WALK TO THE SALAD BAR, FILL A PLATE, AND RETURN TO THE TABLE WITHOUT SPILLING.   He also (shhh, don't tell Ingrid the Physical Therapist) walked up the stairs on his own, without an escort, to give me a kiss on the cheek one morning. *beam*

So, in a nutshell, that's how far he's progressed.

It feels "negative and crabby" to list for you the deficiencies instead of the successes, but unfortunately, it's much easier to assume you know "Ian Normal" and then illustrate the "Still Not Normal Parts."  So here are a few Not-Normal's:

1.  Ian's voice sounds funny.  He sounds like a cross between the typical voice a comedian would use for Stupid Drunk Guy and a tired, pubescent boy working on that inevitable voice change.  For me, this is the hardest thing to deal with; it's half funny (as in laughing AT him), half incredibly annoying.  If he slows his speech down so as to annunciate, I get impatient, and when he goes quickly he slurs, and I get irritated. * And then I feel guilty for feeling either of those things.  Rinse, repeat.

2.  His "stupid right hand" is "not stupid cooperating."  I can't quite tell how much feeling there is in the hand itself, but I can tell you that when we ride in the car, his arm involuntarily flops itself into his lap when we round a corner.  When he gets into bed, if he's not careful, he'll be sitting on his hand, completely unaware, until he attempts to shift his weight and is unable to move his shoulder properly.  When he pulls up his pants, he frequently steps away with his right thumb still hooked into the waistband (again, unaware).  He's able to use the hand, but not for, say, holding a glass; more like shoving open a door.  My best sense is that his hand feels "asleep" -- the numb kind, not the tingly-painful kind.

3.  Have you ever played "Light as a Feather" or the "Doorway Game?"  Confused?  Go to a doorway in your home where you can reach both sides of a door frame while standing in the opening.  Put your hands, palm sides TOWARD you, on each side of the frame and push as hard as you can, without pain, for about one minute.  Then step out from the doorway and completely relax your arms ... the result is what happens to Ian's right arm upon rising from a seated position.  I'm doing penance now for all the times in my youth that I (hey, if you're my age, you did this, too), in complete political incorrectness, would whack my chest with my wrist and floppy hand and make some kind of guttural noise in response to someone ELSE'S ineptitude, thus implying that he or she was "retarded."*

4.  His eyes still do their merry dance.  Rotary nystagmus:  It's as if the pupils are in constant dj-record-scratch mode. (see note below)  This makes it incredibly difficult to read and exhausting to keep his eyes open at all, really.  For an avid reader with limited physical mobility, this has got to be the most aggravating  symptom!



That's Nina, the black lab, and Astro, the brain cell.  Thanks, JiMaize and Steele's!

There are, however, Positives:

1.  The aforementioned salad-bar excursion.

2.  We met with the brain surgeon and he was pleased with Ian's progress.  He said he anticipates more improvement in the coming months;.  He was purposely vague on what that looks like, but there is also little-to-no precedent here; Ian is, yet again, the exception to the rule and the poster child for this particular brain anomaly.  I wish he'd choose something else to show off about.

3.  He has been spending quite a bit of time in his wheelchair on the front porch.  It's nice to have him out of the bed! even if he's not "up and about." (We still have his hospital bed in the parlor).

4.  We are pleased with all his home-care therapists.  We are now done being seen by the nurse but continue with speech, physical and occupational therapy.  Ingrid has him doing leg lifts with weights attached, Jane Fonda style; Jessie has him reading articles about stinkbugs and the Pirates (insert disparaging joke here) to practice diction, breath support, etc; Melissa has him working on dexterity and tossing a ball back and forth with the kiddos.

5.  He no longer teeters into his wheelchair to get himself to the bathroom -- he walks there and back with little difficulty (provided we've remembered to keep his path clear).

6.  He still has his PEG tube, but anticipates having that removed mid-June.  We haven't used it in weeks.

7.  We have shared many laughs - none are translatable here but are more a conglomeration of all the inside jokes and verbal ballet in which we love to engage.  I so missed these little connections over the past few months!  Except for the occasional frustration on his part, irritation on my part, and the to-be-expected-stress-induced argument and reconciliation, we are cheerful and do our thing and allow God's grace to uplift and guide us.

The kids are handling things well.  They are also alternately a source of frustration and great amusement, as children should be.  Ezra asks every day upon rising, "Who am I gonna hang out with today?" and is quite disappointed when the answer is, "Mommy and Daddy.  You LIVE here and we LOVE you;" apparently we're not NEARLY as much fun as Ben, Tyler, Paul, Ryan, Evan, Sam, Max, Isaac, and Micah!

So, this is life as normal around here.  As always, we covet prayers and appreciate the consideration, assistance and love we receive from all of you.  I'm beginning to feel sheepish about accepting meals, now that I'm home and we're on a mostly-regular schedule.  That may change when we switch to out-patient therapy ... who knows.  The new normal changes on a semi-daily basis!



*Recall that this blog is entitled "No Sugar."  I'm not proud of these items, but keeping them hidden denies you insight and me catharsis.  Just "keepin' it real," as it were.

NOTE:  If you would like more of an explanation, go here.  If you haven't seen Ian in person, you can view an example here:  http://www.oft.gu.se/webdiagnos/EVL/EVL.html   Click on "Dissociated Nystagmus" and then "Dissociated Rotary Nystagmus  #177" (last one).  Go back and click on "Conjugated Nystagmus" and then "Rotary Nystagmus #162 (last one)"  This last example is probably the most accurate, but do make the picture full screen because it seems quite subtle otherwise.

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