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.

Fun Fact

The term honeymoon is derived from the Babylonians, who declared mead, a honey-flavored wine, the official wedding drink, stipulating that the bride's parents be required to keep the groom supplied with the drink for the month following the wedding.

Fun Fact

MAFIA is an acronym for Morte Alla Francia Italia Anela, or "Death to the French is Italy's Cry."

Fun Fact

The Bible is the number one shoplifted book in America.

Fun Fact

Dr. Seuss pronounced his name so it would rhyme with rejoice. 

HI THERE!

It's 6 am, Monday morning, and as I write this post, Ian is at the local coffee shop, in a Bible study with several of his church/town guys.  God is good!

I apologize again for being remiss in writing.  If I thought the days of back-and-forth hospital trips were busy, they had nothing on our transition home -- especially those first few days.

It's difficult to be a nursemaid.  It's mentally challenging to give your 33-year-old husband a shower.  But we persevered.  After a few days we settled into a routine and things have gotten busier and easier all around.

Our first outing after homecoming was Opening Day at the baseball field.

that's Audrey, the giant, waving her glove ...

Mrs. Happy and Mr. Grumpypants, who refused to participate in the day.

Between introducing all the teams and throwing out the first pitch, military veterans were honored.  We wheeled out onto the field and Ian was able to stand for the National Anthem.

The day left him quite exhausted.  He came home and slept.  But it was a good day in the fresh air.

The next few days contained initial visits from the home health nurse, physical therapist, occupational therapist, and speech therapist, as well as friends and family.  I scurried about preparing his various medications and meals he could manage to consume.  I injected his meds and water by his stomach feeding tube with a syringe, since swallowing was still a bit of an issue.

Headaches and lethargy abounded.  His eyes still jiggle and swirl, making reading impossible and television a not-so-passive activity.  But slowly, we have made some progress:

• He is able to tolerate more "awake time."
• That horrid, hospital cough is gone.  The only coughing we do follows a misplaced mouthful of food.
• Showers require a trip up our giant, old staircase ... we've navigated it quite well several times.  
• Thin liquids, while still a potential hazard, are not impossible.
• He is eating like a champ; yesterday we met my folks at Cricksters for (just Ian) coleslaw, chili, a pulled pork sandwich (without the bun), fries and a milkshake.  (I had a salad).  ---->
• I think we're done with the feeding tube, so that can come out soon, meaning ZERO wires.  Whew.
• The headaches have lessened in intensity and frequency --  If you saw the dance his eyes do constantly, you'd wonder why he doesn't have a CONSTANT headache!
• While we still have a hospital bed in the parlor, I would call it nearly unnecessary at this point; he sleeps horizontally, and is able to rise from a prone position.  The benefit of having it is that when he is completely exhausted from therapy, he has a closer locale to recoup than our bed at the top of the aforementioned stairs.

The miscellany:  We have a therapist here nearly every day.  Ian gets stronger with every session.  His word-finding abilities have, to my ears, completely returned.  His right hand still doesn't cooperate, so typing, driving, etc ... are not in the very near future.  That's not to say they aren't out there -- just not as close as, say, sleeping in our bed and eating a steak (not at the same time! gah!).

He sounds funny; his tongue is wonky and his voice is different ... sometimes his lips don't form the words crisply.  He doesn't stumble when he walks, but he still needs assistance (no matter what he tells you!). He is able, however, to brush his teeth, use the facilities, take his pills, pull himself along the floor in his wheelchair with his feet.  

Ok, so Monday isn't the weekend, when I promised to have an update written.  And I feel like this post is not adequately describing his situation and progress.  So bear with me, ask questions, and I will try to flesh out the Maize Family Picture as best I can.  

Until the next entry - God bless you all for your time, money, efforts, prayers, concern, loyalty.  It means the world to us (Ian's just beginning to learn of the kindnesses done for us these past few months, and he's overwhelmed).   I am simultaneously humbled by and proud of the generosity of our supporters.

Fun Fact

Tommy James got the inspiration to write his number-one hit "Mony Mony" while he was in a New York hotel looking at the Mutual of New York building's neon sign flashing repeatedly: M-O-N-Y.