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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, December 31, 2011

Saturday, December 17, 2011

Fun Fact

NERF, the popular foam children's toy company, does't actually stand for anything. 

Saturday, December 10, 2011

Fun Fact

Snow angels originated from medieval Jewish mystics who practiced rolling in the snow to purge themselves of evil urges.

Saturday, December 3, 2011

Fun Fact

In Victorian times, there was an intense fear of being buried alive.  So when someone died, a small hole was dug from the casket to the surface, then a string was tied around the dead person's finger, which was the attached to a small but loud bell hung on the surface of the grave.  If someone was buried alive, they could ring the bell and whoever was on duty would go and dig them up.  Someone was on duty twenty-four hours a day -- hence the "graveyard shift."

Monday, November 28, 2011

Reading Challenge 2012

For my own edification: time to whittle down that TBR pile!  Join me here! I'm tackling Mt. Vancouver! (25)

Saturday, November 26, 2011

Fun Fact

Oliver Cromwell was hanged and decapitated two years after his death.

Saturday, November 19, 2011

Fun Fact

The Chinese ideogram for trouble depicts two women living under one roof.

Monday, November 7, 2011

Falling into Normal

Look how long it's been since I've posted a REAL post! I can always tell by the string of random "Fun Facts" how many weeks have gone by.

First off, Ian just returned from his tri-monthly MRI/review in Bethesda and all is clear. He said they weren't too thrilled with the idea of him driving (at least solo!) but other than that, they're happy.  And he is, in fact, driving (to therapy, around town, as far as Irwin the other day...).  Also, he has taken on some part-time work projects; he sequesters himself in the basement with phones and computers and does logistics! Woohoo!

A lot of things have gone on lately, although none of much import to anyone but family. We got a new car (for me) (which is not actually NEW, although it does look it. It's a sweet ride.) The Impala was starting to cry and it was going to take a $2000 tissue to sop the tears, so off he went. Sad, but necessary.

Ezra turned 5 and had an Angry Birds party. The kids had a fabulous (albeit cold and damp) Halloween as Spider Man and Wonder Woman.

One of the most commented upon non-medical issue-related facebook posts: I painted an upholstered chair. Shock and awe abound ... I plan to post on that soon.

THREE couples-friends of ours are expecting babies/kiddos via adoption, and I'm so excited I can hardly stand it. Another friend who fought a hard battle has been blessed by her own little one as well.


It's FALL!  I love it so. This is probably the last week of leaves on the trees, but they are making a vibrant carpet around town. And I plead with you, dear reader:  RESPECT THE TURKEY and stop with the Christmas decorations/music/tree sweaters already! Yeesh. It's pumpkin and cider time, not hot chocolate and candy cane time!

Saturday, November 5, 2011

Fun Fact

In 1976, a Los Angeles secretary named Jannene Swift officially married a fifty-pound rock.  The ceremony was witnessed by more than twenty people.

Saturday, October 29, 2011

Saturday, October 22, 2011

Fun Fact

In Kentucky, it is illegal to carry ice cream in your back pocket.

Saturday, October 15, 2011

Saturday, October 8, 2011

Fun Fact

The first coins issued by authority of the United States government were minted in 1787.  These pennies were inscribed with the plainspoken motto, "Mind your own business."

Saturday, October 1, 2011

Fun Fact

For a deck of cards to be mixed up enough to play with properly, it should be shuffled at least seven times.  

Wednesday, September 21, 2011

Customer Service Fails (and Wins)

Store #1:  "Can I help you?" the minute we enter, interrupting my conversation with Audrey. I finish my sentence. "Can I help you," repeated, this time with more urgency.

"No, just looking."

"We're closing at 4."  It's 3:50.

"Ok."

Store #2:  Walk into TINY store.  Not greeted, or acknowledged. Employee on the phone. Ok, fine - something important. Continue to browse, having actually come in to potentially treat myself to an item of overpriced goods. Daughter and I peruse the jewelry, fighting with a display that stubbornly insists on falling over. Minutes pass... apparently there is an issue with the credit card machine and the woman is desperately trying to iron things out. Unfortunately for her, that means stepping outside several times, because the reception in all the stores on our main street is terrible. On no pass is our presence acknowledged. (Did I mention how small this place is?)

Crisis averted. I notice that a ring is missing from a display, price tag beside it ... potentially bad news. I take it to the employee.

"I actually noticed that earlier," she says.

I ask about a specific type of item. "Oh, they're all over," she says. I feel very "Julia-Roberts-in-the-boutique" a la Pretty Woman.

Store #3: I am greeted immediately. I am chatted to and given several freebies. My child is spoken to by the owner, directly, and engaged in an actual, back-and-forth conversation, cheerfully, and in addition to the other customers in the store. I spend over $50.

Store #4: Greeted, chatted. Allowed a seat to rest, gather thoughts, respond to a text message. Child welcomed and allowed to play with the owner's own child's playthings. Engaged in random conversation.

Guess where I'll visit again?

I vow, in the presence of you, dear reader; I shall never again darken the door of Store #1 OR Store #2. Ever.

Saturday, September 17, 2011

Fun Fact

The average American chews 190 sticks of gum, drinks 600 sodas and 800 gallons of water, and eats 135 pounds of sugar and 19 pounds of cereal per year.

Saturday, September 10, 2011

Fun Fact

There are more than one hundred chemicals in one cup of coffee.

Monday, September 5, 2011

Retreat: When

When ... it was a bit ago. But you don't care about that, and neither do I, really. What matters, then, is when, in relation to life in general, I got away.

On the small, Maize timeline, and the larger, God's timing timeline. Where did my getaway fall in the grand scheme?

I may have mentioned before - I "asked" for a retreat before the "Trouble." It didn't happen, for a few reasons ... the biggest I think was my inability to communicate the urgency of my need. To an extrovert husband and two "moooooooooooooom-aged" kids ... it wasn't accepted understood. It wasn't feasible. Go away on a scrapbooking retreat weekend, sure; but don't ask to go off by yourself and do nothing for a few days. As my husband explained to me later, his thinking was, "I work hard, too, don't I deserve a vacation?" Yup. Only I have to refer to a previous post; my idea of vacation is "retreat" and not "attack a local theme park and/or ski slope."

So - we've established that I "wasn't supposed to" travel when I felt the desire to. Perhaps it wasn't yet a need... Enter: family trauma. Much stress and preoccupation. The only things that got billing were "eat, sleep, where are the kids, how is Ian today, did I send an update to everyone yet?" That routine completely filled 2-plus months. People brought food, did my laundry, fed the cat ... someone even came to clean once a month. I wouldn't really call it "allowing me to focus" on what mattered because truly, I didn't feel a lot of focus. I just WAS. Did the every day commute like it was my job ... because it was. Then ... the new normal; slow, at-home recovery. Adjusting to things with Ian home - the good and bad that comes with that. (no, I'm not ungrateful, just being honest).

So then it was August ... and it looked like a "now or never" window had appeared. Ian was comfortable doing the stairs alone. The kids weren't at school yet. The neighbors were around to help if needed.  It was hot; the perfect time to hole up inside in the AC ;)

I wanted to be gone more than 2 days; in my experience on other retreats, it takes me nearly a day to "settle in." But I didn't want to miss worship with my family. So that put us on weekdays.

Is there ever a good time to leave it all behind? Maybe. It's difficult for an overly-responsible personality to "ditch." Guilt inevitably comes. But you, dear friends, helped alleviate that guilt. You repeatedly reassured me that I "deserved" and needed a break. Thank you. Your support is incredibly important to me.

Saturday, September 3, 2011

Fun Fact

Cranberry jelly is the only jelly flavor that comes from the real fruit, not artificial flavoring.

Friday, September 2, 2011

Retreat: WHAT

Second in the retreat series... Since my last blog entry, I have had some comments in person and on the web - all positive and affirming. Folks have said, "So glad you got to do that... you really needed it!" I'll go ahead and hope they're saying that because they appreciate that I needed a break and not that I was such a pill before I left that they were relieved to have me vacate! :)

So we've covered the "who(m)": Just little 'ol me. I mentioned the title: DOME (Don Oxygen Mask Escape/Extravaganza/Emerency/Egress ... whatever)

Now for the what; what exactly did I DO on my own for three days in God's country?

My agenda would bore you, but I will list some basics. I rose and retired when I wished (this did not mean greating the sun or burning the midnight oil. Just no boundaries on either end). I took along lots of notebook paper, a white board, my laptop, the Bible, and lots of books.

My main goals were to get a handle on my goals and priorities. Think: shake the etch-a-sketch. I did a brain dump, where I listed everything I could think of that needed to be planned, organized, cleaned, repaired, taken care of. I made my categories on paper, but discovered the joys of www.workflowy.com and added it all there.

Next I began a series of goal-setting videos (by Chalene Johnson, of Beach Body/ P90X fame). The purpose of the series is to cause the viewer to adopt habits based on personal goals and priorities; basically skipping over "file the medical records" in favor of "place an ad in three newspapers today" if, say, "Increasing My Family Income" is at the top of my life and goal priority list (it's not).

As a result of those videos, and cemented by the fact my cell phone had already given signs of epic fail, I deduced my NEED (not desire, really) for a smart phone. I need a nag. I need a push. I need something with me all day long that holds my priorities and goals and that I won't leave at home in my purse when I "step out;" because I need to assess if that "stepping out" is in line with my priorities!

I'm not going to gush here ... I do it on facebook and in person, but: I LERVE my iPhone.

Wait a second?! I thought this was a spiritual journey, this retreat??

I DID pray. I DID read scripture throughout the day. I also perused the variety of daily devotional books I brought along, attempting to choose one to use this year to keep me focused and in the Word. However, in my LISTENING, I felt a strong nudge for this other, seemingly non-spiritual stuff - to get my house in order. To carve out moments for myself, my marriage, my children, my friends. To get my daily todos in line with my monthly and yearly todos. In order to conquer my Martha-isms, I need to do some prep work. To give myself permission to Be Here Now (my personal mantra), I need to know what God wants me to be doing. To LISTEN to Him, I need to clear my mind.

I know ... it hurts the brain, no? But this kind of sustained thought and organization therof is exactly what I can't get done at home ... at least, I haven't been able to. And so: retreat. I didn't swim, get a pedicure, listen to the waves crashing (there are no waves in Columbiana, OH) -- I did sprawl out on a bed I didn't have to make and listen to the storms ... that was nice.

Headwork = stress relief = retreat for Rachel. Greatly needed.

Saturday, August 27, 2011

Fun Fact

Apples, not caffeine, are more efficient for waking you in the morning.

Wednesday, August 10, 2011

Retreat: Who

First in my series of posts about retreat.  Bet you can guess what the next 5 are gonna be, right?

The plan: pack myself and some "stuff" and head off by myself for three full days.  Not unreachable, wilderness-type stuff, but more the comforts of home away from home.  No interruptions I don't invite or allow, a fluid, flexible personal agenda, and as much silence as possible.

Just Little 'Ol Me.

"Vacationing" and "retreating" could be considered two different things ... I suppose what your mind conjures up will dictate your own opinions;  Mr. Mark may think of retreat as Civil-War related, and Gramma Carol may think of vacationing at the beach.

For me, "Vacation" = effort, forced fun, scheduling, cost, planning, getting your hopes up, some down time between meals, handling disappointment, orchestrating activities.  Just going from one person to two dramatically increases the thought and effort going into vacation plans. (Bear with me; it's not that I think all vacations are misery.  I promise.)

Truth be told: I'd rather stay home.  I LIKE my home.  I like my house, my books, my family, my photos, my town.  I don't have this insatiable desire (which always fascinates me-- truly), to "get away."  Is the need to leave here or go there?  I'll concede it can be both, in theory.  Just not for me.

"Retreat" = relax. unwind. no expectations. think, dream, read. quiet.  If this were at all possible with a husband and two children in tow, I'd be all for it.  The crux is that every DAY I desire alone, quiet time.  I breathe better, I think more clearly, I am able to get a handle on things.  I often attempt to do so before the house wakes, but I am finding that more and more difficult as the youngest member of the family is quite the alarm-clock preempt-er and has an internal sensor for that top-step-squeak.

And so, I retreat.  Away from here, yes, but with no particular agenda there.

Yes, I needed a break.  But we'll talk more about that when we get to the "why." ;)

Monday, August 8, 2011

reTREAT!!!!!!!!!!


I am writing this in a lovely room in another state.

I am here, alone. For three days.

I am incredibly happy.

My husband recognized my need for some time to myself. Not just a "go to Starbucks and get yourself a coffee" kind of alone time, but uninterrupted, nearly silent, do-what-I-want-whenever time. A monastery would be heavenly, but this place will do nicely.

I call it a DOME.  Don Oxygen Mask Escape. I need this; I need to recharge, refresh, re-examine.

I like that "dome"
sounds like "om."
If you know me (and if you don't, why are you here, exactly?), you'll know I can't possibly leave the house without some paper and books ... this retreat is not all lying about and eating Andes candies, thoughtfully placed by "Nancy," my housekeeper. In fact, it's a respite from the last few months, but it's also an opportunity to clear the clutter in my mind, so I can tackle the clutter at the house. Reorganize my priorities so I can keep my eyes on my goals every day. Spend some quality time calling out to God, with the actual time and silence to LISTEN, LISTEN, LISTEN.

So, I have a schedule. I made it myself. And I'm allowed to stray from it, though I probably won't.

All I wanted to say is - I'm here, I'm refreshing, I hope to be a better everything when I return (and a little less of some things).

Thank all of you for supporting our family, and encouraging me.  Thank you, neighbors, for looking out for Ian and the kiddos while I take this completely selfish and necessary excursion.  Thank you, God, for the incredible blessings in our lives, and that You care for me, as I cast my cares on You.

Amen.

Saturday, August 6, 2011

Fun Fact

Drinking water after eating reduces the acid in your mouth by 61 percent.

Saturday, July 30, 2011

Saturday, July 23, 2011

Saturday, July 16, 2011

Fun Fact

The abbreviation for pound, "lb.," comes from the astrological sign Libra, meaning "balance."

Saturday, July 9, 2011

Fun Fact

It is possible to drown and not die.  Technically the term drowning refers to the process of taking water into the lungs, not to death caused by that process.

We're Good. We're Normal. And Pigs are Fed and Ready for Takeoff.

Thanks everyone for your prayers and good wishes.  Ian's scan came back clear.  The NIH was thrilled with his recovery and progress since this latest surgery.  He will return in four months for his next scan, so keep us in your prayers ... well, just in general!  but November-ish will be the next check.  This is brief, 'cause I'm going to enjoy the day with my boys (Audrey is at Camp Jones this week).  Praise God for our blessings!

Monday, July 4, 2011

Here we go ... No Whammies ...

I don't normally blog about this.

As many a dear reader will recall, we did not begin this brain surgery drama in March of this year.  It all began over 5 years ago, in February 2006, when Ian was diagnosed with an Anaplastic Astrocytoma (III).  The golf-ball sized tumor was removed, and radiation and chemo followed.

Every three months since that surgery (for 5 years - you do the math), he has had a follow-up MRI at the National Institute of Health in Bethesda, MD.  The MRIs are frequent because the grade of tumor indicates it did not take long to form and cause trouble ... perhaps as few as three months.

So we've been living our lives as if nothing is wrong and everyone's fine, while at the same time living in three-month increments of ease and terror (at least for me; Ian always saw the trips as a diversion with a side of grease at The Tastee Diner.)  I'm usually at home, taking deep breaths and waiting for the phone to ring after his clinic appointment with the doctors who review his scans and meet with him the morning after his MRI.

All this history to say:  This week will be his first trip since the last incident.  This Thursday he will travel down (with his mom; I'm staying home) to have his "routine" MRI and test results, Friday morning.

I think you can grasp the gravity of this situation, so I won't attempt to spell it out.  But please, if you're able, pray for safe travels, and a clear scan, and for my ability to breathe in the meantime.

Love you all, and God Bless America.

Saturday, July 2, 2011

Fun Fact

"The Naked Truth"


A fable says that Truth and Falsehood went bathing; Falsehood came first out of the water and dressed herself in Truth's garments.  Truth, unwilling to take those of falsehood, went naked.

Monday, June 27, 2011

Stage Three: Outpatient Therapy (and Miscellanies)

When we last left our hero, he was bounding up stairs (ok, not bounding), eating salads, and reading Richard Scarry.  He was anxiously awaiting the removal of his PEG tube and the ability (and permission!) to sleep upstairs.

Currently: we have sent back the wheelchair and hospital bed.  Ian sleeps upstairs.  I no longer escort him to the bathroom/shower (he still uses a shower seat).  He is fully capable of making his own meals, although digging around in the fridge sometimes presents a problem (balance AND leaning, not so much).

The PEG tube is gone; no more wires!  Naturally, he is thrilled by this development.

Thanks to my MIL's fortuitous Christmas gift, he's able to read ... although it's not a comfortable, relaxing activity, it CAN be done.  (Current reads: Robinson Crusoe and More Than a Carpenter.)

At the annual Church Beer Fest (don't ask!), he partook of his first ABS2 barley-based beverage.

Most foods are on the menu; he is careful with each bite and swallow and aware of his limitations (read: nothing dry, like crackers or toast without loads of butter ...).

We have now moved from in-home therapy to out.  We travel twice a week and Ian has speech, occupational and physical therapy concurrently ... so a grueling 3-hr session each visit.  He is expected (and is harassed) into following up with a series of exercises at home.

Hi, I'm Ian.
I promise not to
stand up so fast next time.
His right side, tinglenumbs, is status quo.  His eye dance remains.  He sees a neuro-ophthalmologist mid-July for lots of testing and hopefully some answers on that front.  His balance is FAR from stellar; he has had only 3 falls so far (we like to call them "floor transfers"), however one was QUITE exciting ... a leap up out of bed led to a tree-esque back-flop.  Luckily he spared his head and the subsequent EKG showed all was well.  When a very large man falls flat, it's IMPRESSIVE! (also, amazingly enough in our house, he made contact with NOTHING on the way down.  It was like there was already one of those chalk outline guys there, waiting for him like a target.)

We went to Ian's (office? employer? business?) for a visit, and everyone seemed very pleased to see him up and about.  It did him good to chat and reconnect, I think.  They seemed amenable to his return, whenever that may be or however that might look, so that's encouraging.  Even if they were "smiling and nodding," I think it gave him a hopeful boost.

A bit of humor ("...If we couldn't laugh we would all go insane"):  Parents of young(ish) children will no doubt recall the first Cars. At the end of the movie, Luigi, the tire salescar, is flabbergasted to be visited by "a real Ferari!!!  Guido!  Punch me! Punch me in the face! THIS is the most GLORIOUS day of ma life."  (After which Guido keels over.)  Ian has named his right hand "Guido" because, in fact, it DOES frequently punch him in the face (fine and gross motor skills are severely lacking as yet).  See, I told you he was in good spirits! :)

What you can do:
Pray, naturally; this is the long haul portion of recovery.  New territory, no real answers, just hard work that provides tiny improvements.
Encourage: "you look great!"s are becoming commonplace, which is lovely.
Challenge: sometimes rather than attempt something, Ian will look at me and give me a mope to say, "could you do this?"  Trying, failing, then asking for help is one thing, but lack of attempt -- even if it's something you haven't tried before -- is not only counter-productive, it's very UNlike my husband. (look, I'm not a she-devil; I don't bark orders or force him to take out the trash.)  Sometimes he needs a, "hey, bring me that hammer, would ya?" kind of prodding to prove to himself that as cumbersome as it may be, he CAN and SHOULD do stuff.

*After Brain Surgery #2

Saturday, June 18, 2011

Fun Fact

The word cop came from the English term "Constable on Patrol."

Monday, June 13, 2011

Saturday, June 11, 2011

Fun Fact

Dr. Seuss coined the word nerd in his 1950 book If I Ran the Zoo.

Friday, June 10, 2011

Foto Friday: This Moment

{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama



Saturday, June 4, 2011

Fun Fact

The word accordion comes from the German word akkord, which means "agreement, harmony."

Friday, June 3, 2011

Foto Friday: This Moment





{this moment} - A Friday ritual. A single photo - no words - capturing a moment from the week. A simple, special, extraordinary moment. A moment I want to pause, savor and remember. -SouleMama

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.

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.

Wednesday, May 25, 2011

Fun Fact

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

Saturday, May 21, 2011

Saturday, May 14, 2011

Fun Fact

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

Monday, May 9, 2011

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.

Saturday, May 7, 2011

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.

Saturday, April 30, 2011

Fun Fact

Ernest Vincent Wright wrote the fifty-thousand-word novel Gadsby without any word containing "e."

Friday, April 29, 2011

There's No Place Like Home

Ian is home!

We arrived yesterday around 3pm.  Leaving the hospital was like coming home with a newborn; "They're letting me take this guy home? I'm now responsible for his care?  Yikes!"

We arranged for a hospital bed in he parlor, where he sleeps soundly as I type.  It's great to have him home.  He is relieved to be here.

It must be very odd after so long away.  And then there's his condition...

So I've said we took a step backward - I talked about the dumbs and the headaches.  I will do my best, here, to describe what's going on.

Saturday morning (I wasn't there), Ian became unable to "find is words" and had a stat MRI.  In this and subsequent scans, nothing has shown different, worse, anything.  The reasons for his symptoms now are deemed purely metabolic; all we can do is ensure he is properly rested, hydrated and medicated and wait for this to pass.

The good news is:

  • he has had few if any headaches since coming home... and that's after a steady few days of searing ones.  He gets them from positional change, and I'm sure some of you migraine sufferers can relate to that.  
  • he is happy to have visitors*
  • his at-home therapy will start soon (perhaps today -- I'm waiting for a call)
  • the kids are happy to have Daddy back

The difficult news is:

  • we have no idea how long this "setback phase" will last.  There was no prediction of its onset, and so therefore no prediction for its passing.  If you've been with a stroke patient, you know what a struggle it is for HIM to communicate, and for ME to be patient, interpret, understand, take action.  Something like, "How was your day at school, Audrey" sounds like "how... is... is... how... you... how... at... the... place... where... place... how... today?"
  • I am on overdrive, taking care of 2 kids and Ian.  I have to keep track of his intake of food, fluids, meds.  I have to escort him to the bathroom or empty his urinal.  I have to take care of all the regular household duties and I have a few at-home paid jobs to do in the meantime to contribute financially.
*In addition to being the mom, chauffeur, dietitian, chef, maid, nurse, I am also the wizard:  Nobody gets to see the patient, no way, no how, UNLESS it's arranged through me.  PAH-LEASE don't show up unannounced, even if it's to drop off cookies; if my front door is open, the storm door will reveal your presence to the kids, and there will be a flurry of activity that may wake Ian, cause him to be interrupted in eating something (which is also a challenge) or interrupt me in one of a series of important tasks.  Ian is happy to have visitors; it cheers him!  We welcome them!  We just need warning.  I've been gracious to visitors thus far; don't make me shake the can of you-know-what and spray y'all because I. WILL. DO. IT.  You won't like me when I'm angry.


Tuesday, April 26, 2011

Drat.

Foiled again.

I stayed at the hospital last night, intending to scoop him up and take him home this morning.  Unfortunately he has an off-and-on killer headache and a case of the "dumbs" -- the seizure-like symptoms of not being able to bring words to mind or articulate phrases or thoughts.  Concerning, frustrating, and enough of a disturbance to keep him here an extra day for observation.  He had an MRI, EEG, and the gamut of blood work -- all showing things to be "normal" and nothing of concern.  So now it's more observation, pain meds as needed, and some preventative headache/seizure med changes.  (for those of you familiar, Topamax is the likely candidate).


What now? home tomorrow, perhaps.  However, since he could be tomorrow the way he is today, it could be more of a cloistered day in the bed as opposed to a fresh-air day on the porch.  Well, we'll just to have to play it by ear, one day at a time, as is our custom.

The good news: trach is out, sleep is sound, he's able to lie flat.  He is back on food (with limitations and alterations).

Prayers:  That this is temporary.  Even if it's long-term temporary, that the dumbs resolve, the pain subsides, and the other therapy progresses as it has been.  That he's able to feel the prayers, that they lift his spirits when he gets frustrated (he's much more likely to become angry and depressed at not being able to say something he's thinking, or come up with the correct word, than he is that his foot won't do what he wants it to do).

Mental and psychological endurance for me; I'm entering the care-giving stage.

Patience for the kids; dad can't toss the ball or pick them up.  Probably can't read any stories.  That will be disappointing at best, distressing at worst.

Support:  I have no idea what things will look like going forward; we will have in-home therapy for a bit, then out patient. That will mean taxi service, perhaps, or child sitting while I taxi, or a little of both.  Follow-up appointment(s) with surgeon and misc. specialists.  Not sure his tolerance for the everyday goings-on of children, so they might need some playdates; the good news is we're coming up on good playing-outside weather.

Saturday, April 23, 2011

Fun Fact

The name for Oz in The Wizard of Oz was thought up when the author, L. Frank Baum, looked at his filing cabinet and saw A-N and O-Z, hence Oz.

Friday, April 22, 2011

Update: April 22

Who has two holes in his head 
and comes home Tuesday soon?
THIS GUY.

Sunday, April 17, 2011

Dear Blog Stalker(s): Update, April 17

Hello, friend.

Have you obsessively routinely been checking for updates here?  If so, I do apologize.  These days have turned into the "daily drag" of victories, setbacks, and steady, snail-steps forward (Wait, snails don't step, do they?  Hmm.).

When we last left our hero, he was working hard, feeling better and going out on the town.

Not sure if the previous virus was just that or the beginning of pneumonia, but no matter; he has the latter now and is back on the IV antibiotic chasers. (We are not sure of the cause, but it's possibly a result of aspiration from attempts at eating and drinking.) As a result, he has been relegated to tube feeds only; a bummer after previous culinary excursions.  Also pushed back (I'm full of asides today, but it always irritates me, that phrase "pushed back" -- it seems to me that if you're looking at a calendar, the way MY mind operates (visually) that moving something to a LATER date would be pushing it FORWARD.  Am I alone here?  I digress.)  is the removal of his trach, which was tentatively scheduled for earlier last week.  No dice; they want his lungs all healthy before they go fussing with that.  Bummer.

His coughing and .... ahem... that WORD ... is MUCH less.  I stayed the night Friday and he got a ton more contiguous sleep (save the &*@#&^ IV machine's beeps and the nurse's inability to make it stop) than he has in weeks.

His balance has improved.  His right side is still tingling/numb and his right hand lacks quite a bit of strength and fine motor skill.  We are not sure how much, if any, of normal function on that side will return, but what we DO know is that it has significantly improved since before surgery.  It's possible that the brain stem sustained permanent damage from the bleeding event, and it's (just as?) possible that as blood ebbs and swelling decreases that more improvements will come.  We just don't know.

As far as his return home: WE DON'T KNOW (common theme).  At this point the plan will be to have him come home, as opposed to a closer, in-patient rehab facility.  But seeing as he still has a trach and feeding tube, and now pneumonia ... the timing of all things is uncertain.  We just do the day-at-a-time deal.

Prayers: healing from the lung cruds.  Continued (encouraging) steps forward.  Trach removal at the earliest possible time, and stronger swallowing function.  If he can get the trach out, chances are the swallowing (and even chances for combating pneumonia?) will improve.  Then the feeding tube can go ... It's kind of an "if-then cycle".

I will endeavor to keep you posted on a more regular basis this week.  In the meantime, prayers on warming up the weather and calming the winds wouldn't be a bad thing, either!

Saturday, April 16, 2011

Fun Fact

In an episode of The Simpsons, Sideshow Bob's criminal number is 24601, the same as the criminal number of Jean Valjean in Les Miserables.

Saturday, April 9, 2011

Things I Have Learned

Lessons learned lately (not a comprehensive list):

  • The Pittsburgh motto: "You can't get there from here" is not limited to the city itself, but includes the hospitals within.  No, you cannot get to the 7th floor of Mercy Hospital this week.  Except you can, except you have to take the green elevator to the 1st or 5th floors and go to the purple elevators, do the hokey pokey and say, "hocus pocus" three times.

  • Someone has it WAY worse than you.  And he's right down the hall.
  • This is what it's like to be a single, working mom.
  • In grief: joy.  From the mud: a daffodil.
  • Doctors breeze in and out, but nurses are the infantry.
  • Many people who know Ian well didn't know his first name is really James.
  • (some) Hospital food is not that bad.  Good, in fact.
  • We produce, on average, a cup of SECRETIONS* a day, but we swallow them so we don't notice. (Ian doesn't have this luxury. Yet.)
  • Sign your will before you can't write ;)
  • This is how it looks when a community rallies.  These are the hands and feet of the Body.  This is how my peeps ROLL.   I can't wait to return the favor(s).
  • It costs $4/day to watch teevee at the hospital.  I guess they have to pay for the incredible amount of single-use vacuum sealed plastic apparatus they go through in a day ...
  • The "INFORMATION" sign at the information desk really DOES need some quotation marks.  Or the irony font (which has yet to be invented).  

And now, your moment of zen:

jailbreak! with proper permission, of course :)

*I haaaaaaaaaaaate this word.

Fun Fact

In the 1983 film Jaws 3D, the shark blows up.  Some of the shark guts were stuffed E.T. dolls being sold at the time.

Thursday, April 7, 2011

It's a Beautiful Day

And nearly as beautiful in here.

If yesterday's events were caused by a virus, today the virus recedes.  Slowly.  No fever to speak of, still weak and tired but not wiped out like yesterday.  On the whole, much less snot coming out.  Today's menu included jello and an ensure.  Progress!

A showered Ian is now resting up for physical therapy at 3.

In case you missed yesterday - the MRI is "clear" and showed nothing to be concerned about.  Yes, he still has tingling in his left side, but his foot is better than it was.  It's possible his hand is, too, slightly, but he can't really tell.  His walking today was NOT off balance, but I would say he was lacking in some control of the right side, and looked dizzy/weak as opposed to numb with no center of gravity.  Translation: walk=good.  Sick=bad.  Tomorrow=less sick + more walk + some food.  Progress.

Prayers: sleep.  Poor bugger gets very little contiguous shuteye.  I spent the night last night and I would say he MIGHT have gone an hour without coughing... and when I say coughing, it's not the kind you fall back asleep immediately after.  It's snot-spewing choke-like hacking.  Phooey.

If it's a virus, that it's packed its bags.  We need another setback in rehab like, well, a(nother) hole in the head.

Wednesday, April 6, 2011

What I Wouldn't Give For a Mesa Plateau


Instead, we get this ^  ... up and down and sometimes UPSIDEdown.

On Monday, Ian got to try pudding and jello and gingerale!  He topped it all off with a chunk of chocolae cake and a glass of milk at the end of a long day of therapy.  You should have seen his eyes when he realized the cake they had (cruelly) baked in the therapy room and the slice she was bringing over with a fork was for HIM.  It was a glorious day.  He was strong, in good spirits, doing therapy without his oxygen supplement. His voice was strong and his "secretions" (if I never that word after we get out of here it will be TOO SOON) were lessened.

Yesterday ... we (his family support staff) took the day off: illness, tasks, etc ... I talked to him on the PHONE to check in.  Wow.  He sounded tired but good.

Today I got here just in time to see him right after his swallowing test (barium swallow with xray picture to see where the stuff goes), which he did not "pass."  So no good foods for him for a bit.  His coughs were thick and different and he had a fever.  And then he threw up his feeding.  Told me that he had tingling on his LEFT side as of the morning.  If you have followed since the beginning here, you'll know that his RIGHT side is mostly numb and tingling, and that we headed to the hospital when the left thumb started to tingle and he couldn't swallow.  So ... any move on the "more things tingling front" leads to immediate concern.

Luckily the doctors here are wonderful and hooked us right up with a scan and then an MRI.  Thankfully, those showed no new bleed and if anything, show a decrease in blood product or swelling from the operation itself.  SO... we don't have any cause for the tingling now except that it's possible some errant blood went carousing and caused the tingles.  In the meantime, it seems to me that he has a virus, but that would be a layman's opinion.  Who knows.

What I DO know is that he has gone at least 30 minutes without coughing, he no longer has the chills with fever, and he's sleeping comfortably.  His color isn't back to normal but it's not green.

What does all of this mean?  Just that every day is different.  We can rejoice in the victories and try not to be defeated in the setbacks.  We have hope, and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us. (Romans 5:5)

Prayer: for health and relief from the cough and fever.  Continued strength.  I'm staying the night- rest for me and that my back doesn't get any worse because of it (it's angry at the moment).  For a fresh, new day tomorrow.  Encouragement and stamina.

Thanks, y'all.

Sunday, April 3, 2011

Ok ,Ok, update time!

My apologies to all our loyal fans; I haven't updated in a bit.

This is today:

We're gonna call it "resting comfortably."  He's gone nearly 2 hours now without coughing ONCE.  His body is resting, his throat and lungs and whatnot are cooperating.  Yay!

Today was a therapy day (he has 6/7 days therapy; Sat was his day off this week).  He did some swallowing attempts - I would call his success rate about 50% there (watching someone learn how to swallow is EXCRUCIATING, at least for me).  He lets an ice chip melt in his mouth, then allows it to gradually go into his throat and trigger the swallowing mechanism.  He has to concentrate on breathing through his nose while doing so, and that whole "not going down the wrong pipe" thing.  But in the midst of that therapy, he got a shout-out from the peeps, which made his DAY.

Next was occupational therapy where he put things together using pvc pipe and joints to mimic shapes on a printout.  Then he played solitaire (no, really - coordination, grasping, etc.  It's therapy!).  Then it was off to PT where they had him doing laps (no, really; three walks around the wing, two without an oxygen hookup).  

This was a short day; usually he will do that much, then have a break, then hit it again till around 3, but today he was done at 11. Tomorrow, apparently, will be grueling.

I have to say this over and over, but thank you SO much to ... all of you.  Just reading this means you care, which means so much.  The generosity and kindness of everyone of our friends, family, community and church body has been overwhelming.  We are SO blessed.

Today will be the first time the kids will see Ian in rehab ... the last time they saw him he doesn't really remember seeing them, so I am looking forward to this reunion.  Other than that ... not much to report.  Each day the same and different.  Forward motion (no steps back since the trach incident).  

This was him the other day: 
goofy smile but a smile nonetheless:

FYI Renz and Tucker: he's in the pack and play here:

This is where they put you if you're a bad boy and try to get to the potty on your own at night.
He asked nicely and now he's allowed to sleep in a big-boy bed.
Please, if you want to know something, ask away.  I have time, when at the hospital at least, to answer emails and (sometimes) update the blog.

Saturday, April 2, 2011

Fun Fact

The first time the "f-word" was spoken in a movie was by Marianne Faithfull in the 1968 film I'll Never Forget Whatshisname.   In Brian De Palma's 1984 movie Scarface, the word is spoken 206 times -- an average of every 29 seconds.

Thursday, March 31, 2011

How's It Gonna Be?

So I think we're settled on the "long road ahead" part of the journey.  Little hills and valleys but not as many bends.  Something like that.

Ian is back in rehab, still coughing up yuck, but less, it seems (at least during the day - fitful nights, according to his mom, of coughing and her suctioning for him).  The days are hard work - learning to walk again (his right side is still numb/tingling, that might not resolve but it's too soon to tell), getting in and out of beds, wheelchairs, dressing himself ... in all of these things he is making progress, to my eye.  His facial muscles are definitely better and his eyes look good ... unfortunately he says he still has double vision and pronounced dizziness when changing position.  Never quite sure whether that's a product of inactivity, lack of cheeseburgers or neuro damage.  Again, too soon to tell.

So each day is an up-and-down, I think, and for the foreseeable future.  That is to say, I doubt I will be able to come home and update: "today was a good day!" without some reservations.  But the truth is, every day IS a good day, and he IS progressing.  Questions abound, but they're none we have answers to, so we'll let them unasked as well.

Along those lines, just some helpful hints for everyone concerned for us:

1. "How are the kids handling things?" The kids are doing well.  They are loved on by family and community, we are all watching for sad episodes and handling them appropriately.  Audrey misses Daddy most vocally, but I'm sure Ezra would love to have him home just as much.  We are not, for the most part, mopey and sad while together.  We are a new "normal" that is a steady line, not a jagged one.

2. "How's he doing?"  He's doing.  He's working very hard.  Emotionally (for me) it is difficult when he gets into his wheelchair and a long line of drool falls out of his mouth... but then again, he's able to put his own pants on ... so it's not like he's not making progress.  His spirits alternate, as one would expect, but he's as sharp as ever and is so far seeming patient and determined and not overly frustrated and discouraged.

3. "How are YOU?"  I'm "doing."  Ian would tell you that I'm lousy at self-care until things get pretty intense, but I'm working on that.  God bless everyone around me for giving me gentle reminders to take care of myself; right now I am battling vertigo (a new thing for me) but otherwise I am doing well.  The drive is tiring; I have gotten some books on tape to keep me company.   I pretty much take one day at a time, although sometimes they DO come all at once ... I'm simultaneously thinking, "how are we going to deal with finances," and "I'm sure he'll kick this and be able to go back to work in time for it not to matter" and "do I need to get a bath chair," and "I wonder if he can help coach T-Ball this spring."  So mentally it's a challenge to cope, but when I re-center and ask God where HE wants my thoughts, He gives me that peace and wisdom.

4. "What do you need? Can I help?"  Check out the Helping Hands website for immediate, tangible needs.  Prayer is ALWAYS needed.  We have no idea how long of road this is, so selfishly I guess I will say: don't forget about us.  When things get "normalized" and we're doing the therapy/rehab thing in Pittsburgh or (eventually, hopefully) closer, we will still have struggles and whatnot - I just ask that as you come along side our family ... pace yourself.  Does that make sense?  Spread the love over weeks and months because endurance is different than emergency.

Yesterday I got a big smile (I forget about what), got to see him being a bit feisty (when his physical therapist turned her back he made a swatting motion, and I know he was thinking, "what a twit" about her, lol).  I also got my first snuggle in four weeks:

Tuesday, March 29, 2011

Trach Me With A Spoon

Update on the past few days:

Ian coughed his fool head off and because the wound had not closed fully underneath his trach, the sucker moved.  When they tried to suction it via catheter, they weren't able to get the tube to go down ... so checking for blockage, to make sure he was breathing, all this stuff ... moved him to a medical floor to watch him all night (Sun) till the ENT guy could take a look.  We were told he would be right back down to rehab in the morning, but then the "procedure" wasn't going to be till Tues (today) and so they cleared out his room (I knew once I hung those cards we'd get booted) and THEN they came bedside and shoved the thing around and it was fixed! but then we had to be re-admitted into rehab, meaning a "hurry up and wait call the insurance for clearance, Clarence," etc.  Gah!

SO.

Ian is now ensconced in rehab once again, with a fixed trach.  When he smiled at me today (actually, he was laughing at me, because I was fighting with a lounge chair), it looked like a genuine, full-face smile.  I'll take it.

If you want to send something, send it to:

(James) Ian Maize
UPMC Mercy
Floor 6E  Room 6004
1400 Locust Street
Pittsburgh PA 15219

March 29 2011

Brief update for those of you not following on facebook: they fixed his trach yesterday.  I haven't called yet or been in to find out if he's merrily walking down the halls or not - update(s) to follow.

Monday, March 28, 2011

Update and FYIs

1. This Blog is called No Sugar because I tend to "shoot from the hip," as it were.  A friend helped me name it.  Unfortunately the web address has to be hold-the-sugar because some weirdo already has a blog at "nosugarblogspot" so there you go.

2. If you are not on facebook and want to get an email as soon as I post something new here, scroll down on this page and to the right you will see a white box where you can enter your email.  You will have to enter a "funny word" to verify you're not a spammer and then you will get a confirmation email you will have to click on ... and that's it.

3. At the beginning of the year I took out my "Book of Useless Information" and entered all the fun ones.  They are scheduled to post once a week; I'm not scouring the net for weird facts while at the hospital (sorry, Emily, my secret's out).

---------------------UPDATE---------------------------

Well it was supposed to be another full week of therapy.  Ian is getting stronger on that front and despite his incredible weight-loss program (down 50 lbs, last count), his color is good, his limbs get stronger, his ability to communicate is good.

However last night one big cough and subsequent suction dislocated his trach.  We don't know yet to what extent; he still breathes just fine, but I don't think much is coming from the trach but instead from the ... well, gaping flesh hole underneath it, in his neck.  Sorry - it's gruesome.  So all that to say, we are now waiting for them to tell us when they will take him into surgery, check everything out, reinsert if necessary, possibly address the "wound" by stitches? or something.

Sorry I can't give any more info- we don't have it.  But other than probably being annoyed he can't go for more strolls down the hall today, Ian is doing fine.  He did share with me yesterday that he's worried about the future... we didn't go into detail there but I would imagine it runs along the lines of, "what will I be able to do, not do, will I go back to work or sit at home and sulk, what will that look like, etc."  So your prayers for his neck and head are very much appreciated.

Also, I want to point out that his current condition has NOTHING TO DO WITH BRIAN FIFE OR ANY OF HIS AFFILIATES.  lol.

Saturday, March 26, 2011

Friday, March 25, 2011

March 25 2011

I can't believe it's been a week of rehab already.  Today was a big day; trach downsized again, feeding tube installed into stomach instead of nose (woohoo!) and a fabulous accommodating haircut via our neighbor, Karen.  Awesome.  (I am NOT attempting a shave with that trach in place!)


Today was hard work; same drill with all the therapies.  In speech she asked him to name as many words that start with "M" as he could in a minute.  His words included "mitochondria" and "myriad."  Of course they did.  No cognitive difficulties here.  

In just a day his balance has improved.  He's far from walking on his own, but he finds his "center" more readily.  That right foot will NOT cooperate so it takes quite a bit of effort to flop its size 13 self where it needs to be.  But he is determined and pushed himself quite a bit today.  

Tomorrow: rinse, repeat.  Sunday he gets a sabbath! and Monday back at it again.  

They are focused on getting his trach out.  I have mixed feelings about that, but I suppose since he does have a strong cough, he'll be able to get rid of the crud still in his throat.  (true love is suctioning cupfuls of snot out of your husband's neck-hole while chewing a mouthful of trailmix.)  Anyway, so ... swallowing is still a high priority, for all of us.  Today he coughed a bunch up into his mouth (and made a TERRIBLE face), which means he's pushing that hard, which is great.  So I'm encouraged and I hope he is, too.  

Many thanks to everyone who has called, emailed, txtd, posted, mailed, cooked, kid-wrangled, etc for us.  
I can't believe we're approaching week 4 and I've hardly had to concern myself with the "home front" at all.  Blessed!

I hung the cards, we've got balloons.  Visiting is limited because of his busy schedule, but I'm sure tangible forms of encouragement are/will be appreciated.  He's got at least another full week here, probably more.

Prayers:
Ian -swallowing.  that would be nice.  did you try that exercise yesterday?  difficult, eh?
overall strength: breathing and swallowing and speaking go hand-in-hand with overall strength and muscle use.  Incredible how the body sustains its parts via other parts.
Peace and fortitude.  
Rachel - self-care.  Starting to experience physical symptoms of prolonged stress.  Need physical and mental rest.  Alertness for the drives back and forth, safety.  Wisdom for when to ask questions, when to sit back and listen.
Kiddos -  what to say here?  protection, comfort, assurance that God has His hand on Daddy and we can be confident in His plan.

Thursday, March 24, 2011

No Pictures: No Need. Thankful Thursday

I always meant to start that here at No Sugar; Thankful Thursday to piggyback Foto Friday.  It just never got off the ground (perfectionist tendencies!).  But here's a start: I am thankful that ...

1. Ian has had 3 days of forward progress at therapy.
2. the staff is friendly and knowledgeable and no-nonsense.
3. the little victories, like keeping the drool in the mouth, using the facilities, making talking-like sounds, winking at me and giving the nurse the "sarcastic eyebrow".

I know I haven't posted much since my crabby post about the first night at rehab.  This post will be random and not comprehensive, but it's 1045 and I need sleep.

Ian is seen by 4 therapists each day, some more than once: Physical Therapy, Occupational Therapy, Speech Therapy and ... something else.  (I told you this wouldn't be brilliant writing.)  They start around 9 am and work the snot outta the boy; he gets a short break between sessions and then it's back at it.  By 5 pm he finishes up and has at least once slept from 5pm till 9am; he's THAT tired.

Everything they do is geared toward "life on the outside" and strengthening.  It's hard to tell which is neuro and which is plain atrophy from lying in bed for 2 weeks, but in any case, he makes progress every day.  Thing One has him squeezing giant clothespins and doing 2-lb curls.  Thing Two has him walking down the hallway, trying to find his mid-point balance.  Thing Three helps with the trach and talking attachment and swallowing attempts and speaking attempts and breathing.  Thing Four is terribly important as well; I just can't remember who that is :)

Tomorrow at 2 he will be having a feeding tube installed into his side.  He is THRILLED (no sarcasm) about this.  Finally, that blasted thing out of his nose.

He's learning how to walk.   He's learning how to talk and swallow and make his limbs obey.  (Give this a shot, would you?  Swallow without closing your lips.  Yeah.  That's what he's been doing (or not doing) for a few weeks.  Today, he swallowed an ice-chip's worth of water.  *HAPPY DANCE*.

Monday, March 21, 2011

Tired of Tired (with tired on top)

So, some things about me:

1.  I'm an introvert. If you're unfamiliar with the term, here you go:


Basically, an introvert is a person who is energized by being alone and whose energy is drained by being around other people.  Introverts are more concerned with the inner world of the mind. They enjoy thinking, exploring their thoughts and feelings. They often avoid social situations because being around people drains their energy. This is true even if they have good social skills. After being with people for any length of time, such as at a party, they need time alone to "recharge."


2.  I crave quiet, order and routine.

3.  I have physiological issues with anxiety.

4.  I prefer not to drive farther than 30 minutes away from home (see #3)

5.  I am fiercely independent and have only recently learned not to recoil from asking for help.

I have spent the past two weeks in more close contact and conversation with friends, family and strangers than I ever have in my LIFE.  I have ruled the waiting room with an iron fist.  I have learned how to navigate the doctors, nurses, cafeteria, elevators and parking garage.  I have driven an hour each way on my OWN.

Every day is different.  I'm so tired I can barely keep the plans straight.  Nurses have shifts (and rightly so), doctors go on vacation, patients transfer hospitals.  My kids, who are completely loved and cared for by some AMAZING folks in town, have yet to have a "normal" evening in over 2 weeks.

So.  no conclusion.  Just rambling.  This sucks, and I can't even complain to my best friend about it all.
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Oh, but wait!  You want to hear about IAN!

He spent some quality time in this chair three days in a row: (it wore him out something fierce)



Because he was able to ditch the ventilator, he was cleared to head to rehab ... which meant a trek to a different hospital.  This is a GOOD thing.  A positive, proactive step.  Not without frustrations (don't these places communicate? why does the nurse think the reason he takes seizure meds is that he just had brain surgery?  The two are not related, and I had a heck of a time explaining to her ESL self that no, in fact, the brain surgery he JUST had did NOT produce seizures ...).  Why, when they came in and hung him from the luggage-scale apparatus were they off by 10 kg?  (uh, I do NOT outweigh my husband ... not even while carrying an extra person-unit during my ninth month).  Why did it take the respiratory nurse 20 trips in and out of the room to get all the tools she needed for a pretty standard procedure?  Why did it take so long to find an oxygen hookup for a patient arriving with a trach and O2 needs?  Why is the nurse looking at the computer details and the scribbling them onto a half-sheet of paper with no lines?  Gah!!!

The room is nice.  The view is nice.  The helipad is right out the window.  Technically there's a window seat (although it doubles as the air conditioner).  I may even be able to find the place again.  I reserve judgement about the staff until I see some competency.

I'm not discouraged, I'm exhausted.  Maybe gloomy and melancholy, at least in the moment.  I'd ask for help in cheering up, but I have no idea what to suggest!

Ian could use the encouragement; I will be hanging up his cards this week; now would be the time for the gag gifts to come back, I think.  Also, he's supposed to bring in regular clothing ... I was thinking some funny tshirts might cheer him, if you feel so inclined (inoffensive, please?) Nica guys - do you have your shirts made for this year?

Other than that ... it's only Monday of a very long week.  I do my best to update daily but it doesn't always happen, so assume no news is good news and I'll catch everyone up when I can.

*A special, giant thanks to the Hagen and DeJeu families for their selfless giving this evening.  I'm running out of phrases to express utter gratitude.*