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Saturday, October 23, 2021

Who needs a walker?


We continue to thank God for Jennifer's progress.

This week:

1.  We moved back up to our bedroom upstairs.  Jennifer is navigating the stairs confidently-but does hold on to the railing going each way.

2. We moved out the upright piano we inherited from Jennifer's mother (dozens of keys had stopped working) and brought in a digital piano (with weighted, hammer-style key feel).  So, Jennifer is playing the piano again.  

3. Her diarrhea is slowly improving.  Not yet gone, but less than last week.

4. She is doing some reading without her eye patch.  With a lot of effort, she can bring the double vision into single focus. She spends a few hours a day without the patch, trying to get more minutes of conjugate (non-double) vision.  We head back to WVU Eye Center on Friday for her second (monthly) ophthalmology follow-up appointment.  Don't expect much in terms of treatment, just getting some more data on her curve of recovery.

5. She's routinely walking a couple of miles a day, sometimes on the gravel road and sometimes up through our woods.  Yesterday, I took all of the disability equipment (a wheelchair, a walker, and a tub bench) to GoodWill for donation --hopefully, someone else will find those things useful which we no longer need.

Just a shout out to the Africa Area Regional Supervisor and Team Leaders who have picked up every ball which we dropped in September.  Life marches on without us and it's fantastic to see people step into the gap without needing to be asked. I am slowly beginning to reconnect with our Africa-based Serge leaders, but every conversation I have with them reveals what capable leaders we have.

Sunday, October 17, 2021

She’s a force of nature

 Yes, of course, we all know that Jennifer is a force of nature, but today I speak of Julia Myhre.

Julia flew out from Salt Lake City where she is studying for an MBA at the University of Utah to spend her week-long October break with us.  It’s the first time we have ever had the privilege of spending such an extended period with her alone.  What a delight.

The Aylestock family treasures a long tradition of making apple butter in the fall—a sweet thickened sort of apple sauce cooked down from raw apples in a massive copper kettle over the course of an entire day.  Having been grafted into this Aylestock tradition over 40 years ago (long before our marriage), my experience would say that this requires the labors of at least two or three whole families who contribute to the huge task of peeling, coring, slicing and dicing bushels (usually five bushels—like 150 pounds) of several varieties of apples to garner the final 11.5 gallons of apple butter which are jarred and divided up amongst the families.  

Julia fears no task and gathered a group of friends to make apple butter last year.   Undaunted by the prospect of her final result being compared to that of the memory of years gone by, she moved ahead strengthened by Voltaire’s maxim: Perfection is the enemy of good.  Her 2020 batch was declared a success by the matriarch of the clan and has been enjoyed throughout 2021.

When Julia finally locked in on visiting this week, we began to strategize for making apple butter, but colliding calendars prohibited any possible collaboration of families.  Again undaunted, Julia assured me that “Yes, we can!”  She managed to persuade her former housemate from the Greensboro Fellows Program, Bethany, to join up for the project.  And so she began to plan—a new apple peeler arrived in the mail.  We downsized our project and bought two bushels (Golden Delicous and Winesap) from Crazy Harry in Elkins.  Julia and Jennifer peeled and processed all the apples last Sunday.  Monday became Apple Butter Day.







Roughly five hours were spent stirring the apples in the copper kettle over the crackling fire with the seven foot long wooden paddle.  The final process of measuring the thick brown paste into boiled mason jars—Jennifer and I completely missed it because of a Neurosurgery follow-up appointment in Morgantown.  That appointment was as close to perfunctory as we could have hoped.  Jennifer did get to glimpse some images of her brain scans which she had not previously seen, but mostly the young neurosurgeon wanted to talk about her six week neurosurgical rotation at Mbarara University in Uganda.  We left with lots of reassurance that Jennifer is on an excellent trajectory in recovery—but also a reminder that her recovery may take up to a year.

We returned to find 36 jars of apple butter (the final tally totaled 4.5 gallons).  And Julia and Bethany added their own touch with a hints of ginger and nutmeg added to their batch—time will tell how the clan will judge that.

But beyond apple butter, every time I turned around Julia was baking sourdough, scones, or cookies.  She washed, she cleaned, she scrubbed.  She did a beautiful puzzle with Jennifer and Bethany (check out https://www.libertypuzzles.com/about —thanks to Bill & Sheila Marty!). And lots of walking and talking…

Jennifer continues to make progress.  The walker has been relegated to the garage.  She still holds on to a hand or arm of someone when outside walking but inside she moves around completely independently. She has grown more steady and more confident.  She attends Physical Therapy twice a week in Bridgeport.  Her therapists there are wonderful.  They astutely observe her weaknesses and then hone in with lots of creative exercises to strengthen and stabilize her.  They had her hopping over the rungs of a rope ladder laid on the ground this week.  She pedaled a mile on the stationery bike in 8 minutes. She bends, balances, lifts, steps…

With regard to her eye, she is now spending a couple of hours twice a day unpatched.  While before, she could hold her conjugate gaze for a few seconds, now it is for several minutes.  So there are longer and longer periods for which she has “single vision.”  She managed to read a few pages with binocular vision this week.  That is major progress.  

One final prayer request.  Jennifer has had persistent diarrhea since her discharge from rehab.  That’ s nearly three weeks.  She’s had a complete battery of stool tests which have all been negative.  It seems to be resolving — but very slowly.  She still has loose stools at least once or twice a day (down from 5-6x).  It’s draining.  We are hoping that this completely resolves this week.  The next step would be a gastroenterologist— which we’re hoping to avoid.


Saturday, October 09, 2021

More progress

 To my surprise, I see that it has been 5 days since I last posted any progress report.  It’s hard because the day-to-day progress is so subtle. At the end of the day, I think to myself, “Nothing much to report today.” Just that same old rhythm of Jennifer doing her little self-guided physical therapy on the floor with her yoga mat and her iPhone with the little videos she’s been instructed to imitate. Not surprisingly, she’s super serious about it.  Anything to get better. And while she’s never been a napped, now she regularly lays down in the mid-afternoon, partly because she’s exhausted by the slightest routine and partly because she has been convinced that it is part of the healing process.

So, it’s Saturday, and now it seems so normal that she moves freely without her walker.  When we go out of the house for a walk in the woods or on the gravel road, I hold her hand, but the walker is feeling quite neglected.  

The most exciting thing, however, is the incremental improvement in her right eye function.  In the morning (when her body and brain is most rested), she can intensely concentrate and focus on a distant object and consciously bring the two images of her double vision together into one image.  And as I watch her do this, her two eyes appear to be in normal conjugate gaze (aligned with one another).  When she first realized she could consciously do this, she could only accomplish it for a couple of seconds.  She would concentrate intensely (like Milly Bobby Brown does on Stranger Things when she wants to throw a car across the street) — and then almost collapse because of the effort. Now she can hold the images together for longer periods and is practicing doing this throughout the day.  She must always return to the eye patch (her pirate look) because the double vision is otherwise constant.  Her eyelid is less droopy and the pupil might be slightly less dilated than at the beginning—though this seems less dramatic to me.

The implications of this are HUGE!  If she continues on this trajectory, she has a real hope of leaving the double vision behind and avoiding corrective eye surgery—both for aligning the eyes and propping up the lid.  Here is a picture of her this morning (she is not going to be super happy about me posting this)—but it seems only fair to give this feedback to all of you who have prayed for her healing and will be so encouraged to see the evidence of it happening.


We continue to listen to Kate Bowler’s book No Cure for Being Human.  In our chapter today, she struggles with the possibility that her cancer might be in remission as a result of the immunotherapy.  But it is a strange place. She has been living in a fearful and hyper-vigilant state, wondering if she might die this year. It’s felt like that for us as well. In those early days, I wondered what would Jennifer be able to do in the coming months and years—walk, bathe, type, read, bike, swim?  All things that we took for granted in our “before the accident” life.  But now with these improvements, can we dare hope for a full recovery? For a normal life? Kate Bowler asks her psychotherapist, “Is there a reasonable time for me to stop being afraid?”  I don’t think we are there yet.

Kate Bowler’s academic niche in the Duke Divinity School is the Prosperity Gospel.  She doesn’t believe in it—she studies it.  It’s primarily an American phenomenon and she comes at if from a Canadian perspective.  Jennifer remarked today, that Bowler is a really a modern day Job.  She got colon cancer at age 35 and like Job’s friends, many want to assign some explanation of why she got this cancer — and like the prosperity gospel enthusiasts—how she can be rid of it and make the best of it.  At least she can go out ticking off a profligate Bucket List (of this she says… “The problem with aspirational lists, of course, is that they often skip the point entirely.  Instead of helping us grapple with our finitude, they have approximated infinity”). 

She struggles (and I think we all do) in light of the painful reality of not knowing the future and our outcome—and what that means for how we should then live? How do we live under the burden of not seeing our future? We wait. We walk. We pray. 

Monday, October 04, 2021

A long hike

Jennifer and I are listening to Kate Bowler read her newly released book (on Audible), No Cure for Being Human.  It’s her story of being diagnosed with Stage 4 colon cancer (metastatic — spread to her liver, etc) at age 35.  She’s a poetic, poignant writer — with a sense of humor (and we love her because she teaches in the Divinity School at Duke). We’re only 3 chapters in, but the pain of her diagnosis, the acute detail of the indignities, and the real and potential losses counted— all reverberate with familiarity around this little farmhouse in West Virginia. 

In Chapter 3 she talks about her time with a psychologist…

he tells me that he learned a secret from hikers of the Appalachian Trail. People who dare to attempt the whole trail face down more than six months of lugging their belongings over more than two thousand miles of daunting terrain. Because eager beginners start their trek carrying heavy packs brimming with tarps and tents, cooking utensils and flasks and granola bars, that first stop on this long journey is the most important one. The hiker is already starting to flag, but they have only just begun. They have reached a moment of decision, the moment to ask, “What can I set down?” The extra cooking pot. The fleece hoodie. “This will be a hard journey,” he says. “Is there anything you can set down?”

This challenge whirls around us.  What things do we need to set down?  How long will this journey of healing take?  Two thousand miles?  It feels like that today.  Jennifer and I had an animated discussion this evening (some fly on the wall might have called it an argument). What should we say to those who we supervise?  Do we set out some hypothetical timeline, imperfect though it may be? Or do we just ask for grace, live one day at a time and admit that we have no idea? The fact of the matter is the human penchant for control leads us to self-deception. We don’t order our steps.  But that realization may not come to light until our plans are turned upside down and emptied out on the pavement in tiny little pieces.  So tempting to try to put those little pieces back together.  

Kate Bowler again…

“It’s easy to imagine letting go when we forget that choices are luxuries, allowing us to maintain our illusion of control. But until those choices are plucked from our hands—someone dies, someone leaves, something breaks—we are only playing at surrender…

Ah, Surrender.  Set it down.  Still thinking—the pot or the hoodie…

Thursday, September 30, 2021

A little good news.


 Five more appointments since Monday.  Mostly pretty good news.

Tuesday- Speech Therapy (which includes a neuro-psych/cognition component).  The therapist repeated two mental status and cognitive tests in which Jennifer achieved perfect scores.  They saw no reason for her to need to return to this clinic — so she was discharged with no need for further follow up. Yay.

Thursday- Turns out that no one noticed that Jennifer had an abnormal urine culture result from the rehab facility (sample sent because of the long period of the in dwelling urinary catheter in the ICU).  We had to sort that out with  a primary care provider this morning.  They repeated the urinalysis which is still abnormal—and she is mildly symptomatic— so then there’s the trip to the pharmacy to pick up an antibiotic prescription.  

Then to follow-up with the Trauma Surgery Team in Morgantown (90 mins north).  A chest X-ray showed her pulmonary contusions and rib fractures are mostly healed — so she was released from any further follow-up here, too.

Then a quick drive 30mins south to Bridgeport to United Rehab for evaluations with Occupational Therapy (OT) and Physical Therapy (PT). In broad strokes, OT deals more with upper extremities issues and how they relate to issues of daily living (eating, dressing, bathing, etc) while PT deals more with lower extremities and ambulation.  Today, Jennifer demonstrated excellent upper extremity strength and dexterity—and was released from any further follow up with OT.  PT was a different story.  Jennifer has quite a bit of weakness in her legs and core (abdomen/back) which are the result of both the brain injury and being immobile for 3 weeks.  Additionally, balance is a real problem—a brain problem and also related to her right eye problem.  She needs support to walk—an arm to lean on, a walker or something like a doorframe or railing to steady herself.  We have twice weekly appointments —and lots of homework workout routines—for the coming month.  Pray for progress with her strength, ability to walk independently, and safety (freedom from falls).  Thanks.

Monday, September 27, 2021

First follow-up appt

 


The days since discharge from the rehab center have fallen into a certain rhythm.  Morning coffee with Luke, Abby and Jack.  Some sort of outing, usually organized by Luke, which involves getting Jennifer into the (rental) Jeep and going somewhere for a short walk.  Coming back for scrumptious food made by Abby—or sent by friends.  A nap for Jennifer.  Repeat.

Today, Luke flew back to Salt Lake City.  And we headed back to the WVU Medical Campus for our first outpatient follow-up with the ophthamologist.  Jennifer has a “third cranial nerve injury”—not sure exactly where the nerve is injured along its pathway from the midbrain to the eye, but it is a serious injury which has resulted in a droopy eyelid, a dilated pupil, and impaired ability to move the eye upwards, inwards, and downwards—which is causing double vision.  They were able to document some improvement in the eye movements since she was in the ICU, but we heard for the first time today that the wide dilatation of the pupil is likely to be a permanent outcome (it seems that the pupillary function is controlled by sympathetic fibers running along the outside of CNIII which are more vulnerable to traumatic injury). That is disappointing on a number of levels.  A permanently dilated pupil makes bright light uncomfortable.  The accommodation reflex of the eye which causes the lens to thicken bringing near objects into focus—will not be possible now.  And the asymmetric appearance of the eyes will be disconcerting to Jennifer.  

We are still asking for prayer for the extraocular muscle function (governing eye movements) to fully return.  That is our hope and prayer.  We will be returning monthly to the WVU Eye Center to monitor the progress—and they expect that the improvement may continue over the next 6-9 months.  There are surgical options we would rather avoid if recovery of function is inadequate.

This is hard news to hear.  We continue to be thankful for the preservation of Jennifer’s life and look forward to “seeing” how this unfolds for the God’s purposes.

Friday, September 24, 2021

Better days…

 


A friend asked yesterday, “How’s Jennifer doing?”  So, I started listing off all the things she did during the day:

- went for a ride in Luke & Abby’s rental Jeep up into the woods of our farm and walked about 200 yards (slowly and with support).

- came back and did some therapy exercises in the yard 

- napped for 2 hours

- morning and afternoon coffee

- evening shower

- sat on the front porch and listened to an audio book

- grilled salmon and pasta feast in the evening

- FaceTime with pretty much all of the immediate family.

Pretty good day. 

(Woke up this morning after 10 hours of sleep still feeling exhausted—did we over do it yesterday, maybe, but I think that it just the nature of her body saying I need more restorative, healing sleep).

These are all answers to prayer.  Thanks to all.

Wednesday, September 22, 2021

She's home (West Virginia home)...

 We have been desperately scheming how to get Jennifer home from rehab.

For reasons that are not entirely clear, the WV Dept of Health has shut down visitation to chronic care facilities--definitely related to COVID spikes in the state.

So, the facility recognized that Jennifer was a candidate for early release--and let her go even earlier than we expected.

Sigh of relief...







Tuesday, September 21, 2021

Prayers and Promises

Jennifer is coming home!

Case Manager just called to say discharge is scheduled for Thursday 10:30am!

Thank you for prayers.

This came after this morning's rainbow and spectacular watercolor paintings by God.





Monday, September 20, 2021

Rough Monday

 Rough day all around.  This is the brief version.

Caleb left this morning.  He’s been my right-hand man, my primary helper and support since this accident.  We’ve spent morning, noon and night together for nearly two weeks.  Tough to see him go.

I came into a meeting with some of the rehab staff expressing my strong wish up front that we get Jennifer out as soon as possible.  We see improvements and are thankful for the care—but there are serious deficiencies as well.  My request and comments about dissatisfaction with the lack of therapy over the weekend and lack of continuity of care were met we defensiveness and a bit of hostility.  I get it—I’ve called into question the value of the care she’s receiving, but we are at a point of advocating for Jennifer.  

Then—got news from Julia that her dog ran away in Salt Lake City this morning. She spent much of the day putting up posters in the neighborhood and at some of the trailheads.  A runner called having spotted the dog and she was recovered in the late afternoon. Yay.

Then—got news from Luke that their dog may have eaten some rat poison.  Seems like the dose may have been quite small —but that’s stressful.

Then—despite Abby’s willingness to always help out a colleague in need by covering shifts in the hospital—she cannot find anyone to cover her shifts later in the week.

So Prayer points.

1.  Pray we could extract Jennifer from rehab this week.  So she could have time with the kids here at the farm before they must return to Salt Lake City.

2.  Pray Abby can get someone to cover her shifts.

3.  Pray Luke and Abby’s dog sees no ill effects from a possible toxic ingestion.