Mariah’s Reemergence

Dad, wow!!!

A slow low-energy, tired day. Mariah did not sleep too well last night. In P.T. she gave the Lokomat another shot (2nd time this week). She was able to do only about one third the time she did on Tuesday but her accuracy with footwork actually improved since then. I was not privy to much of her other therapies as I needed some rest back at the Fisher house. When I came back at lunch time, Marsha was feeding her solid foods; Mariah ate shredded chicken. She seemed to really enjoy the normal diet. She wolfed down a slice of apple pie for dessert, same thing I ate.

Not wanting to be out and about much today, Bunny [Mariah’s nickname bestowed by brother Clay when a toddler. – Mark] stayed in bed for K.T. and stayed pretty stubborn. She was combatting both a tired physique as well as a low-mood day. She laughed, however, when her kinesiology therapist said he was going to go home and get his mower ready so she could mow his lawn. He said it was a push mower with three wheels. She laughed out loud.

Afterwards, Mariah stayed in bed and let me ask about her feelings. I asked cuz she seemed very sad. She nodded yes and nodded when I offered to talk about how I relate to feelings like throwing the towel in. She admitted she felt like giving up. Sometimes all the encouragement from so many folks can cause us to feel abnormal for wanting to give up once in a while.

Then we listened to Sublime on the CD player. Next, for the moment of all moments…..Mariah sat up, using her elbow to push up, put her arms around me and gave me the most incredible, loving, real, compassionate hug I have ever had in my life. I cried while we held each other, she nodded that she was ok with it. After a few moments I set her back down. She waited 30 seconds and lifted herself up again and gave me another embrace.

Next Mariah sat up and then wanted me to help her stand. This is one of those moments of hesitancy cuz I don’t want to endanger Mariah. However, when Bunny is ready she is ready. Mariah used mostly her own strength with me guiding, and she stood up and held me again for a full-fledged hug. She gave me a kiss on the shoulder and rubbed my back. I have never felt such a thing! We held each other for about half a minute or so before she nudged me to let me know she wanted to lay down.

I don’t really have any way of conveying the feelings, the emotions, or the most powerful and loving embrace I can remember feeling for a looong time.

Love you, dad.

Clay

[Thank you, Clay. Your loving presence in our lives is invaluable. I love you, too. – Dad]

Mariah’s mood today has been somewhat “somber”. Perhaps partially due to the fact that her P.T. experience this morning began with a run at the “NuWalk” machine. Much like a rowing machine involving both arms and both feet in coordination, she did a good job but it jostled her head around quite a bit with no assisted support. She did not let the dizziness that ensued keep her from her workout. She moved right along to balancing on the mat and stayed patient and determined until she was able to sit on her own and stabilize.

Mariah is on day one of her new diet, “mechanical soft” food. She seems appreciative of the more normal food (as normal as hospital cafeteria food gets, right?) and is one more giant bunny-leap in the direction toward solid food. She combined O.T. with lunch time and worked toward feeding herself with less assistance.

Mariah also worked with the new and improved “Dynavox” machine which allows her to communicate using a variety of approaches. She has her own machine on the way which she will then have for a daily basis. Reports from the team are that her accuracy and functionality improvements since last weekend are definitely apparent, and we are all so pleased.

The only huge grin I saw from Mariah was at my expense, and quite frankly my embarassment. After O.T. Mariah was exhausted and let me know she wanted me to put her back in bed from the chair, and I did so with ease. However, after her Dynavox (Speech Therapy) appointment was over at 1:30 she was again very tired and I hung her up putting her back to bed….on her chair, literally. I failed to unbuckle her seat belt before trying to help her stand up and nearly put her and her wheelchair in bed before figuring it out. Mariah, uninjured, grinned and probably had a good laugh at my expense. I finally got her in bed and for the time being she seems to have revoked my privilege of helping her get into to bed. Haha. Oh well, better I laugh to than give myself a hard time.

I am not good at falling short, but I know there is no place I would rather be than right here with Mariah as she continues to grow, heal, and move toward her new self a step at a time.

– Clay

1:30 pm (reported by Clay)

Mariah woke to me singing her an old circle chant (Dona Nobis Pacem). She had a good P.T. where she set a new record for meters/per 15 minutes: 400+. Also, the Lokomat machine was dropped down to just 30% assistance level for part of her workout. When Stewart asked if her harness was comfortable after tightening it, she mouthed “good” instead of nodding. …always pushing for that next achievement! She also is increasing her motor skills in grasping different shapes in O.T. Shannon said she is improving since last week.

And for the big breakthrough of the day Mariah is eating cookies!!! Marsha said the expression on her face after that cookie should be in Webster’s under “pleasure” Wish I had a picture. I am so glad I was there for the re-initiation of the cookie monster.

Tomorrow they will try her on a soft mechanical diet, which is pretty much regular food chopped up. Moving up, moving on, Mariah’s determination continues to push her recovery at a strong and impressive rate. We are all so proud.

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9:30 am (reported by Clay Steinwinter)

Today for a change I am writing from the leisure room at the VA hospital in Richmond. This is day two of my week visit with my sister, Mariah. She has improved sooo much since I saw her a few weeks ago. Yesterday we watched a “Married with Children” marathon (courtesy of Izzy, thank yoouuu!!) for ummmm about four hours and laughed together.

In the evening, volunteers from Halifax came with a plate of fresh canteloupe, homemade poundcake, a sausage biscuit, and a cup of pepsi. Mariah made a huge grin (I mean HUGE) and a sucking face while leaning toward the pepsi. Being my first evening, I wasn’t sure what type of diet she’s on now. Well, long story short, she managed to suck down about a third of the cup before I stopped her and said I needed to check with the nurse. Upon asking her if that wasn’t kosher and “is the nurse gonna bust me?” she grinned and shook her left foot to tell me, “yes. you are busted.”

Danggit, thanks big sis for looking out for me…. haha, some things never change.

Anyway, I am staying the week in the beautiful Fisher House, newly opened on campus for family members of the patients here at the veterans hospital. The facility is gorgeous and should provide me with some much-needed rest and respite from my recently anxiety-filled life down in Raleigh. Please continue your prayers for Mariah, my family, and me. They are helping us greatly and the miraculous improvement I am seeing today is proof to me that God is, and always will be, with us every step of the way

Love and Light,

Clay

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8:00 am (posted by Dad)

I’m spending the week in Boston catching up on business and will return to Richmond next Monday, August 4. In the meantime, Mariah’s brother, Clay, is on reemergence watch and will offer daily updates in this space.

More soon.

– Mark

Friday was busy.

One of Mariah’s commanders and a staunch supporter, Colonel Severin, was already with her when I arrived at 8:15 am. (He usually beat me to the punch at Walter Reed, too.) He received radiant smiles as a reward for the drive down from DC.

In PT, Mariah walked about 30 feet using a walker and assistance from her therapist. That was followed by trunk strength (sitting up) exercises and a raft of other workout moves, drawing a number of “Slow down, Mariah” prompts from the therapist. (Mariah’s friends know that she’s not fluent in Slowdown.)

General Cheek and Dad (McGuire VAMC, 7/25/08)

A short while later, US Army Brigadier General Cheek, Director of the Warrior Care and Transition Office, arrived for a tour of the facility. He asked me what had happened to my daughter. I replied that she suffered a stroke while mountain climbing in Peru. He asked whether I was referring to Captain Kochavi whom he had heard about while she was at Walter Reed. Small world. He gave me his card and a beautiful coin, a large red triangle, to honor Mariah’s courage.

Later in the morning, Mariah spelled part of her name (“MariaoKo”) with only one error on a prototype assisted communication setup. Her speech and occupational therapists had teamed up to find the right combination of switches, computers, software, and settings, allowing Mariah to tap her left foot to control a selection box on a computer screen. Just a week ago, she wasn’t able to initiate a tapping motion quickly enough to manage the selector. But with improved motor function and some tweaking of the system, it’s now very close to functional. Her therapist will be testing the newest version of the computer with her next week.

Maybe it’s time to start taking bets on what Mariah’s first words will be. I’ve got $5 on “You don’t have to shout; I’m not deaf.”

Then the real fun began. Mariah ate an ENTIRE TRAY of food for lunch in the patient dining room. Pureed savory chicken, mashed potatoes and gravy, applesauce, vanilla pudding, and a container of milk. She was ravenous and devoured every scrap on her plate. In fact, while wiping her mouth, my finger brushed her lip and she snapped at it. I pulled back horrified while she laughed. I suspect some of the other patients may have been a little annoyed by all the shouting and celebrating while trying to watch the TV, but maybe they understood.

Molly and Mariah (McGuire VAMC, 7/25/08)

Mariah’s good friend, Molly, who had been with her on the mountain in Peru, came for a visit on her way from North Carolina to New England before she heads for vet school in Philadelphia. Molly gave Mariah gifts from her recent visit to Cairo, including a beautiful silver scarf she wanted to wear.

The afternoon was a little rough for Dad, as it came time for me to depart for Boston. At 2:35 and with a cab arriving at 2:45, the ward was in a bit of a surreal hush over an impending visit by the Secretary of the Navy, Mariah was having a bad headache (she actually asked for Percocet which she usually shuns), and there was some confusion around whether the docs had left an ok for the drug. Of course, it would all get handled, but I hated saying goodbye to Mariah with things so in flux.

She offered me the pencil drawing she had just made (“See the snowman?” the recreational therapist asked. “Someday this will be worth a million dollars.”) We hugged, I gave her a kiss and a promise to call every day until I return on August 4. She gave a tearful nod, gazed at me stoically, and off I went.

Mariah and Dad (McGuire VAMC, 7/25/08)

– Mark

Occupational therapy is where a person masters some of the many routine things most of us do every day without much thought: washing and drying our face and hands, and brushing our hair for example. Here’s a glimpse of Mariah hard at work. (Click to enlarge.)

The VA – compliments of angels Zachary and Elizabeth Fisher – makes sure that Mariah’s mom, brother, and I are comfortable and close by when we’re in Richmond so we can focus on helping Mariah reemerge. This is the recently opened Fisher House where families can stay on the hospital grounds for extended periods.

Fisher House family residence. (McGuire VAMC, 7/24/08)

At the end of the day, Mariah and I watched Jeopardy without the sound. Our comic responses to the answers got us laughing so hard the nurse came in to see what was right. Her throaty, breathy laughter is about the sweetest sound imaginable.

Shortly before leaving for the night, she looked carefully at pictures of her stored on my camera. She appeared especially thoughtful on the shots where she looked happy after some accomplishment. Many of you know that Mariah strives for perfection. Reemerging is requiring lots of stops along the way that sometimes appear to frustrate Mariah. This time, she nodded when asked whether she’s taking pleasure from small successes.

Still Army strong.

– Mark

A focus today was developing Mariah’s trunk strength. She began and ended her sessions with exercises designed to help her sit up unaided for more than a minute, an unthinkable feat one week ago. Here are the results from 3:30 in the afternoon (click to enlarge):

Under her speech therapist’s watchful eye, she also ate an entire cup of chocolate pudding and drank thickened apple juice through a straw. And in the evening, I was allowed to give her several spoonfuls of ice chips.

Best of all, while mouthing words with exagerated movements, her therapist asked her which four languages she speaks. “Hebrew” was going to be a snap for her, because she’s great at drawing her lips back and exposing her teeth (for “he”) and at pursing and rounding her lips (for “brew”). Facing her therapist, Mariah indeed offered a clear “he” movement. But on “brew”, the movement was accompanied by a breathy syllable that I was able to hear across the room. The therapist did a hilarious double take, I came up out of my chair, and Mariah burst into whispered but audible laughter.

(Now that she can sit up and say “brew”, can watching the Red Sox at her favorite sports bar be far behind? Just kidding. Mariah, as most of you know, doesn’t drink. She did, however, watch the Sox with Diana and me at Fenway this spring.) 🙂

Here’s Mariah with a military friend from DC, Kelly Casey, outside the hospital during her mid-day break.

Mariah and Kelly relax outdoors during her mid-day break. (McGuire VAMC, 7/23/08)

– Mark

Today’s Notes:

Started with a visit from the docs on rounds. Mariah was pronounced “medically excellent” – no issues needing attention. That’s a nice way to start one’s day.

Then Mariah and the Lokomat became as one. Under the care of four physical therapists, she strode over 300 meters with the machine providing less than 50% of the support for her body weight and the guidance for her gait. (Click below to see larger images.)

In addition to all the usual exercises and workouts during her various therapy sessions, she held a spoon and fed herself applesauce from a cup, drew on paper with a pencil, and propelled her own wheelchair using walking motion with her feet.

Mariah’s been experiencing some double vision. She can see fine out of each eye, but she has trouble making them work in harmony. A vision therapist has joined her team and is suggesting some approaches for her. The unit medical director visited us in her room in the evening while we were watching a video and asked if she’d like to try wearing an eyepatch during some activities, like watching TV. She agreed and indicated it was an improvement. She laughed when the doc told her another patient had dubbed wearing the patch “pirate therapy”.

I think it’s working because during one of the shadow picture sequences in an Austin Powers flick, she laughed so hard she made several sounds with her voice.

That’s a nice way to end one’s day.

– Mark

Here’s Mariah and Bogart, famous therapy Schnauzer.

Mariah and Bogart (McGuire VAMC, 7/21/08)

Excellent progress. Mariah’s strength and control in both arms and hands have improved markedly in just the last few days. Throughout the day, she rubbed her face with both of her hands, and while lying down she repeatedly clasped her hands together and stretched her arms way up and over her head.

She walked about 60 feet between parallel bars with considerable assistance from her physical therapist. She took enormous strides, 7 league boot-style, nearly bowling Stewart over more than once. Her scheduled bout with the Lokomat – aka Robo-Cop – was postponed until tomorrow.

In speech, she munched several ice chips with a satisfying crunch and drank nectar-consistency apple juice from a cup. She also practiced mouthing words with exaggerated movement and letting us guess. “What do you want to tell your dad?” the therapist prompted. “I love you” was her response, followed by the sign language hand sign

for good measure. (What’s the HTML code for the sound of a heart aching?)

I missed most of occupational therapy to meet with the Army liaison, the social worker, and to check into the just-opened family residence on the hospital grounds, but before I left Mariah was sitting at the sink in her room washing her face with a washcloth.

Our habit at lunchtime is to sit outdoors on the shaded patio and enjoy the breeze. Mariah napped – or at least closed her eyes – while I joined a conference call for my work. She awoke at one point, and a woman on the call suggested I ask Mariah for her opinion as we were in need of a fresh perspective. I reported the request to Mariah and she grinned, nodded, and went back to her nap. (I had a boss on one job who was less responsive than that.)

In kinesiology she took a beanbag from the therapist’s hand and returned it using each of her hands in turn. Again, I had to duck out to join a conference call for work, so who knows what other amazing feats are going unreported?

In the evening, Bogart visited, we watched Crimson Tide, and then the nurses chased me out so they give her a shower. I stuck my head back in at 10:30 and she was slumbering peacefully. Sweet dreams, Mariah.

– Mark

(Note. Some readers have expressed concern that Mariah might not want her pictures and story told in this blog. FWIW, she has expressed approval of the blog concept several times, and she specifically approved the pic above for this post. I try to be sensitive to what Mariah might not want made public, but nevertheless, I’ll be a bit less detailed and graphic in descriptions of her reemergence. If you have thoughts about this, please post a comment and let us know.)

What follows is the text of a guided meditation written for Mariah by Nicole Kierein. Nicole is Diana’s eldest daughter. She, her husband Zach, and their 2-year-old girl, Eva, have been my generous and gracious hosts during my stays in DC. Click on the player control near the title below to hear an audio version of the meditation. Please excuse the living room production quality. We’re all learning as we go.

– Mark

Mariah’s Meditation

(Click here to listen)

By Nicole Kierein
July 20, 2008

Mariah, Mariah Papaya, Bunny, Squeege, Punker, my beautiful baby girl ….  You are precious, elegant, graceful, brilliant, and your presence commands great respect.  Your life is changing…you are transforming…you are reemerging.

I love you… your mom loves you… Clay loves you…  Grandma loves you… Diana loves you… Sarah loves you… Molly loves you… Coli, Zach & Eva love you… Aunt Judy, Amy & Holly love you… Uncle Carl loves you… Chai loves you… your entire family loves you… your friends love you… you love yourself.

This love is very powerful…your spirit is very powerful…your mind is powerful…your body is powerful…your brain is very powerful.

Your brain is privileged.  It has achieved amazing feats.  Few brains have accomplished what yours already has.  It has never been faced with a challenge like this one.  It has grown and flourished and reached new territories and new heights many times in your life, but it has never had to rebuild part of itself.  But your great brain, of all brains, is more than capable of confronting and overcoming this trial.

Your brain is mending itself.  It knows what it needs and what it needs to do, and triumphantly oversees its own progress.  Each day as you provide it with input, challenge it, and exercise it, it is consuming all of this experience with ferocity.  When its cup is full, it calms and retreats into itself for awhile.  While you fuel it with sleep, it carefully, delicately, deliberately, directively, acutely, intensely works.  Its work is beautiful, like a spider crafting a new web.

Deep, nestled in the center of your brain stem, the crafting is unfolding.  There, your neurons’ axons are reaching out to the synapses where they used to find dendrites welcoming their signals.  And your neurons’ dendrites are open and eager, waiting for the signals they used to receive.  This longing and this urging are great forces and they are pulling the web into new patterns.  New branches are forming to bridge the gaps.  Each day, you are showing them where the gaps are and helping them to discover where the repair work needs to happen.  And each day you spur them into action by demanding their old familiar results.  This information is invaluable to them and they use it to work while you sleep.  They carefully explore the gaps that you reveal to them and meticulously create tendrils that form the basis for new full-strength connections.  At times, they encounter barriers, walls or chasms that were not there before.  Ever determined, they creep relentlessly like vines around, over, under, and through to restore their pathways and meet their goals.

As you sleep, you can almost feel this happening.  You can sense the deep labors that your cells are undertaking and you are proud of what they are already achieving.  They repay you for the care you are taking of them by showing you glimpses of what they are working on.  Their successes are evident in the vocal outbursts and amazing movements you have made so far, like an outlet being plugged in while the light switch is turned on, and the bulb flickers as the plug is secured into its place.  Your brain is forming the plugs and the outlets so that the connections fit and the electrical pulses can surge through their courses to their destinations.

All of this is occurring in hundreds of cells, in synchronization, in a symphony.  The music is staggeringly powerful, and it is flowing throughout your brain and body.  Your extraordinary and heroic spirit has the good fortune to be housed in a phenomenally perfect physical body.  And it is this same spirit that is compelling this same mighty body to heal itself and to triumph.

Friday’s speech therapy was challenging and rewarding.  For the first hour, she tried several types of assisted communication devices, none of which were perfect and all of which hold some promise. A common approach is to use a computer screen to display a matrix of letters, words, or pictures. The computer slowly “scans” down the rows, highlighting them one at a time, and the user depresses or squeezes a switch when the desired row is highlighted. Then scanning happens along the row in a similar fashion. But Mariah has trouble initiating movement quickly, so halting a scan at just the right moment is sometimes hard for her. The therapist proposed to try a 2-switch approach: one to allow her to advance the scan one step at a time, and the second to select the highlighted object.

For the second hour, she endured a swallow study, ingesting different types of liquid and semi-liquid food laced with barium so as to be visible on an X-ray movie. The first test resulted in liquid going down the wrong pipe and Mariah coughing it up and onto the technicians and therapists huddled about her. (When asked later about her “epic hurl”, she laughs with gusto.) Subsequent trials went better, and the decision was made to give her ice chips and nectar-like liquids next week. Inspired by a story about the delectable sausage Mariah ate at a Red Sox game this spring, her therapist promised her pureed bratwurst at the earliest opportunity. Hmm…

Mariah and Chai Tango (Ft. Meade, 5/2008)

Back in her room and waiting for the kinesiologist, we danced to disco music from her wheelchair, jitterbugging and spinning, arms akimbo and her face all lit up with laughter. That’s the picture I’m holding in my heart as I work from DC this weekend while her Mom serves as her “non-medical attendant” (one a time, please).

Keep dancing, Mariah, our hurling dervish.

– Dad