Amanda

March 12, 2006

The Second Anniversary of Amanda’s Accident

It is hard to believe that two years have gone by since that fateful moment when Amanda slipped and fell off the roof of her father’s house. Many mixed  emotions accompany this anniversary. We had hoped that Amanda would have regained more function by this time—it is easy to feel discouraged. But at the same time, there have been consistent improvements along the way—although small—that enable us to remain encouraged. Amanda’s warm smiles and sweet laughter fills our hearts with joy and wonder every day.

The world of Traumatic Brain Injuries is a murky, unpredictable one. No two injuries are exactly alike and the healing process is different for every individual. What are some things that can positively affect recovery? Repetition and over-learning of tasks, triggering old familiar memories, stimulation of the senses, keeping muscles flexible and bones strong, and plenty of positive and loving interaction with people who care.

This update is dedicated to the many people who play this important role in Amanda’s life: the folks involved in her routine care; the folks who help out with equipment and home modification; and the folks who stop by and visit periodically. It is because of this compassionate support that Amanda is as healthy and thriving as she is today.

For two years now, Amanda has attended Lowrance Middle School here in Winston-Salem. She is in a classroom with about nine other students who are classified as multi-handicapped or severe and profoundly disabled. Teacher Leslie Anders, the school nurse, and the assistants have their hands full with this class! They are very attentive and devoted to “their children.” At school, Amanda is practicing pushing a switch to respond to questions. Ms. Anders believes that Amanda is taking in more and more at school all the time and is reacting increasingly to activities in the classroom. We are hoping to get set up at home to try using switches here, where we can experiment with various positions. This is our primary goal for Amanda this year—to be able to communicate in some fashion. (Oh, how we wish we could hear that adorable voice of hers again!)

Amanda travels to and from school on a bus equipped with a special lift for wheelchair passengers. Most of the kids on the bus are regular students—only Amanda and one other little boy are in wheelchairs. Amanda is READY to get out of her wheelchair by the time she gets home! Ashley, our newest CNA, takes good care of Amanda in the afternoons and lavishes lots of attention on her.

Every two weeks, Amanda goes to see Boyd Bailey, for her acupuncture treatment. This is a pleasurable outing for Amanda—she just adores Boyd and seems to tolerate the acupuncture needles well. We still attribute much of Amanda’s cheerful disposition to these treatments—it was after her very first acupuncture session that she began to smile! A few times a year we travel to Asheville and take Amanda to see Cissy Majebe, who first started Amanda’s acupuncture program, for follow-up sessions. Amanda has also been taking an herbal remedy, for over six months now, that really does seem to be increasing her alertness. Since beginning the herbs, Amanda has consistently demonstrated improved responsiveness and eye tracking. 

One of the greatest challenges of Amanda’s care has continued to be the bathing situation. After exploring various options and considering how each would accommodate Amanda as she ages and grows, we finally made the decision to build a handicapped-accessible bathroom. Our home has a semi-finished basement with a yucky bathroom that needed renovating. We plan to fix this area up and create a space that can function as an apartment for Amanda, if needed, in the future. Fortunately, Amanda can access both levels of this house. So, for now, she can spend “bath days” downstairs and the rest of her time upstairs. The bathroom we are building will have a large shower that Amanda can be rolled into, while in her shower chair.

Of course, no “home improvement projects” can ever be simple—right? One thing has led to another and another…and so on! Before renovation of the basement could take place, water damage and drainage issues had to be addressed. So, in came the backhoe and out came the dirt! We had to dig out around the foundation of the house and waterproof the walls, all the way to the footer. This has now been completed, but in the process our front yard, driveway and side porch got destroyed! Bring on the landscaper!

Greg has worked countless hours on this complex project. With only weekends and an occasional night to work, it seemed that Amanda would be an old woman by the time the bathroom was complete! Thank goodness for family. Cynthia’s cousin, Paul, has come up several times from Charlotte to contribute his carpentry expertise to the cause. And last week, Grandpa Arnie, Uncle Kevin and Uncle Dan came in from Ohio and Asheville to help out. From morning ‘til late at night, “the boys” hammered and sawed and tiled and dry walled.  Uncle Arnie and Uncle Jeff, who own a custom-cabinetry business in Ohio, donated a beautiful bathroom vanity and cabinet. The bathroom isn’t done yet (sigh) but MUCH progress was made! Thanks, guys!

One step at a time. Every little bit helps. Every contribution and every kindness counts. Amanda benefits from it all. From the visitors who come by to read to her and talk, to the folks who share their pets—Amanda is delighted. Every card, every email, every comment posted on the website is treasured. One thing that has amazed us has been the days when we feel most disheartened and overwhelmed, someone—somehow—just when we really need it, reaches out and lets us know that they care! Suddenly, our spirits are lifted and we know we can pull through. We are constantly reminded of the inherent good in people. This is the beauty of life with Amanda.   

“It is only with heart that one can see rightly; what is essential is invisible to the eye.” --Antoine de Saint Exupery

Tuesday, November 15, 2005

Oh my, how time flies! Amanda celebrated her birthday on September 18^th and is now 13 years old. A small gathering of family and friends helped her commemorate the occasion.

Amanda’s brother, Zach, turned 14 the day before her birthday. Zach has really matured (and grown!) recently and is more and more asked to help out with Amanda. Amanda adores her brother and when he walks in the room, talking (in his new deep voice), her face lights up with smiles. Many evenings Zach reads to Amanda and he regularly prays for her recovery.

Amanda is now in the seventh grade and attends Hanes-Lowrance Middle School, here in Winston-Salem. The teachers and staff all dote on her and comment on her increasing alertness and smiles. Amanda seems to particularly enjoy musical activities, circle time, and working with communicating by pressing a switch. This is our fondest wish at this time—for Amanda to begin to communicate, in some fashion.

Life remains busy! Many details have been addressed to improve the quality of Amanda’s life. She visited a nutritionist at Wake Forest’s Baptist Hospital this summer and now takes a “whole food” formula for half of her feeds. She has also been given juices, on a daily basis, since the summer. In September, she got a special “backpack pump” that fits right on to her wheelchair. This makes travel with Amanda—if it overlaps meal time—more convenient and more socially acceptable.

Efforts to get the proper “home-adaptation” equipment for Amanda have proven to be challenging, but little by little, progress is being made. Last week, her Hoyer Lift was finally delivered, but we are awaiting some parts before it can be used. We are still determining the safest and most efficient bathing situation. A shower-transfer-chair system is costly and may not function well as she grows. Another option being considered is modifying the master bathroom to make a large roll-in shower. So many things to think about!

Equipment has become a top priority lately. Amanda has grown taller and now weighs 75 lbs. Tending to her needs has become physically demanding, and there have been many a sore back for those who care for her of late!  A new daybed has just been set up in the den, so Amanda now has a comfortable place to rest that is “out in the heart of the action” and is high enough and wide enough to position her, and change her, easily. A massage table was also acquired, recently, so Amanda can benefit from some massage. Her muscles tend to become stiff, due to her mild posturing and, just simply, lack of use. (It has been used to soothe a few aching backs, too!) 

Amanda’s therapy program has undergone some changes, since the school year began. She now only receives PT and OT at home once a week. This means that the family and the CNA’s now do PT and OT exercises with Amanda throughout the week. She is frequently up in her stander these days—this provides Amanda with a cardiovascular workout, along with much-needed weight bearing exercise.

Amanda continues to receive acupuncture treatments—about every week and a half. As a result of these treatments, Amanda appears to be more relaxed and in good spirits. She really seems to enjoy her acupuncture sessions, and is full of giggles and smiles while there. In addition to the acupuncture, we have experimented, just recently, with an herbal remedy for Amanda that is supposed to improve her blood circulation, and hopefully reduce any blood stagnation that resulted from her head injury. It is too soon to tell if the herbs are of benefit, but, within the last two weeks, almost everyone involved with Amanda has commented on an improved alertness and responsiveness— remarks have been made by therapists, CNA’s, and teachers. She is definitely tracking more with her eyes and will often move her head to follow a person’s movements in the room. Way to go, Amanda!

Amanda will soon embark on a major journey. We are traveling with Amanda—in the big van (gas prices-yikes!)—to Delphos, Ohio to visit her dad’s family for Thanksgiving! This will be the first trip the family has made with Amanda that is longer than a few hours. The travel time is usually about 9 hours, but we expect it to take longer since we will need to make frequent stops to reposition Amanda and tend to her needs. Amanda has grandparents, aunts, uncles and (many) cousins who can’t wait to see her. Should be quite an adventure!

As this Thanksgiving Day approaches, the Mohler family feels very, very blessed. We continue to have high hopes for Amanda, and are doing our best to foster improvements. No matter how small, each little step is advancement, and we rejoice! Please continue to keep Amanda in your prayers, and have a wonderful holiday.

"The Lord's love never ends; his mercies never stop. They are new every morning; Lord, your loyalty is great. I say to myself, 'The Lord is mine, so I hope in him.' The Lord is good to those who hope in him, to those who seek him." --Lamentations 3:22-25

Sunday, August 14, 2005

Wow! What a summer! Amanda and her family have been very busy!

First, Dad and Cynthia got married in June in the backyard of the old house. Friends, relatives, and neighbors came to help celebrate. Grandma Josie and Grandpa Arnie, down from Ohio, took care of Amanda while the newlyweds were on their honeymoon. Mom checked in everyday, and all went smoothly.

Soon afterwards, the Big Move took place! Dad, Cynthia, Amanda and Zach (and Tiger and Anna-the cats) all moved into a new house on Turkey Hill Road in Winston-Salem. The house needed a great deal of work, mostly painting and yard work. Dad and Cynthia have been hustling and bustling and are finally getting the family settled in.

The move has been worth the effort. The new house is a ranch-style with all the main living space on one level, plus a basement and attic. A driveway pulls right up to the kitchen-perfect for bringing Amanda in and out to the van. Hardwood floors and spacious rooms make wheelchair movement easy. The neighborhood has nice streets, with (mostly) gentle hills, that are good for taking Amanda on strolls. The house is minutes away from shopping, doctors, and therapy appointments, and is also closer to Amanda’s mom, who comes over regularly to help out.

Amanda recently spent two weeks in Asheville,staying at her Aunt Lisa and Uncle Dan’s house. Her little cousins, Katie and Audrey, gave Amanda a lot of attention and love while she was there. In Asheville, Amanda received acupuncture treatments almost everyday, and had several sessions of cranial sacral therapy, as well. Now, back in Winston, Amanda will continue these treatments, about once a week, with local therapists.

Speaking of therapists, Amanda has received in-home physical and occupational therapy twice a week, since coming home from the hospital last June. Her therapists, Wendy and Debbie, are like members of the  family now! Amanda also has been visited twice a week, this summer, by a speech therapist, who is working on increasing Amanda’s swallowing abilities.

Keeping Amanda in good shape and good health can be challenging. The family has been fortunate to find two wonderful Certified Nursing Aides who do an excellent job helping take care of Amanda. Katie helps with Amanda every day during the week, and Karen provides some respite on the weekends. Their warmth, kindness, and efficient ways have certainly contributed to Amanda’s state of well-being. Luckily, Amanda is so sweet and adorable, that it is a pleasure to tend to her needs.

Another exciting outcome of the move has been the ability to move forward on equipment needs. We had held off on some equipment purchases until we knew exactly what space we would have to work in. Fortunately, we now have plenty of space to store her (rather large) equipment! We have her wheelchair, special-needs stroller, stander, massage table, and exercise ball, and now we will be adding a shower-transfer chair and a Hoyer Lift. Folks came out from Healthcare Equipment, several times this summer, to show us various equipment choices.

Last week, Mom and Cynthia took Amanda to a local therapeutic riding stable. Amanda loves animals and was becoming quite the horsewoman before her accident. At the stable, Amanda had a chance to pet some horses and she really seemed to enjoy stroking their noses. We tried sitting her on a modified saddle, perched upon a barrel, but Amanda did not tolerate this very well-it seemed to aggravate her hip. It is possible that she may not be physically able to ride safely upon a horse, but we will continue to explore this as an option for Amanda.

All in all, Amanda is doing very well. She is in good health and on only a few medications. We can see very subtle changes occurring, such as increases in eye contact, eye tracking, and awareness of her surroundings. Amanda would benefit from more interaction with friends-please come by and visit her at her new house. Just call us at 760-0639 and let us know when you can come by!

May your kindness, Lord, be upon us; we have put our hope in You. -- Psalm 33:22

Sunday, May 15, 2005   5:00 pm

It is a peaceful, rainy Sunday afternoon and Amanda is stretched out on the floor, getting a foot rub. Life has been very hectic, lately, and Amanda and her family are enjoying the chance to relax and slow down a little. We even found time to update the website’s photo gallery—take a look!

After much deliberation, the decision was made to move from Dad’s house. The set up of the house is prohibitive to Amanda’s best care. The main living space—living room, kitchen, and bedrooms—are all up a full flight of stairs. Every day, schedules and activities have to be coordinated around getting Amanda up and down the stairs. It is impossible to bring her wheelchair chair up on a regular basis, so Amanda can’t pull up and join the family at the dinner table or practice using communication switches at home. Installing an elevator was considered, but it seemed that the best solution would be a new home with good access and space for Amanda and her equipment. So, this last month has been a blur of home improvement projects and house hunting!

This month we sold our house and put an offer on another house. Hopefully, if all goes well, we will be moving at the end of June! We are sad to leave our lovely home and friendly neighborhood, but prefer to look ahead and consider this move a fresh start. We have found a house that is more convenient to the many doctor and therapy appointments, has a floor plan that should accommodate Amanda’s needs, and also has potential for adapting to the family’s long-range requirements. Please pray that Amanda and her family can make a smooth transition!

Our neighborhood here in Pfafftown has been a wonderful place to call home. We are very grateful for the generous help that so many of our neighbors have given since Amanda’s accident. Neighbors have pitched in and furnished a guest room for visiting family. They stayed with Amanda, and her brother, Zach, on numerous occasions. They have driven Zach to school, if we needed to stay home with Amanda. They’ve brought us food and mowed our lawn. They’ve helped us assemble packs of her cards for fund-raisers. The folks that live in Mill Run are wonderful! We’ll miss you!

One neighbor really touched our hearts with his kindness, recently. His name is Ben Ngo and he is only nine years old. Last month, on his birthday, Ben displayed sensitivity and unselfishness beyond his years. When it came time to plan his birthday party, Ben surprised his parents by stating that instead of his guests bringing him presents, his wish was that they would bring donations for his neighbor, Amanda. Wow! A very special boy! Amanda stopped by the birthday party and had a chance to meet Ben’s friends and family. Ben’s bigheartedness has helped spread Amanda’s story and, as a result, over $600 was contributed to the Amanda Mohler Fund! Thank you, Ben!

The unselfish effort to bring cheer on others will be the beginning of a happier life for ourselves. – Helen Keller

March 12, 2005

The First Anniversary of Amanda’s Accident—A Reflection

One year ago today, Amanda fell off the roof of my house and an unimaginable journey began—not only for her, but for the entire family.

Last night, Amanda sat in my lap as I read to her from Dr. Seuss’s “Oh, The Places You’ll Go!” As I read, the message of this classic book touched me profoundly. It related so well to Amanda’s life, especially all she’s been through this past year.

“You’ll be on your way up!

You’ll be seeing great sights!

You’ll join the high fliers

Who soar to great heights!”

This certainly describes where Amanda was at a year ago. Her life was full of promise and excitement! The very weekend of the accident Amanda was to have had her first soccer game of the season, and she was all set up with new speed skates for the local speed-skating team she was on. She was practicing with girlfriends from school to put on a little musical skit during chapel. Middle school was just around the corner and Amanda was already looking forward to joining the track team in sixth grade. Yes, life was good!

“I’m sorry to say so

but, sadly, it’s true

that Bang-ups

and Hang-ups

can happen to you.

You can get all hung up

In a prickle-ly perch

And your gang will fly on.

You’ll be left in a lurch.

You’ll come down from the Lurch

With an unpleasant bump.

And chances are, then,

That you’ll be in a Slump.

And when you’re in a Slump,

You’re not in for much fun.

Un-slumping yourself

Is not easily done.”

Oh boy…what a slump. What a sad, sad time the first half of this year was. Grueling days and nights at the hospital…then at Charlotte’s Institute of Rehabilitation. Amanda was non-responsive and often seemed in distress. It was an excruciatingly painful time for us all.

Then there was the period of adjustment when Amanda came home—a whole new way of living. So much to learn! So many things to research and explore…simply overwhelming! So much bureaucracy! The medical community, so valuable to Amanda in the past, has little to offer her at this point. The alternative and experimental therapies are numerous and they ALL claim to work miracles. It is mind-boggling for us average folk to wade through all of this and determine just what is the best treatment program for Amanda.   

“You can get so confused

that you’ll start in to race

down long wiggled roads at a break-necking pace

and grind on for miles across weirdish space,

headed, I fear, toward a most useless place.

The Waiting Place…”

Patience! How hard it is to watch time slide by and to believe that Amanda is in there, just waiting to come out! There is so much we want to try, to stimulate her to greater awareness and functioning, and yet we are mired down in the daily process of living—holding down jobs and parenting as best we can. We are convinced that Amanda has incredible potential, yet we struggle to find the time to really delve into an aggressive program of therapy and all the appointments that would entail!

Please pray for Amanda’s family to find a way to balance the demands of work and family, so we can provide Amanda with the appropriate care she needs to recover to her fullest potential. With determination and hard work, this next year could bring about some powerful, positive changes. We know that Amanda, with her courageous spirit, is not ready to give up!

“NO!

That’s not for you!

Somehow you’ll escape

All that waiting and staying.

You’ll find the bright places

Where Boom Bands are playing.

With banner flip-flapping,

Once more you’ll ride high!

Ready for anything under the sky. 

Ready because you’re that kind of a guy!”

KID, YOU”LL MOVE MOUNTAINS!

Saturday, February 19, 2005 8:20pm

After a stay of five days at Brenner's Children's Hospital, Amanda came home with a new g-tube! She recuperated at home for several days. All went smoothly, and before too long she had resumed her regular schedule of school and therapies.

Two weeks ago, Amanda's Aunt Cindy came down from Ohio to help out. Thanks Aunt Cindy! She was able to take Amanda to various appointments and drive her to school for shortened days-so she could gradually get back in the groove. One day she took Amanda to visit a special dentist. The dentist cleaned Amanda's teeth and now her smile is dazzling! Amanda also had a few of her last remaining baby teeth pulled.

Amanda recently had an intensive evaluation by a local chiropractor that specializes in working with stroke victims and brain stem injuries. Hopefully, this will be something that can be added to Amanda's therapy program in the near future. The chiropractor feels optimistic that she can help Amanda communicate again.

Amanda continues to make progress. Her smiling and laughing are more and more frequent. She directly reacts to people she knows, visual stimulation, and animals. When she was at the chiropractor's office the other day, they brought out a therapy dog. Amanda immediately began to laugh out loud and moved her arms as if reaching for the dog!

Amanda's best friend, Morgan, visits regularly.

Please pray that Amanda's family can manage to do all the things necessary to help Amanda improve and yet keep a balance between working, and other family responsibilities.

Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.
-Psalm 27:14

Sunday, January 23, 2005

The New Year has started off nicely for Amanda. A journey north to Ohio, to visit relatives over Christmas, was canceled due to the tremendous snow and cold temperatures in that area of the country. So, Amanda and her family enjoyed a peaceful holiday at home, in Winston-Salem.

Amanda has now been weaned off of Clonidine for several weeks and is doing well! She visited Dr. Kat again this past week, and has been given the go ahead to start being weaned off of the Atenolol she has been taking for high blood pressure. Also, Dr. Kat evaluated Amanda and determined that she did not need to increase the Baclofen levels at this time. Good news all around!

Amanda has been receiving several alternative therapies recently. Acupuncture, myofascial release therapy, and aromatherapy are being used to help improve blood circulation, to increase awareness, and to stimulate brain functioning. It has been since the addition of these therapies to Amanda’s program that we have seen the incredible increase in her alertness and best of all—her wonderful smiles and laughter!

“If ye abide in me, and my words abide in you, ye shall ask what ye will, and it shall be done unto you.”

--John 15:7

Sunday, December 19, 2004

Amanda continues to amaze us with her sweetness. Every morning, she greets the day with a big yawn and stretch, and then a huge grin erupts. She is so adorable and smiley in the morning that it is hard to stay focused on getting her dressed and out the door in time to catch the bus!

Amanda is becoming more and more alert, everyday. At school, they have large buttons with recorded messages on them that the therapists are working on getting Amanda to hit in response to questions. Amanda has definite eye contact, now, and she is also becoming more vocal—making soft sounds and moving her mouth.

Last week, Amanda visited Dr. Kat for the first time since the Backlofen Pump was inserted in September. Dr. Kat and the nursing staff were astounded by the positive changes in Amanda. Since being weaned off of the Dilantin, recently, some posturing tone has returned, but it is very mild compared to what she used to experience. Dr. Kat gave the go-ahead for Amanda to begin the process of weaning off of the muscle-relaxant, Clonidine. With the elimination of each medication, an increase in alertness is likely.

Merry Christmas and Happy New Year! Please pray for Amanda to continue to gain alertness and to be able to communicate, as we begin a new year. 

“The Lord will give strength unto his people; the Lord will bless his people with peace.”

--Psalm 29:11

Thanksgiving day! 

Thursday, November 25, 2004 9:16am

It may seem that we would not have much to be thankful for this year, but as I reflect on the events that have transpired since March 12th, without a doubt God’s amazing grace is evident in our lives today.

This morning, as I lean over the bed close to Amanda’s beautiful face and say “Good morning Amanda, happy Thanksgiving!” her darting eyes suddenly shift and lock onto mine and for a moment she mesmerizes me with a purposeful gaze and a sweet smile. Slowly, she continues her long road to recovery.

Since her accident, the most difficult adjustment has been giving up the dreams and expectations once imagined for Amanda. In time, hopefully, this will become less heart-wrenching as the new Amanda emerges from the devastation of her brain injury, as we look for the positive qualities and learn to love and cherish the person Amanda is becoming.

I try to live each day to the fullest. Yesterday's the past, it's over and cannot be changed. Tomorrow's the future and we cannot predict what is to come.  But today is a gift, and that's why it's called the "present!"  Once accepting, adjusting, and establishing new and perhaps a different way of living, the compensation is in knowing that you have provided the supporting structure for the rebirth of a new, yet very familiar individual…our Amanda.

We would love for Amanda’s friends to visit with her! Hearing familiar voices is considered excellent therapy for people recovering from a brain injury. To those of you who have already given of your time to be with Amanda, we thank you. It means a great deal to us. Also, thank you to all that supported the “Songwriters in the Round” concert. It was fun and a huge success.

You have been kind to me, and your grace has been with me, and your care has kept my spirit safe.—Job 10:12

Friday, October 29, 2004 9:27pm

“A smile is a light in the window of the soul indicating that the heart is at home.”

Yes, Amanda smiled this morning! She blessed us with an adorable, side-ways grin and a cute little chuckling noise. This was the second day in a row that she has smiled for us in the morning—as we danced around her and sang this morning, “It’s Friday, it’s Friday, yahoo, it’s Friday”! The first time we thought it might be a fluke (or gas), but today confirmed that she must think we are nuts for dancing around like goons! For the past two weeks, Amanda has been taking less Dilantin (an anti-seizure medication), and this may partially be the reason for her responsiveness.

Strength and self-respect are her clothing; she is facing the future with a smile. -- Proverbs 31:25