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5 years – welcome to Holland

There are thousands of incremental achievements that have created this monumental milestone! We have chronicled Corey’s determination, spirit, energy and accomplishments. We’ve shared tough days, joyous days and days our internal cheerleader’s mantra – NEVER GIVE UP AND NEVER GIVE IN – was our only source of strength.

The days leading to this date are always filled with reflection and mixed emotions. I had dinner with a very dear friend last night. She shared a story with me that is perfect for our 5th year post.

Welcome to Holland, by Emily Perl Kingsley (c1987)

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. the Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland”.

“Holland?!?” you say. “What do you mean Halland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills..and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Itally…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.
But…if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

Corey,
Our detour started 5 years ago. In many ways, this past year has been the hardest year yet. I’m so proud of you and our family. The road has been filled with rocks, potholes, barricades and too many toll booths! Despite not having a roadmap, tokens or speaking the language, we keep looking up to see where we’re going and what’s to come. We work hard everyday to enjoy what surrounds us as we learn and re-learn how to navigate this crazy ride. Next week we take another new road. I have no idea who we’ll meet, how long the road will be or what detours we might have to take but I do know, as long as we NEVER GIVE UP AND NEVER GIVE IN, we can travel anywhere xoxo

4yrs; Day 1823- from Corey

hi everyone, it is me, your friend corey,

yesterday i graduated from bryn mawr, it was sad until i realized that i will be continuing to move on and that makes me happy at the same time.

today was my 3rd shift back at the candy store. i am up to 3 hours. my job assignment consisted of filling 2 orders for a wedding that are intended to be table favors. one was for 85 milk and dark chocolate butter creams, and the other was 30 dark and milk oreo truffles.

i had to fold all 115 boxes together and fill them. mom was my standby, although this shift she did not have to remind me of any steps, they all came back naturally and at the end she couldn’t keep up with how fast i was folding.

sue told me i am quality control manager so because it is part of my job description i just had to taste two. i must say they tasted pretty darn good if i do say so myself. i would recommend them to all of you to come in and try a piece or 2! and if you don’t live near here sue ships
you do not necessarily need a reason because she named the store right and it is Candy For All Occasions.

i hope all of you also had a sweet day today as well 🙂

4yrs; Day 1821 – Last day of out-patient; onto new research study

Hi Everyone,

Anyone that has been through a trauma will tell you the trite cliches repeatedly quoted lose their source of comfort after the first thousand. Among those most frequently recited, “when one door closes, another will open”…I can honestly tell you, waiting in the hallway is no picnic! The best quote to follow that retort is, “good things come to those that wait”. We not only know how to wait but I’m happy to say, the good keeps getting better as well.

We are about to close another chapter in Corey’s story of recovery. After 3 years and 3 months, tomorrow will be Corey’s last day at Bryn Mawr’s Neuro Out-Patient program. I can virtually hear a few gasps from our most loyal readers and prayer warriors. This is not bad news. This change begins a new chapter…we might call it, Recipes written in the Hallway.

Corey shared her first change; returning to the Candy Store. She loves being back and had a successful second day with Caitlin as her assistant last week. When Caitlin and I accompany Corey, we are given a ‘ToDo’ list from Sue and her staff. Corey carries out 90% of the task at hand only relying on us for a reminder (or ten) on directions, an extra hand if the task is difficult to manipulate and/or assistance standing and walking. At home, she continues to workout on her bike. She averages 1 to 1.5 miles every other day, and we have fully integrated her home vision and vestibular exercises from Carrick in our weekly routine, including spinning! (this weekend we received a beauticians chair for our home gym..aka the living room).

Adding Corey’s Neuro Behavioral psychologist/cognitive specialist weekly, Carrick’s visual and vestibular exercises and working with Sue to return to the candy store once a week for her social/community integration, NOT working with the professional therapists at Bryn Mawr had me very, very concerned about Corey’s continued physical progress. There are days I feel like a juggler. Just when I think I’ve added everything Corey needs and I get them all up in the air at the same time…one drops. Good news, it bounced back up!

I received a letter from a PhD student working with the chairman of the Physical Therapy department at University of Delaware. We were referred to her from a carepage friend. My friends daughter was in a car accident 18 years ago. Anne’s car accident was similar to Corey’s and she sustained many of the same injuries as well as the severity of her TBI. Anne’s mother and I have become penpals over the last 5 years. We had the pleasure of meeting them both when they attended one of our Brain Injury talks a few years ago. Anne has been a pioneer participant for one of the research studies UofD is currently executing.

Dr. Cole Galloway, a University of Delaware professor, researcher and Chairman of the Physical Therapy department, created GoBabyGo. He collaborated with engineers and fashion designers and with parents and grandparents, to provide mobility to kids who have trouble moving on their own.

Galloway started with custom robot-driven devices and later began modifying off-the-shelf toy racecars to provide mobility to children with crawling and walking problems, empowering them to be part of the action at home, in the daycare center, and on the playground.

The team has developed kid-friendly exoskeletons to promote upper-body movement as well as harness systems to provide partial body-weight support and free their hands and feet for sports-type activities.

In 2014, Dr. Cole Galloway and his team pushed the envelop turning their focus to the adult population within the Traumatic Brain Injury world. How could adults benefit from the harness system? Could it enable those with limited mobility from brain injury or stroke re-enter a work environment? Brainstorming sessions confirmed there is limited information on a critical demographic; the severe to moderate levels of injury.

What environment do most adults enjoy? A coffee shop!

The team created GoBabyGo Cafe. Dr. Galloway developed his harness system for the cafe with the help of Newark-based Enliten, LLC, which manufactured the canopy structure out of aluminum and steel bars. The harness enables those with limited mobility from a brain injury or stroke to work, while also benefiting from a rehabilitative physical therapy session.

(Per the Newark Post) The version used at the GoBabyGo Cafe kiosk is known as the Oasis – Open Area Support System – it can handle patients of up to 300 pounds and it can be easily designed to fit in almost any shape room. Unlike the one at the Early Learning Center at UofD, it doesn’t require power. Galloway explained that users are connected to the support structure with a strap that provides no lift when the user is moving but catches the person if he or she starts to fall. A counterbalance or elastic connection between the user and the structure provides a steady vertical force to reduce the load on the user’s legs. A turntable enables the user to change direction with a twist of the wrist, allowing her to move anywhere within the 50-square-foot structure. With all the support coming from overhead, Galloway said, users like Anne are free to interact with their surroundings with no interference.

Galloway’s team is working with a grant from the National Institutes for Health to test the impact of using the harnesses in a workplace setting on muscle and joint strength.

Corey will be the second person in their study. We are thrilled to find this new door! The ancillary benefits of not just standing but walking, using both her arms, improving her speech as she interacts with customers, eventually learning the steps involved in taking an order, writing it down, physically walking to the coffee machine to make latte’s, deliver the product, collect money, make change all while balancing is beyond what I could have hoped we would find for her. Working with students her age, the opportunity to ‘feel normal’ but above all, the chance to develop confidence and truly experience a renewed sense of independence is something I hoped for but secretly wasn’t sure would come true.

This study comes at a critical time for Corey’s personal and emotional growth as well as pushing her physical strength and stamina. She will be working 3 days a week, 2 hours each day. The study will formally run for 2 months, but Corey will be invited to stay on as a volunteer if she wants to continue. Anne has been working at the cafe for 8 months. She and Corey met this week. Anne assured her she loves her job. She feels freedom for the first time in her adult life and she is making friends working with other young adults.

(per the Newark Post) Galloway said he envisions more harness systems coming out of physical therapy clinics and into schools, shops and workplaces, and the GoBabyGo CafĂ© is just the first step. Galloway said it’s important for people with limited mobility to get moving in their community so they avoid the psychological and physical isolation associated with disability. The harness system opens up possibilities and motivates people to get out and interact with others, he said.

To Galloway, there are no limits to where a harness can go. “We’re absolutely putting a harness in a food truck,”.

CAN YOU IMAGINE?!?!?

Chef Corey working in a food truck…that’s going to be a fun chapter to write! xoxo

4yrs; Day 1809 – from Corey

Hi Everyone,

Today was a “Ginormous” milestone for Corey. She had her first shift at the candy store in 5 years.

Corey worked at the local candy store (Candy for All Occassions) before the car accident. Sue, the owner, was not only the key point person to organize the donated materials and contractors for our home renovation, but she also kept Corey’s name on her employee’s schedule knowing she would someday return to work.

I reached out to Sue a few months ago looking for alternate opportunities for Corey’s community integration and peer socialization. Sue’s response “ABSOLUTELY! just tell me how many days and times and we’ll have plenty of work for her to do”.

Corey would like to tell you about her first day back to work…

hi carepage readers this is corey,

my first shift was from 12-2pm.

1st of all i was very excited to be back.

2nd i walked from the parking lot with my cane and my mom right in to the candy store

today with BOTH hands i folded 100 truffle boxes. the memories of doing this came back like old times, so it was really not that hard. just a little difficult holding it with my left hand while my right hand was doing all the work folding.

next i stood up to put the dark chocolate truffles in each box. that part was really hard because i had to try my best not to give in and eat one. but i did my best and they are all there, i promise!

my last job was to dip ice cream pretzels. do you know what ice cream pretzels are? they are the little pretzels sticks dipped in chocolate that we give each person that orders a scoop of ice cream.

it was fun being in the candy store again. it smells like chocolate. that is a great smell, xoxo

4yrs; Day 1808 – opportunity does not exist without change

Good morning everyone,

On the last day of our trip to Dallas, Caitlin, Corey and I celebrated the courage to try something new. We celebrated the act of taking a risk. We celebrated overcoming fear of the unknown. Today is an opportunity to practice the same intention.

Embracing change is not easy. I often remind myself that change is actually a neutral factor in our day. It is the emotion we associate with it that brings it to life. We can be excited at the wonder and anticipation, or fearful and labor over how oppressive it could be.

I believe the most difficult challenge we face as a family is the overwhelming constant of living with the unknown timeline of TBI. We remain guarded for the best and the worst within each of our 24hours.

I am feeling a heaviness this morning as I prepare for a meeting with Bryn Mawr at noon. For those of you following us, you all know what the “team meeting” represents. Corey has been a patient in the Neuro Out Patient program for 3 years and 3 months. She is the first patient to remain in the program without interruption. My sister Diane reminded me, “every time you were faced with discharge, historically, it launched Corey towards greater opportunities”. The ‘weight’ of finding those unknown opportunities is why I sit and ‘talk out loud’ to all of you.

Perspective…
Change = possibility, opportunity
We won’t go very far walking on a treadmill.
Change = growth
A person is the sum total of their experiences. Feed a man a fish and he eats a good meal. Teach a man to fish and he will be well fed for a lifetime.
Change = movement, momentum
Business Development 101…it’s not what you know it’s WHO you know. The more people we know in the TBI world the more we share and the more we learn from their experiences, the greater the possibilities and opportunities for growth, movement and momentum
for Corey. Her goals, her success and her ability to live her life to the fullest will be achieved to the best of her “abilities”.

Opportunity does not exist without change.
Today I must manage and respond to change so it will work for us, rather than against us. My fear and worry will not direct us towards our best potential.

Every marathon runner has multiple pairs of sneakers…time to lace up…xoxo

4yrs; Day 1802 – sparks

Hi Everyone,

We took the doctors advice and rested Sunday and Monday. Corey’s headaches persist and she is much more fatigued. I was reassured that her fatigue is normal and could possibly continue for several months as we reactivate her right brain. We are beginning to see some subtle changes. Corey’s standing straighter and longer…unassisted. Her left foot is stepping straight forward and she’s grasping objects with greater accuracy using her left hand.

Today we uploaded the focus exercises on her Ipad and worked on her new complex movements. The next 90 days will be intense balancing the additional work with her current therapy schedule but we have to think of the payoff. If you all thought she was working hard up to this point, you can’t imagine what this young woman is about to push through!

As Corey rediscovers and reconnects, I will share the ‘little sparks’ as the forge new pathways.

Tonight’s little spark;

We were listening to sport trivia. One of the questions was, “there are 9 players on a baseball team. Each number 1 through 9 represents a position on the team. What number is the short stop”?

For those of you who didn’t know Corey when she was younger, she was the Tasmanian devil…she never slept and never stopped moving. There was more than one occasion, mom needed a break. I noticed the only time she “stopped” was when there was a baseball game on the television. Corey could be running through the family room full speed when she noticed the game and stopped to sit and watch…for the whole 9 innings! Needless to say, I started recording baseball games on the old VHS tapes. If I needed to get work done, there was a game on at the any time of day!

Corey loved baseball. As a young adult, she knew every statistic for the American and National Leagues. She knew players and their lineups.

So tonight when the trivia question was posed, she confidently stated #6. I had no idea if that was correct or not but complimented her on her confidence. She looked at me and said, “I don’t know if that’s right but that’s my bet”. She won!

Another spark happened as we were driving home;
C – mom, I just had a flashback of this road
M – what do you remember?
C – you were driving me on this road coming home from (she had trouble remembering the name BASKETBALL and motioned as if she was dribbling a ball)
M – Basketball?
C – I played that game right?
M – yes, can you picture your team and where you played?
C – (with a broad smile of pride and confidence) ABVM
M – you’re right! (she played at age 8 & 9)

Please GOD…keep those sparks coming, xoxo

4yrs; Day 1798 – change in numbers

Hi Everyone,
We did it! Tonight we celebrated having the courage to try something new and taking BIG steps to enhance Corey’s recovery.

The VNG tests Corey took at the beginning of the week were repeated today. Dr. Cagan Randall compared the results and literally jumped out of his chair in excitement when he saw the numbers.

Corey isn’t coming home fully recovered but the change in her vestibular numbers in 4.5 days definitely proves she has thousands and thousands of neurons that WILL recover. Dr. Randal was thrilled. It’s an amazing report for someone 5 years post injury.

We are heading home with a ton of exercise homework that needs to be practiced every day 3x a day for the next 90 days. We will be fundraising for the next visit in December. The Carrick team can’t wait for Corey to return! xoxo

4yrs; Day 1797 – Corinne joined us in Texas

Hi Everyone,
My post last night reflected a conversation between Dr. Ross and me because yesterday afternoon Corey started to become overwhelmed and anxious (aka Corrine flew into Texas ready for a bull fight). She was regressing and reacting to her separation anxiety. Caitlin and I had a rough night and rougher morning with her.

One of the most important observations we’ve seen this week from the Carrick team is the sincere desire to work with each patient AND their families. Functional Neurology is not just diagnosing an injury or illness. It’s not just prescribing medication. It’s looking at the whole person. Corey is her physical injury. She is her medication and she is her thoughts. They cannot be separated, nor treated separately.

Our first session was with Dr. Ross. He sat with us for 90 minutes talking about how TBI not only affects the survivor but the family too. Although this wasn’t part of the scheduled Carrick protocol therapy, it was just as important
it was family therapy because we are all still healing.

Dr. Ross drew a sketch of the brain. Knowing we are a ‘band’ family, he broke the brain down for Corey using the following analogies.

What part of the band or orchestra keeps the tempo? The percussion section. In the brain, the percussion section is the cerebellum. It is the first to be developed and keeps the body’s tempo coordinating voluntary movements such as posture, balance, coordination and speech. It gives us smooth and balanced muscular activity.

As the brain grows and the person grows in the womb and as they mature, the rest of the band is formed. Each section enhances the sound and body of the whole band. The Frontal Lobe is the Band Director or Maestro. The Frontal Lobe directs everything the body does. Our DNA is the music.

What happens if one rogue instrument decides to play a different score? The rest of the band has no idea what that guy is doing and no one knows how to follow? What happens if the maestro stops directing and everyone loses their sheet music? That’s what happens when the brain is injured.

When the brain has had an injury, whether it is a concussion, moderate or a severe TBI, the persons DNA changes. Our new friend from Boston that has had concussions from ice hockey, can no longer eat any foods with soy, dairy, egg, peanut or gluten. Her sheet music has changed.

The injury has not only changed the DNA, it caused stress to the entire body. Corey is living in a state of stress every day. She is in a constant state of fight or flight because of her memory loss. The Maestro is no longer directing her orchestra. Dr. Ross looked at me and Caitlin and pointed out we are living in a state of stress, too. We have adapted our state of mind to the same fight or flight waiting for Corey’s explosions, fighting appeals and balancing life’s “normal” pressures while caring for Corey.

He reviewed the 3 components of a person/Corey; the physical/trauma, the chemistry/toxins and the mental/thoughts.

Corey lives the physical as well as the delicate balance of the chemistry needed to balance the loss of her sheet music. 90% of the medical world treats those two areas alone. What is often overlooked and is just as critical is her consciousness/thoughts.

Dr. Ross drew another Diagram;
HATE _______________Thoughts____________LOVE

Just as there is a spectrum for TBI, there is a spectrum of thoughts
Negative thoughts produce negative chemicals such as cortisol, epinephrine, and adrenaline. Positive thoughts release positive chemicals such as dopamine, oxytocin and serotonin.

Stress = Silent Killer
Negative thoughts will slow down healing. He reminded Corey of the deep breathing exercises we used yesterday.

Thoughts = Breathing
You can’t shut off your thoughts, (on Tibetan monks that practice meditation all day can achieve that). Thoughts are as fluid as the breaths you take BUT
you can control them with breathing.

Dr. Ross then joked with us “if you google’d meditation or how to release stress you’d find, exercise, eat a healthy diet, sit quietly, think positive thoughts”
his next statement, “DUH! If that worked, why would I be googling how to release stress?”

The answer is in WHAT you do when you breathe to release stress.
Think of your 5 senses; Sight, Hearing, Touch, Taste and Smell. If you concentrate on 2 of the 5 you can meditate, breathe and control your thoughts.
1. Listen to your breath, 2. feel your breath or feel your heart rate. If you can concentrate on 2 of the 5 senses, you can control your anxiety. If you practice it several times a day, you can control your responses no matter where you are or how many people are around you.
It’s called Mindfulness Based Stress Reduction.

Mindfulness is not easy. One of the most difficult challenges we face (and most TBI families face) every day is being mindful of why Corey’s reactions are so inconsistent. Plain and simple, it’s understanding where the injury is and what parts are still weak
and remembering that information when Corrine shows up! This week the therapy at Carrick has stimulated Corey’s right hemisphere trying to improve her left side. The right hemisphere houses awareness and anxiety. Carrick not only stimulated it, they took it on a roller coaster ride. The team at Carrick expected Corey to implode (Caitlin and I were hoping the first miracle would be behavior stability
we were told it would come). Corey’s outbursts are actually a good sign. She is aware. Her outbursts are her coping with what’s familiar to her.

Another good sign, while walking from the bathroom to the bed tonight, Caitlin noticed Corey’s left foot was kicking straight as she took a forward step. This is more than significant because she was not wearing her brace on her left leg
she was in her socks. Normally, when she walks her left foot flops about as she takes her step. We call it her floppy fish foot
That fish is swimming straighter. We can’t wait to go back tomorrow and show the team.

Our day will begin at 10am for diagnostics. Corey will be retested to compare the results to the initial intake testing. At 12:30 we meet with Dr. Ross and Dr. Brock to discuss the lab results and possible medication changes. And finally at 2pm Corey will have her last therapy session for the week. We will get our homework and make a plan for our next visit, xoxo

4yrs; 11 months – 90 minute sessions

Hi Everyone,
Today Corey had three 90 minute sessions. She repeated each of the exercises I detailed in yesterday’s post with a few additions.

Addition #1 – Deep breathing

Corey’s posture and years of sitting in her wheelchair has actually shifted her internal organs, including her diaphragm. The shift causes shallow breathing patterns. We practiced several times throughout the day working on her posture and teaching her to take a deep breath in through her nose for 2 seconds and exhale as if she’s blowing bubbles for a count of 4 seconds. This technique will help Corey with relaxation and anxiety
(this addition was added after Corrine stopped in several times to visit).
The best time to practice the new breathing exercise was during the viber-percussion session. We are beginning to notice an increased range of motion, ease in flexibility opening/closing her hand and increased speed in Corey’s eye/hand coordination. We ask Corey to lift her left arm straight out in front of her to grasp our hand. We then move our hand in a varied pattern asking her to find/reach and grasp her target. Her arm is lifting and dropping to a relaxed position with less of a ratcheted motion, her elbow is straight and her reach is extended faster to her left side. We are also noticing her left arm dropping as we walk (it is typically bent at the elbow with a tight fist). Her left leg seems to be looser as well. Tram explained that our balance is achieved as we walk with both arms to the side of our bodies and we swing with our normal gate.

Addition #2 – OBK vision;

Corey is now counting the passing lines out loud. The goal is for Tram to silently count down 10-1 as Corey counts out loud 1-10. Each line passes across the screen at one second intervals. This helps in 3 ways; 1. keeping Corey’s head centered as her eyes track the lines. 2. Counting out loud uses the left side of the brain. 3. This also increases general reflexes and increased motion response.

Addition #3 – rebuilder bath
At the end of each session, after the SPIN machine, Corey goes into the quiet room. It is dark and filled with recliners. We remove her shoes and socks. Tram places electrodes on each foot and then places her feet in warm water. I’m sure you all are thinking ‘this is electric shock therapy’ but its not
the electric stem targets the primitive brain and cranial nerves which were developed first. The water is not only soothing but takes her back to the comforted space in the womb. The rebuilder wakes up the sensory and vestibular section of the primal brain. The functional benefit will help Corey become aware of her feet and her foot placement as she walks.

Aside from therapy;

Over the last 3 days, we have met families from Canada, Montana, Boston, California, Arizona and Maine. Every story is different but each family has been affected by a traumatic brain injury. One young girl is 20, she received her concussions from ice hockey. She can no longer tolerate light and can no longer understand Science or Math (left brain injury
she was a science major interested in PT). The young man from California, 28, owned his own construction company and fell on the site of a job. He is trying to regain the use of his left leg. (Right brain injury). The young woman from Canada, 30, lost her vision, hearing, and use of her limbs as well as strength in her skeletal muscle tissue from multiple concussions. She has been coming to Carrick for a year. She arrived in a wheelchair, graduated to a walker and is currently walking independently. Her hearing is coming back in her right ear and she has 20/20 vision.

The mothers, fathers and spouses I’ve met and spoken to all agree
TBI not only changes the life of our loved one but changes each family member as well. This is the most difficult life experience any of us has ever faced. The accomplishments our loved ones have achieved are all significant and in many cases are miraculous. That being said, all of realize this is a day to day walk. There is no miracle cure. The Carrick Brain Center offers alternative methods of functional neurology which enhances all the ‘other’ therapies our loved ones tirelessly work on each day. The brain requires a myriad of stimuli, strategies and techniques to function.

Dr. Ross sat with me privately to discuss some of the coping techniques I utilize as a caregiver. The simple question broke down my defenses and I began to cry
I can be strong for my family but get me alone and the tears are quick to surface…definitely one of my ‘private’ techniques. The following conversation was not about Corey. We spoke about our healthy brains. “Where do thoughts of the past, present and future come from”? The answer; the frontal lobe. “Which thought causes the most pain for the caregiver”? The answer; the future
because it is the unknown. We have no idea what will happen for us, our families or for our loved one and that pain is greater than what we deal with each day and even deeper than what happened causing the injury.

So how do we cope with that pain? We stay in the present.
What can we do to stay in the present moment?
…This will be tomorrow’s lesson, xoxo

4yrs; Day 1795 – spinning

Hi Everyone,

We are so lucky to be here! This team is amazing!! Caitlin and I have learned so much and we are already seeing a few small changes in Corey’s posture and her left arm/hand beginning to loosen some of its tone/contracture.

Tram is the personal therapist assigned to Corey as well as trainer to Caitlin and I. The following 4 exercises were completed during the morning and afternoon sessions.

Exercise session #1 – Viber Percussion

This machine reminds me of an electric shoe polisher/buffer
for those of you who don’t remember shoe buffers; it’s a large round bristle brush. Tram ‘buffed’ Corey’s left upper arm, elbow and forearm. The spinning bristles stimulate nerve endings which send a message to the brain that helps the arm move. (Technically called igniting neuro-plasticity)

After the percusser, Tram taught Caitlin and I how to execute complex movements for Corey’s left side. I held Corey’s left foot and Caitlin held Corey’s left arm. Together, we move Corey’s foot and arm in the shape of the infinity sign. As Corey loosens up with the swing of the movement, Caitlin (keeping Corey’s elbow straight) rotates Corey’s wrist, palm up and palm down, with the motion of the design. We do this 3x for 30 seconds, wait 20 seconds and begin again. This exercise will help Corey kick her leg straight as she takes steps forward instead of her current pattern. Currently when she takes a step her leg swings out away from her body as she moves the leg forward.

Exercise #2 – SPINNING!

The Carrick Brain Center has a large machine that looks like a NASA simulator. Corey could not step up into the spin machine so we used the hoyer lift attached to a ceiling trac. Wrapped in a sling (or her papoose as Caitlin called it) the hoyer lifted her out of her chair, across the room and down into the spin chair. Dr. Ross began with a slow, horizontal spin. Corey stairs at a stationary dot as the chair spun to her left. Spinning in this chair, shifts the vestibular pressure from her right side to her left side. When Corey stands, her posture is crocked. Her right hip sticks out to the right and her shoulders tilt left. Her head tilts left as well. Once the vestibular pressure is stabilized and balanced, Corey’s head and spine will align.

(we received permission to video all Corey’s exercises and the spinning machine. We will try to post a clip tomorrow)

Exercise session #3
No No’s

Tram sits directly across from Corey. Posture is key to this exercise. Corey looks at the bridge of Tram’s nose and does not move her eyes. Tram puts her thumbs on Corey’s cheeks just in front of her ears, her four fingers wrapped to the back of Corey’s neck. As Corey fixates on her target, Tram moves Corey’s head in slow movements as if she’s shaking her head side to side saying NO NO
hence the name. This exercise was followed with an OBK app on Dr. Ross’s phone. It is similar to the blue screen/yellow line exercise from yesterday. When they work with this exercise, it is retraining and strengthening the eye muscles.

Exercise session #4
Electric Stim

Using an instrument that looked a little like a cattle prod, Tram placed the stim on Corey’s tongue and her left temple. Dr. Ross explained the 12 Nerves within the brain stem. The cranial nerve 3, 4 & 6 affect the eyes and nerve 12 affects the tongue. Electric Stim (properly placed for this area) targets the lower Brain stem. It will stimulate the neurons to “talk to each other” again. Dr. Ross shared a wonderful video about neuro-plasticity, demonstrating how neurons rebuild and reconnect.

The team will also be looking at Corey’s medications. Dr. Brock is the metabolic specialist. Tomorrow Corey will have blood drawn to check her levels. She gave a urine sample to see which/how her body is absorbing her medications and she had her cheek swabbed to test what medications work with/against her DNA. The results will be back by Friday. If Dr. Brock makes any changes, it will be determined by these results.

At the end of the day Corey wanted to do something “FUN”
so we found a mall. The Galleria in Dallas is HUGE! 3 stories of shops plus the food court is on the lower level overlooking an indoor ice rink
guess this is how Texans beat the heat? Best news, we only got lost twice on the way back to the hotel. We are navigating the old fashioned way, real maps (primarily because the cell phone GPS eats up too much data!) In two days, we are becoming quite the explorers
amazing how a wrong turn teaches us new short cuts!

Day 2 is completed, xoxo