5yrs; 2 months – BIG update
Hi Everyone,
We have a good update for you today, not because everything is going smoothly or for the fact that Corey suddenly had a full recovery. It’s because we continue to work very hard to focus on finding a positive for every negative. We’re not turning into Pollyanna’s, we are practicing coping strategies to live in and among the daily challenges that are thrown at us. This mindset has been the foundation for our carepage and how we have approached Corey’s recovery. We cannot control accidents, illnesses or death. We cannot control other people’s actions, choices or decisions. What we can do is control our responses to every situation we encounter. It’s my mother’s mantra, “It’s not the challenge you face but how you face the challenge”.
Corey’s been very sad. She’s frustrated, angry and tired of ‘getting better’. She tends to phrase her sentences with a negative spin. Caitlin and I work twice as hard to reframe her statements trying to retrain her perspective. We work twice as hard because our first effort is to keep our own spirits in a positive space in order to hear Corey’s harsh words and sadness but not become personally affected by it. That can be tricky at any given moment throughout the day. This practice is also used to deflect the emotions from outside events that might upset us and cause us to negatively react to what we already face day in and day out with Corey. It is a very delicate balancing act. Somedays we make it across the tight rope, other days we fall and pray there’s a net to catch us so we can bounce back and try again. So far, there hasn’t’ been a hole in the safety net and yesterday we walked across without falling!
As you know, Corey has been working hard at the GoBabyGo Café. Unfortunately, she is unaware of her improvement because of her memory loss but we are over the moon as we are starting to see her progress improve her daily function. We’ve witnessed MANY new firsts in the last 2 weeks.
The research study requires a re-evaluation every 2 weeks from the start date. The best part of a research project: progress is evaluated from the individuals baseline score; unlike the comparison to a national average that we have fought with insurance for the last 5 years.
Yesterday was the first re-eval . The evaluation has 3 parts to the 4 hour test; Physical (walking), Occupational (hand function) and Cognitive (memory, sequential thought, special awareness). To recap; the initial qualification test (October 5th) Corey struggled but passed the Physical and Occupational parts and she scored a 10 on the Cognitive part (required baseline score was 21 out of 30).
Within the Physical test, Corey walks with a harness support and her cane. She has a series of commands to follow. Walking at a normal gate, speed walking, interrupted gate to turn abruptly, walk and step over obstacles and move within a 4 square space. The Occupational test requires testing of both the Left and Right Hand independent movement. The tasks include timed dexterity movements; lifting cans and wooden blocks, rotating her wrist/arm to pour water from cup to cup, and fine motor control – picking up paperclips, checker discs, marbles and stacking assorted items. The Cognitive test included, connecting a random scattering of number bubbles for ‘connect the dots’, a separate test that required a random scattering of bubbles with numbers and letters. Corey was asked to connect the dots following a number/letter sequence (switching number to letter 1A, 2B, 3C, etc to 25!). She must also redraw a 2 dimensional cube, retain 5 words that would be recalled at the end of the test (approximately 15 minute time difference), identify 3 line drawings of animals, draw a clock noting a specific time, and identify the present day, date, month, year, city, state and location of the exam. The creators of the study were devastated when Corey didn’t pass the Cognitive score yet they believed in her potential and fought to change the baseline cognitive score to 10. We waited a month but the review board granted the request and Corey was approved.
November 13th – new baseline evaluation. Corey scored a 15 on the Cognitive test. She continued to struggle but passed both the Physical and Occupational tests for the baseline admission scores.
December 2nd – Cognitive score = 15. That’s good because it didn’t go down (always a possibility). It’s GREAT because within the last week Corey is consistently remembering the year, 2015; she identifies she’s in Delaware at the University, she recalled 1 of the 5 words without a verbal prompt, she drew the 2 dimensional cube more accurately than the previous 2 tests (this time it was a square shape), she connected the bubble dots with increased speed and accuracy.
We realize this may seem like we’re reaching because although she says its 2015, we’re not sure she conceptualizes what the year truly means and she still does not know the month, day or date, or any recall of her daily schedule. That being said, when asked to “picture the café” in her mind, she can describe the physical details of the space and physical characteristics of the students she works with. All doubts aside, this is huge! We’ll take any spark of memory she shows!
Yesterday’s physical test also had moments of surprise. Corey walked for 20 feet with her eyes closed and did not lose her balance. She walked backwards for 15 feet lifting her left foot with each step (sign of hip, leg, core strength and improved balance). She walked over her obstacle without stepping on it and/or missing it. The biggest surprise and a new first, the 4 square test. Picture 4 squares within a box, sectioned. Devina places canes along the cross lines dividing the numbered squares. Corey has to stand in box 1, step forward into box 2, side-step into box 3 and back-step into box 4. Then move in sequence counter-clockwise all WITHOUT stepping on the canes that divide the boxes.
-October 5th, Corey could not move from box 1 to box 2 and she could not complete this portion of the test.
-November 13th, Corey could not complete this portion of the test without stepping on and kicking each of the canes as she maneuvered the square.
-December 2nd, NAILED IT…except for the step backwards on the counter-clockwise position from box 2 to box 1 (which was the final step in the rotation)
The Occupational test was equally as impressive. Corey has been practicing ‘scrunching a dish-towel’ as she moves her hand forward across the table and squeezing bean bags with her left hand. She also received botox on November 23rd. There were several 1st’ during yesterday’s test. Corey’s fine-motor control has improved with her left hand. She picked up a paper clip, controlled lifting and placing a checker’s disc to stack and lifted a cup of water with her left hand to pour into a cup held in her right hand without giving herself a shower! In fact, she didn’t spill a drop of water.
At home, she is walking straighter, balancing at the kitchen island and stove with more stamina and less ‘sinking noodle-legs’. She continues her cooking, not only mixing the ingredients for meatballs but this weekend scooped a portion and rolled them using two hands. Over Thanksgiving weekend we observed the BEST FIRST in 5 years.
JohnPaul and Jackie met us at the grocery store. We wheeled Corey into the Giant. She stood, reached out to hold onto the grocery cart (Jackie was following behind with the chair ‘just in case’, JohnPaul stood in front of the cart to protect her from the snow-ball run-away cart scenario, and I stayed behind Corey ready to grasp the gate belt if she lost her balance). COREY WALKED INDEPENDENTLY PUSHING THE GROCERY CART! She controlled the pace and turning skill to move through the produce section. She held onto the cart, reached out/across and lifted each item on her list with her left hand and placed them into the cart herself. We made our way zig-zagging through the produce department and across the back of the store to the meat section, then down the aisle to canned goods. Our grocery store is a mega-store. Corey walked pushing the cart independently for 45 minutes which equaled half the width of the store before she needed to sit and rest!
To sit and watch Corey be tested October 5th was painful. It’s hard to watch her work so hard to do the simplest task. I sit waiting, silently chanting the answers to questions she’s charged with answering hoping that ‘mental telepathy’ could actually work outside a Hollywood sci-fi episode. November 13th, I knew what to expect having watched the previous evaluation but to watch Caitlin watch Corey was the most difficult. She experienced a new level of Corey’s struggle. She watched her ‘new sister’ being evaluated.
These mixed emotions are part of everyday, for all of us. There’s a saying, “you can’t know joy without experiencing sorrow”…Oh, how I hate trite sayings…especially when they’re accurate. We get sad at some memories and our current reality, but we can find joy, hope and motivation when we witness every new first, every improvement (no matter how small). We look for the positives and remind each other (sometimes as we argue) that there have been more improvements than obstacles…ok, that’s a definite stretch! What’s our reality? Corey’s cooking, grocery shopping, working at the Candy Store and the Café. No matter what we face, no matter how hard the task, no matter what we have to do to fight through it and for it…the safety net will catch us when we fall and we will get back up and try again…we NEVER GIVE UP and we NEVER GIVE IN! xoxo
5yrs; Day 1874 – GoBabyGo Cafe
Hi Everyone,
Devina thought this would be orientation week. She had no idea just how serious Corey is about working in a culinary environment!
Day 2 was another success. The greatest comment came from Dr. Cole Galloway to Caitlin as they watched Corey restocking forks and spoons, “I love watching her smile”.
Notes for the day;
Walking achievement;
1st try:(secured in the harness but not holding the forearm cane)Corey used her right hand to guide/brace/balance on the counter-tops as she walked from the back of the cafe to the front counter.
2nd try: Holding/walking with a cup in her LEFT hand, she used her right hand to guide/brace/balance along the counter-tops to serve a customer
3rd try: Holding/walking with a cup in BOTH hands she walked directly across the center space of the cafe…3rd times the charm!
Socialization; Corey’s shift is during the lunch rush. She met several of the ‘regular’s’ that frequent the cafe. She introduced herself and engaged in conversation with many of them. Everyone was very welcoming.
Cognitive/Visual achievement;
Corey made her first salad. Caitlin was lucky enough to be her customer.
Corey’s new glasses are truly helping. Not only can she see clearly, she is not complaining of the usual daily headaches. Corey is learning the register. With verbal ques from her co-worker, she managed the computer touch-screen with ease.
Corey (speaking to Caitlin) that will be 6.49 please
Caitlin handed Corey her a mix of currency and coins
Corey carefully counted and entered the amount received and when the drawer opened, she placed each dollar and coin in the correct section without any verbal ques! This may not seem like much but if you remember, I mentioned yesterday Corey didn’t recognize the front of any currency. Well, she also has not been able to recognize or identify any coins! Is it a new connection or the glasses? We don’t know and quite frankly…we don’t care.
After the sale was complete she closed the drawer, smiled at Caitlin and said, “All done”!
Caitlin laughed out loud. “This feels like we’re playing store but it’s for real…with real money”!
Standing achievement; 90 minutes and she walked out to the car after the end of the shift!
Tomorrow is the last day of her first week. Devina wants to take some videos of Corey working on specific tasks to use as a comparison to achievements we expect to see in the next several weeks.
This cafe is an amazing experience not only for Corey but for our family. One of the best parts of this experience is watching Corey’s confidence build as she works/stands and walks in the cafe knowing she cannot fall and can do anything that is asked of her.
We are so excited and will continue to share our notes with all of you, xoxo
5yrs; Day 1873 – 1st day at GoBabyGo Cafe
Hi Everyone,
Corey passed her cognitive test with a score of 15! she qualified and Yesterday was her first day working in the GoBabyGo Cafe at the University of Delaware.
We arrived early. Corey insisted on walking in from the parking lot (approximately 350 feet). As we waited in the lounge chairs for Devina I could see Corey tense up. She was looking at the students congregating in the lounge. This is the first time she’s been in an environment with so many people her age. She was a little nervous but Devina was comforting explaining the expectations for her orientation week. “We are just learning where things are and how to work with each other. I want you to get comfortable moving and walking around the cafe and you can take as many breaks as you want. There’s no rules this week”. “Oh, there is one rule; if you get frustrated or angry, which could happen, you just can’t throw muffins at the customers. That’s bad for business”.
Once Corey’s nerves were settled, she walked to the kiosk. Devina helped Corey into the harness. The harness system resembles a parachute harness suspended from a rolling pole across a square grid. It enables Corey to move in all directions as well as spin/turn to change direction without fear of losing her balance and falling. (See photo gallery pictures)
Corey was in her element. She moved about the kiosk listening to directions, taking in the contents of each area. We all were nervous about her comfort level and whether or not she would take to the harness system. She surprised us again!
At first Corey held her forearm cane for balance as she moved. When asked to start restocking supplies, she removed her right arm from the cane to begin work. The cane fell to the floor. Her co-worker picked it up and placed it next to her. It fell three more times and she politely told him to put it aside because she didn’t need it…she spent the rest of her shift moving about without the cane because she felt secure in the harness.
Devina quickly saw the ease in which Corey manipulates her right arm, so she switched it up quickly. Corey was asked and agreed to unpacking the stock with her left hand, transferring the items to her right and placing those items with her right. Caitlin and I watched her concentration and immediately noticed she was initiating conversation with Devina and asking questions about her task. This was a first! She engaged with her co-workers, smiled frequently and never looked over at me nor asked for me once! Needless to say, Caitlin and I cried tears of joy and relief for the first 20 minutes.
Corey was working ‘at the back’ of the cafe when I approached to buy my lunch. Devina asked if she wanted to ring up my order. Devina thought she would be shy about learning the register and talking to clients her first day. Corey moved to the front of the counter and looked at me quite seriously as she asked, “How can I help you, mom”?
M – I’d like to buy this salad and bottle of water please.
Corey’s co-worker stood beside her to teach her the register. He pointed out where to find the proper category, select the item, enter and find the total of the purchase. He did not touch the register, Corey found each selection and managed the screen herself (thank goodness for the new glasses!)
C – 7.99 please.
I handed her a $5 and three $1’s
M – How much did I give you?
Corey has not been able to recognize the front of any currency. Typically, she turns them over to see the backside before she can add the total. She separated each dollar and looked at me
C – 8 dollars
(another first)Her co-worker showed her how to enter the amount received and added, “before you hit enter, move the money to the side of the register because the drawer opens really fast and hits your stomach. If the money is in front of you it gets stuck under the drawer…guess how I know that”? She smiled at his humor and advice. She entered the money and read the amount of the refund.
C – (in a very professional tone) 1 cent is your change
M – I have to give you a tip (as I put $2 in the tip jar)
C – thank you mom, can I get you anything else?
M – I feel like we’re playing restaurant just like we did when you were younger!
I was Corey’s first customer and to Devina’s surprise, she wanted to wait on the additional 3 behind me. She spent the next hour/half walking throughout the cafe’s 50 sqft’ space, restocking, interacting, preparing a parfait and never looked happier. She took 3 short breaks about 10 minutes each. She stood for a total of 1 hour…another first! I sat across from the kiosk, prepared with ‘busy work’ but couldn’t stop watching her.
At the end of her shift, she asked for her wheelchair. She was one tired woman! As we were leaving, the young woman working with her asked if she’d be back. Corey looked at me to answer for her. I told her we’d be back Thursday and Friday. The young woman was very excited, “oh great, those are the days I work. I get to work with you again!”. We said our good-byes and as I wheeled Corey out, I leaned over and whispered, “Did you hear that, Kayla is looking forward to working with you. I think you just made your first friend”. Too tired to speak, she just smiled and lifted her arm giving the universe a victory ‘fist pump’
She has worked 1,873 days for this day. 5years, 1 month and 16 days…
Never Give Up and Never Give In, xoxo
5yrs; Day 1861 – trying something new…again!
Hi Everyone,
We’re trying something new….AGAIN!
Corey has severe memory loss, especially for short-term memory. Day to day activities are lost 5 mins after they are experienced. She started taking Aricept (an Alzheimer’s Rx – used to prevent further memory loss) since January. We’ve noticed there are flashes of memory recall within a week or two of the experience for a certain person she’s met and recall of certain words or a phrase of a recent conversation. Corey doesn’t remember the experience but she tries to describe one image from the experience. Unfortunately, these flashes are not consistent. I mentioned we went to the eye doctor last Friday for a 3 hour appointment. Last night Corey repeatedly asked me when we can go to the doctor to get her eyes checked. Yesterday we went to the dentist. Last night she couldn’t understand why her teeth hurt and asked what she ate that might have made them sore?
We use reminder cards; large 5×7 index cards with key words or one sentence to place infront of her. Cards include, “Exercise – Candy Store – Giant” for Tuesday’s schedule. Instead of asking “what are we doing today?” she can look at her card and answer her question. Another important card is, “Mom is getting (whatever I forgot to bring downstairs that morning)”, so she doesn’t look around the kitchen 2 minutes after I’m gone and panic why she’s alone.
A common cognitive tool is a memory journal. Bryn Mawr tried introducing this strategy in early 2013 but it was much too early for Corey. At the time Corey could write but could not read any written word. When she began reading, she had no memory of what she read once she hit the period at the end of a sentence. As she progressed, she could write and read and tell you one word she might recall. When the therapist explained she could use a journal to remember daily activities, calendar events etc. and she could look up key facts to help her answer her common questions, Corey went into a rage as to why she had to do this at all!
I knew it was time to switch it up. How can we help Corey feel comfortable with this concept?
-We moved to “Retail Therapy”; reading magazines and circling what items she liked.
-Next step, re-introduction of the notebook concept. Once Corey found the items she liked, she would transfer the information to a notebook to “save” it.
-Next step, reading recipes and transfering the ingredients to a single page. Her focus was on gaining control of writing in a straight line and managing the size of the letters/words.
-Next step, I would stand at the refrigerator and dictate the items we needed to buy for the week as Corey wrote our shopping list. I would deliberately ask her to go back and “check me”…”did I tell you milk and eggs”? This was to break her concentration, redirect her thinking, re-read the list and respond to a directed question.
-Next step, we watch a TON of cooking shows. Caitlin and Corey began “jotting down” their favorite recipes. Corey was taking notes as the recipe was dictated live on the show.
-Next step – trying to increase ‘processing speed’.
We have been working with Dr. A, neuro-behavioral psychologist, since January. We have been trying multiple APP’s on the IPad, old-fashioned flashcards for words and math facts and verbal ques for guessing games to retrieve facts quickly. The computer apps are similar to the childhood game Concentration or Guess Who. The flashcards are basic math facts for addition, subtraction and multiplication, along with basic sight words not for re-teaching but for Beat The Clock…using easy, early-childhood memorized facts, timing how fast and how many you can call out in one minute. This has been more fun for Caitlin and Corey because of my responses. I get so excited being the announcer I call out 6+9…when the card actually says 6+3….Yup, I give the answer in the question. Needless to say, the girls laughter follows with Corey asking me “who has the brain injury mom”?
To highliight why people need a daily organizer (aka ME), we re-introduced the “day-timer journal” for Corey. It is a standard lined composition book. Corey picked out purple with white polka dots. We also bought a purple, blue and pink pen along with purple paper clips. On the top of the page, I write in capital letters the Day, Month, Date and Year. I will be writing what she ate for each meal, our schedule, along with anything she might want to ‘remember’ for later.
This morning, Corey woke up and asked me to “write down” something she wanted to remember for later. This is a HUGE request. She remembered to ask and she remembered there was a book to write in. I opened the book and wrote;
Gluten free
Dairy free
Perservative free
When I asked her what that was for, she told me she needed to look up recipes to add to her cookbook for the people that have allergies to those kinds of foods. She couldn’t name specific people, but she remembered friends of our family have those allergies.
Matter of Time…healing and recovering from a Traumatic Brain Injury has been compared to watching paint dry or watching the grass grow. Today’s request does not mean Corey will suddently and consistently recall her daily activities, and it doesn’t mean she will remember she asked to write something down nor remember there is a book holding the answers for her repeated questions. But it is progress! It’s a small step forward. It’s todays reason to NEVER GIVE UP AND NEVER GIVE IN, xoxo
5yrs; 1 month – transition was seamless…said no one EVER
Hi Everyone,
The Transition was seamless – said no person EVER! – Jena Schwartz
This last month has been a rough one. I’m so grateful for the moments we have that break this crazy world we live with.
Update: (Grab a cup of coffee, it’s a long one)
University of Delaware submitted the written changes for the research program. They are waiting on the IRB to meet and approve them. Once that is sanctioned, Corey can begin working at GoBabyGo Café.
Corey’s headaches have been off the chart this month with Mother Nature taunting us with a lingering warm rainy spring tease on somedays and a crisp introduction to fall just 24 to 48 hours later. The rapid change in temperatures and rain severely affect Corey’s daily function. She has chronic pain that extends to her face, neck and shoulders.
I believe some of the issues are exasperated by her glasses and stress induced jaw clenching.
We met a new Neuro-Optometrist in Lititz, PA. Dr. Collins was terrific! She is the first doctor to truly understand Corey’s processing time. Our initial visit was 3 hours. She schedules that period of time deliberately. Corey needed a few breaks and she needed time to process her answers. We’ve all been to the eye doctor. We all know how confusing the questions can be; “is it better with 1 or 2, now 2 or 3, or 4 or 5”…and then there’s the letter chart. Imagine looking at the letter chart and not remembering how to identify the letters! There was a time Corey could write but could not identify the letters of the alphabet. At times, she still struggles with naming some of the letters given the time, she usually get it.
Dr. Collins had heard of the Carrick program. She was thrilled to hear Corey is continuing her vision and vestibular therapy at home. The vision exercises she is doing has strengthened the horizontal muscles that control her eye movements, however her vertical muscles are still weak. Corey has a natural compensation technique of turning her head to the left as well as frequently blinks to see something close and tilts her head to the left sitting during a conversation and standing to walk. Dr. Collins believes this double/blurred vision. Corey’s head tilt and blinking, sends a message to the brain to reset the framework of what she’s trying to see. The brain adjusts its signal with the tilt. Based on the exam, Corey’s current glasses are overcorrected. That could be the result of her muscles getting stronger too…her vision is getting stronger because of the eye exercises.
Next week, Corey will begin wearing a new Rx with prisms built into the lenses. Prisms are not new, but Dr. Collins has been trained by a Doctor in Michigan that specializes in incremental prisms. To best describe what we mean, Corey trialed prism patches before. It was described to us this way; If prisms were money, she was prescribed 5.00 worth. The prism she needs today would equal .75 cents.
The prism and new Rx glasses will not only help to ‘fix’ her double/blurred vision, Dr. Collins believes she will walk straighter, her facial pain will subside, her headaches will lessen and her vision/vestibular therapy will begin to take off.
Corey will also be going to the dentist. I want to ask about a mouth guard for tension/stress release. This will be an exciting visit. Dr. G has known Corey since she was 2. She was the youngest patient he ever had sit in his chair. He was devastated to see her in 2011-12. She could not open her mouth and she could not communicate. This visit, she will walk in with a cane and gait belt and hold a conversation.
This past month has been filled with transitions. We’ve left Bryn Mawr, we’re finding our new rhythm at home, we’re trying to incorporate our own home rehab exercise schedule and we’re still dealing with sleep deprivation cycles, memory loss and emotional/behavioral outbursts. This is going to come out a bit crass; the bad days suck! They suck way more than we let on to most people and they drain us emotionally for days afterward. By “WE”, it’s me and Caitlin day to day. The not-so-good days are the days that give us the jolt we need to pacify our reasoning and acceptance of living with brain injury. They are also the days we remind ourselves that the not-so-good day was WAY better than the really bad day!
I don’t want to be Debbie Downer, but living with TBI is ugly and heart wrenching. It’s not an incident, it’s a life changing event for Corey, for us and for her friends. Not all days are bad. They typically surface after extended periods of stress, exhaustion, worry and simple fatigue. There are times we watch Corey as she struggles with a task, her loss of memory or physical ability and our heart is pierced with reflections of what she used to do and where she’d be “if” those stop signs were in place 5 years ago. It takes an enormous effort to consciously focus on our gratitude not our resentment when the reminders of her struggles are present in everything she tries to do everyday, all day.
The Neuro-Behavioral Psychologist we see in Philly, weekly, is a gift. She not only helps us develop cognitive strategies for Corey, she counsels us too. Last week she shared a poem written by Jena Schwartz (she inspired the tag line for today’s post). The poem has nothing to do with TBI yet it accurately describes transition for all of us.
Corey is truly amazing. What she has overcome in the last 5 years; she is a living miracle. I also want to give our family a lot of credit on how positive, upbeat and determined we’ve remained in spite of this catastrophic life event. That includes her aunts, uncles and cousins. It also includes our closest circle of friends but also our carepage family. Without your consistent presence, we couldn’t do what we do everyday.
The lessons we learn include acknowledging the days that suck, the days that are not-so-good and the days that we feel defeated. These days are part of the natural TBI landscape. The landscape of any challenge we face. The hard days, at times too heavy to carry, help lift the good days up. Believe it or not they inspire our smiles, the spontaneous laughter, highlight the achievements, and remind us to cherish the moments of pride and sincere joy that we are all survivors! xoxo
Excepts from
The Transition was seamless, said no person ever – by Jena Schwartz
October 20, 2015
The transition was smoother than I expected.
Oh, how I wish I could write that and mean it.
Just pick a big thing and I will tell you all
about it. Here, I will pass around a hat
and you can just choose an event.
The transition was exhilarating, and then.
Wait, there was more.
The transition was empowering, a rush.
The transition was terrifying, an abyss.
The transition was seamless, said no person ever.
The transition was effortless, like night to day
and day to night and poem to spoken word.
The transition was a relief, that thing
we’d anticipated for so long finally
behind us, under our belts, over.
The transition was brutal, like having your chest
zipped open and your heart exposed to air.
The transition was abrupt, giving us no time
to adjust, to prepare, to plan, to consider.
The transition was unexpected, and suddenly
we went from playing pool and smoking cloves
to her being in too much pain even to bathe.
The transition was gradual and then steep.
The transition was much more wonderful
than I could have imagined, after the initial
shock of it.
The transition was sad because it meant
something was over, and happy
because it meant something was beginning.
The transition was a chasm.
If I wasn’t careful, my foot would slip,
the ledge would crumble, and we would all go down.
The transition was a mirror for all of my worst fears
and fantasies, good and bad, grandiose and small.
The transition was elusive,
begging me to close my laptop forever.
The transition was more elating than anything
I will ever be able to describe using words.
It will live solely in memory for all of my days.
The transition was my time to shine,
and the shadow side of that glinting coin
was every question I’d ever asked about myself.
The transition was easy, like I’d known
forever how to stop being shy and how to turn
on a dime and how to embody power and power
and power and beauty and hot ****.
The transition sucked. It was hard. It was lonely.
The transition was stressful and bumpy
and isolated and vulnerable and human.
The transition was so long ago.
The transition was two days ago.
The transition was two hours ago.
The transition was ten minutes ago.
The transitions keep coming, one after another.
I can either love them and close my eyes,
listening as if to waves from a safe spot
on the open beach, or not.
5yrs; Day 1847 – GoBabyGo Cafe
Hi Everyone,
If anyone felt a strong breeze pass over them yesterday, I’m sure it was from the monumental exhale of my sigh of relief! Good news…no GREAT news!
Remember the saying, “When one door closes another door opens”? The last 10 days in the “hallway of opportunity” has felt like a year! We have been waiting with baited breath for the University of Delaware to call us about changing the protocol for their research study. Corey’s cognitive score for the study evaluation did not pass the minimum requirement. Dr. Galloway and Devina, his PhD student, were very disappointed but saw great potential within Corey and believed so confidently in their study, they contacted the Independent Review Board (IRB) asking for an exception to re-write/adjust their study criteria. This would benefit not only Corey but future TBI candidates as well.
The research for long-term rehab progress of TBI survivors is nearly non-existent. We’ve all taken Science classes. Studies typically require a control group. The control group consists of subjects with similar qualities/abilities. The subjects participate in a specific task to quantify the projected results set by an outcome the clinician is trying to prove.
Herein lies the reason most research teams do not study TBI long-term. Brain Injuries are like fingerprints, no 2 are the same. The brain injury research world cannot find a control group. However, studies that are conducted with an ‘outcome-based’ approach are what will break the barriers needed to advance rehab in this arena. If clinicians and scientists create their theories/studies from this perspective, their quest to prove Neuro-plasticity strengthens, rebuilds and creates new pathways (well beyond the 2year post-injury milestone) will open the world of recovery options for TBI survivors.
Dr. Cole Galloway and Devina Kumar are the first two clinicians to challenge this frontier. The explanation of Corey’s abilities in 2 out of the 3 qualifying components was the basis for their request. Their ‘immersion in a workplace environment’ theory for TBI survivors who have advanced from severe injury to moderate injury will advance neuro-plasticity; strengthening physical, cognitive, emotional and behavioral connections for their subjects.
Corey is officially the 2nd subject for their research project in the GoBabyGo Café.
This opportunity will give her the master key to open any door she wants!
We can’t thank them enough! xoxo
5yrs; Day 1836 – visiting first responders
Hi Everyone,
Today’s inspiration came from a paragraph in the Lands End catalog.
Gratitude – There are times when thank you is mostly said as a common courtesy. When someone holds open a door or says bless you when you sneeze. And then there are the times when expressing your gratitude comes from a place so deep, it’s hard to find the right words. Saying thank you for their unconditional support, their unending love, and unlimited kindness can be difficult without sounding contrived or forced. So we show our thanks in gestures – hugs when they’re really needed, an afternoon spent listening (but not offering solutions), or an unexpected care package when you’re far away – because they say, “actions speak louder than words.”
I truly connected with this paragraph. This week has been filled with mutual Thank You’s.
Our week began visiting the firefighters that answered the 911 call 5 years ago. Many of them haven’t seen Corey since the night of her accident; others remembered her ‘rolling’ in on her 2nd anniversary, just learning to speak. Monday night, she walked in with my assistance using her cane. We also met several young firefighters that had only heard the stories of that night. We wanted to thank the men and woman that helped but also wanted to let each volunteer firefighter know how important their job was. Their comment, “we stay with you until we know you’re stable and then we always wonder how you’re doing from that point on. We remember every call”. This visit, Corey spoke for herself. She assured them she’s been working hard and will continue to work hard. She also promised them a dinner as soon as she can use both arms and stand on her own to cook the full meal by herself. They are looking forward to that night!
The firefighters were so thrilled to see Corey, they wrote an article about her and posted it to their website…www.wgfc.org.
The week closed with many more Thank You’s.
Friday and Saturday we were in Brooklyn, NY for the 5th annual Care for Corey Rock and Roll ½ marathon. Corey’s cousins organize a fundraiser within this public race. They run and will continue to run until Corey can join them. This was their most successful fundraising year. The money raised will pay for her continuing vision and vestibular therapy in Texas along with a few alternative therapy opportunities we are trying to arrange now that she has graduated from Bryn Mawr. If you are friends with me on Facebook, Team Corey was 14 strong with a few dedicated members posting virtual runs in other cities because they were unable to make it this year. As the paragraph stated above, it’s difficult to find the words that best describe our gratitude. Every runner, every person that sent a donation, and all the time and effort put into this year’s fundraiser will help her afford therapy we couldn’t provide without the help of every person that participated and donated!
Sunday morning and afternoon we visited with a few more special people. We stayed with close friends of mine from High School and met a woman that played an integral role in getting Corey her handicapped van. Laurie was a childhood friend of my HS friend. She has a non-profit company that raises money to buy adaptive, disabled vehicles for veterans. Her fitness fundraisers have provided 55 free vans to disabled vets over the last several years. My HS friend shared Corey’s story when we were first living at Bryn Mawr. Laurie knew the owner of Ride-Away; an adaptive van company. She asked his help in finding us a used van. That led to our introduction to him, his company and ultimately the purchase of Corey’s original van.
Our meeting with Laurie was very similar to a blind date. She has been following Corey’s story and we have had a few emails and texts over the years. My favorite comment, “you’re both so tall!” We had a lovely visit and we were able to thank her personally for helping Corey and our family. The fundraisers that first year helped us bring Corey home and the van gave us our initial independence.
Next stop – a visit with my Aunt Kay. For those of you that have been following our story and know our family, you know that Aunt Kay is very, very special to me. Caitlin is named after her (gaelic for Kathleen).
Aunt Kay is 92 and still sassy after all these years! I love her motto; “every woman should wear an animal print every day. If she’s not brave enough to wear it on the outside…(she gives a little wink) she should wear it on the inside”! I am lucky to frequently speak with her on the phone but incredibly grateful to spend time with her in person. She was thrilled to see Corey walk into her apartment.
Although the first week in October is emotionally difficult, every year there is more and more to be grateful for. And tomorrow is another day of gratitude…Corey’s 23rd Birthday! xoxo
5yrs; Day 1835 – IRB said yes!
Good morning everyone,
I thought I’d join you for our morning cup of coffee.
It’s going to be a busy day and it’s going to get busier. Today is our weekly appointment with Dr. A in philly and then we drive out to Malvern. Not to Bryn Mawr but to a gym that has accepted Corey into their FIGHTING BACK program. This will be a weekly visit with a personal trainer that specializes in working with Stroke and TBI survivors. The program is located in a community gym, so Corey will be working out with “normal people”, as she says. She is very excited and I’m thrilled she will be getting one-on-one workouts. I’m also looking forward to learning new exercises for our ‘home’ program. This is a private pay program. We’ve applied for their scholarship and hope she will be approved for that as well.
Speaking of approval…the IRB has approved the written protocol changes and Corey can begin working at the GoBabyGo Cafe. Friday we will meet Devina at University of Delaware to repeat the evaluation. It will be Corey’s new baseline. At that time, we will chose the days she will participate in the study for the next 2 months.
To prepare for all of this, Corey has barely used the wheelchair this month. We are now walking in to every store, every appointment and throughout the house using her gait belt and cane. She is pushing herself to walk more, stand more and try to balance independently. She’s soooooooo close. Some days are better than others. Yesterday was a VERY wobbly day. I think the rain has a big part to play. She has had a #6-7 headache (scale from 1-10) for the last 3 days. It’s hard to tell but it could also be getting used to her new glasses. Somethings haven’t changed since she was young…for those of you with children, remember when they’d cry and after you checked all the usual ‘go-to’s’, there was still something bothering them but you couldn’t pinpoint it. Well, brain injury is just like that; there could be multiple causes for every ache and pain and the inconsistancy of Corey reporting it causes me to stay on alert as I wait and watch and wonder what she feels and how to help her.
The most consistant lesson this ‘new normal’ has taught us is to keep one foot in the realm of caution and the other in optimism. Our perspective directs both steps. Our action will decide what that direction will be…we choose to keep moving forward, xoxo
5yrs; Day 1831 – God, is it time yet?
Hi Everyone,
I was once told by a good friend of mine, “sometimes life’s lessons are repeated because the person that’s supposed to learn from them needs practice until they ‘get it'”…I’m guessing my lesson is practicing patience…God…You are a brilliant teacher. You’ve used several examples over the last 5 years, can we move on now?
Devina wrote me this evening. “Unfortunately, Corey’s cognitive score is lower than the required criteria. However, Dr. Galloway and I can see/know the potential she has and we want her to be a part of the Go Baby Go Cafe project. We have requested a change in the IRB protocol for her to be approved as a participant.”
Only Corey could pull off asking for a rewrite of the criteria for a research project funded by NIH!
This reminds me of her sophomore year of HS. Her science teacher was not her favorite. In fact, most of the students had difficulty grasping his manner of teaching. Corey challenged his scoring practices for homework and testing. By challenged, I mean stood up, rallied the other students and staged a walk out. (not a behavior I condoned but wasn’t surprised by either).
She lead her mutiny to the Vice Principal’s office. (He and I exchanged personal cell phone numbers her freshman year…this wasn’t the first difference of opinion with her teachers). The VP led Corey and her posse back to class. They held an organized, thoughtful debate sharing concerns and strategies that the students agreed would be fair. They wanted a more active part in their education and scores. The teacher agreed to consider the requests. By the end of the day I received a call from both the teacher and the VP. Her teacher shared his version of the ‘discussion’ and although he did not agree with Corey’s technique in expressing her opinion, he respected it and decided to change his grading structure. Corey has always expressed her opinion, especially when she believed there was more than one way to do something in order to attain greater results…usually in her favor!
She’s not in the Go Baby Go Cafe project yet….but fingers crossed, and PLEASE keep praying, the request will be approved by October 21st if not sooner.
Her earlier doctors appointments went well. Dr. Ruggiero, was the orthopedic surgeon that performed Corey’s tendon lengthening May 2012. He has seen Corey every 6 months since that date. (keep in mind, his first meeting, Corey was in a tilt-in-space wheelchair, with a feeding tube, and could not speak. Her right hand moved, her right leg could move and she had just started to wiggle her left toe. She had no movement of her left arm)
Today, Corey walked into his office with a cane (with my hands on her hips for guidance NOT support). His nurse brought him out of another room to witness her approach. He started chanting and clapping “COREY COREY COREY” as she walked down the hall to the exam room. He is very pleased with her left leg mobility, range of motion in her left foot and the therapy routine we plan on continuing post rehab. (side note: she has not had botox in her left leg for 6 months)
During our visit we discussed the Carrick Brain Center visit, possibility of joining the Go Baby Go Cafe, working at the Candy Store, and a few other leads I’m working on. We discussed cutting edge procedures and he was thrilled she is in on the ground floor for many of them. Before he left, he turned, held her hand and confidently stated, “next time I see you, you will be walking in here on your own”!
Next stop, Dr. Friedman; botox. Corey’s last shots were in her left shoulder, biceps and forearm to help with pronation (turning her hand palm up). The medicine only works for a short period of time. I was concerned her left arm is locking up and contracting again. Her next shot only lasted half its normal course. Dr. Friedman agreed and had a slight concern. Next shot will be November 4th but next time he’d like to experiment by adding electric stim. He’s hoping it will help the medicine spread deeper and last longer. If it doesn’t…we will cross that bridge when we come to it.
God,
Is it time for recess yet?
5yrs; Day 1830 – University of Delaware research GoBabyGo Cafe
Good morning everyone,
Prayers please,
Yesterday, Corey had a 4.5 hour evaluation at University of Delaware. She did an amazing job physically and with her dexterity test. I watched her try movements with her left hand neither of us knew she could do! I was incredibily proud of her determination. At one point, she was trying to pick up a paperclip with her left thumb and pointer finger. When Devina asked if she wanted to switch to her right hand, she said, “no, I don’t want to give up yet”. She couldn’t complete the task but turned to me and said, “mom, we have to practice this at home”.
Here’s where the prayers come in…
She did not pass the cognitive testing. This is a funded research study so there is stringent protocol on acceptance for their participants. It is a culmination of Physical and Cognitive scores. Devina and Dr. Galloway are reviewing the protocol and will see if there are additional tests that will enable Corey to pass the minimum standards for cognition. She passed the physical. To speak to corey, she can answer questions that verbally describe the written task at hand. To read, recite and remember the “standardized” questions, disclosed there are still connections that need to be strengthened. Devina and Dr. Galloway both want her in this program and will be scouring their guidelines for her.
We are going to begin the home monitoring piece just in case, but we need prayers today to find a way for Corey to retake and/or adjust the testing within parameters.
In the meantime, she heads to the orthopedic and botox doctor appointments for today’s agenda.
I will write later to update you all.
Thank you for your continued friendship, love and support…but most especially for your prayers and positive energy to help us!!
PS, pray for me too….I’m back in ‘prepare for the worst” strategy mode. This marathon takes it’s toll. I feel like I’m at mile 15 somedays and I haven’t passed any runners yet…am I on the right trail?
xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox