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