1yr; Day 708 – Life happens through you
Hi Everyone,
Today I spoke with a very old friend. We’ve corresponded via Hallmark birthday cards for the last 3 years. We both have had significant life changes since the last physical phone call. The reunion was filled with the typical factual updates, laughter and sadness at some of the changes ~ then the conversation got real. Time and distance were no longer a factor. My mother used to say, ‘a true friend is someone you may not see for years but when you do, it’s as if you saw them yesterday’. She was right…
He commented that it continues to surprise him that we never know what direction our lives will take from one day to the next until our world changes. How many days do we take for granted?
Corey I’ve been thinking about this statement all afternoon. Someone said to me ‘Life happens to you’. I disagree, Life happens through you ~ we determine how to respond to those events and circumstances; that’s what determines the outcome.
Every day we are interacting with people and accomplishing tasks. Living is intentionally directing our energy to appreciate the people we meet, never losing site of the people we love and the tasks that fulfill us.
Events and Consequences will continue to happen but it’s up to us to respond with love, faith and purpose. Those actions will help us through anything life decides to throw at us.
Happy dreams, xoxo
1yr; Day 706 – message to the runners
Hi Everyone,
This coming week Corey will be preparing for the next step in her recovery using the Lokomat. The statistics show in just 6 sessions there is a marked improvement in a patients independent walking.
Corey’s goal is not only to walk but to run. Her cousin Christy convinced her to train and run a half marathon in September of 2011. Corey went to the race, not as a runner but a spectator in her wheelchair. Her cousins Christy and Kerri decided to organize their friends and family members to run for Corey as a fundraiser. The money raised has helped us with many of the therapy tools we use at home.
They have decided to run this race every year until Corey can run with them. Next Sunday the team comes to town for the 2nd Annual Run for Corey (a private fundraiser within the ING Race in Philadelphia). Her cousins have put together a training schedule and networking forum for the runners to stay in touch during their hot summer training to keep Team Corey motivated.
The girls asked me if Corey could write a note to help psych up our runners in the last week of training as well as all the people following this effort…here’s what she said:
Marie – “What do you want to say to the runners running for you”?
Corey – Dear runners, Good Luck. Do a good job. Thank you so much for running for me. I can not run yet, but I will run soon.
Marie – “If you were their coach, what would you say to motivate and inspire them”?
Corey – When you are tired please keep running for me so I can run with you soon.
Please keep running to inspire people w/brain injury so we can run with you.
Run for me to the end and I will see you when you’re done. When you are afraid you can’t do it, keep running. You Can!
Love Corey xoxo
1yr; Day 705 – Lokomat
Hi Everyone,
Today was a big day for Corey. We have been working to build her strength, stamina and communication so she can try a new walking therapy. Bryn Mawr has a machine called the Lokomat. It is a robotic treadmill. Tuesday was her first day in the harness without the leg fittings just to see how she’d do. She was terrified and overwhelmed at first. We spent the first 40 minutes calming her down and reintroduced her to the machine and the room it’s in. She walked for 5 minutes. Caitlin used her cell phone to video tape the first session. We’ve casually shown it to her Wednesday and this morning to keep the memory fresh for her.
Today she had her second trial. Corey walked for 7 mins. She not only appeared to improve her steps, she enjoyed it without any hesitation! Natalie took the second half of the session to measure and fit her with the cuffs and harness so next week she’ll put on her “super suit” and go for a moon walk.
Bryn Mawr has not given us permission to film and post her session for the public to see. We are hoping they will not only allow us to film her but perhaps they will film her to promote this amazing machine as their marketing piece. (I’m negotiating)
In the meantime, rather than explaining the machine and therapy benefits, I’ve attached a YouTube video that will introduce the next phase of her recovery. We are very excited…ENJOY! xoxo
1yr; Day 704 – we have a choice
Hi Everyone,
Corey had two good afternoon PT and OT sessions. Brittany, OT, loves the schedule change for Wednesday’s. She arrives towards the end of Jen’s PT session and can finally watch Corey in action.
Today Corey and Jen played soccer. This was a very impressive session; Corey primarily used her left leg. She sits at the edge of the matte, lifts her knee slightly to pull her foot back (for the wind up) then follows through to hit the stationary ball placed in front of her. I was the goalie. As I watched Corey concentrate on each incremental step all I could think of were her inpatient days when she moved the right leg playing the same game. That was February-May 2011. Today, August 2012, she stood up to kick the ball alternating feet. At one point Jen asked if she needed a break and wanted to stop; switch activities. Corey said, “No, I want to do more”!
Brittany not only witnessed Corey’s soccer skills, we also had the chance to utilize the standing frame during her session. The first half of their session the ladies stood to chat as Brittany and Corey worked on arm exercises (Corey is a fabulous personal trainer for us). The standing frame has an extra large desk top. The second half of the session, we collapse the frame to a sitting position and the ladies utilize it as a chair/desk for their activities. It was a good afternoon.
Watching the ladies work with Corey and watching Corey smile and interact with her therapists and teachers; I can’t help but pause and think of all the people that have helped us throughout this journey. We are not only grateful for our team but for all the fundraising events that have helped us purchase the tools, games and machines that are necessary to assist Corey on a daily basis as she continues to recover. (Check out the gallery)
Every person that has read this page, cut/pasted to share her story, attended a fundraiser, visited, called, skyped, sent a greeting card, email, text or simply said a prayer for Corey has helped her in more ways than you will ever know. Thank you to all of you!
Corey you remind me that we have choices; we can sit and be an observer or we can take an active part in every moment of our day. You made your choice again today ~ “No, I want to do more” ~ You inspire me to stand up, take a step forward and live my day, Thank you! xoxo
1yr; 11 months – peel back the onion
Hi Everyone,
Two weeks ago I mentioned working with the Bryn Mawr team on a behavioral plan for Corey as well as increasing her sleeping medication and adding a new medication that we hoped would help temper her reactions as she moves through the Rancho stages. We began the medication change on August 23rd.
Her sleeping varies each night but she has begun to get 4 straight hours at the beginning of her sleep cycle. For the balance of the night, she is still waking with anxiety that I am not with her and/or she does not recognize where she is. The medication seems to help her fall back to sleep a little easier once she is comforted.
The medication for her temperament is beginning to work also. Corey’s volatile reactions still occur but are less frequent and less explosive. Unknowingly, this medication was tested this weekend. We had an overnight nurse that is typically a ‘fill-in’; she’s only been with us two nights the month of August. She missed the notation for the addition of the new medication. Corey did not receive her 6am dose Saturday morning; the result ~ the day was brutal. I couldn’t understand what caused the change in Corey to revert back with increased outbursts. I couldn’t console her for the better part of the day. Something inside told me to check the medication list. Sure enough, her new medication was not signed off for the morning. The good news is we know the medication works when it’s given! She was much more pleasant throughout the evening.
A behavior plan identifies certain behaviors you’d like to alter along with the steps that will be followed by all involved parties to ensure consistency towards an appropriate end result. Each plan is specific for the individual; however, there are certain standard procedures the TBI ward uses for patients that move through the early stages of the Rancho scale. Most patients exhibit these behaviors while they are an inpatient at the acute level of care.
15-20 years ago 70% of the low level TBI patients returned home with their families. There were many more services available at that time to assist families as they worked through theses stages at home. Currently, 30% of low level patients return home with their families and there are very few services available to educate, train and support families with the Rancho scale reactions.
Physically, Corey is making great strides as an out-patient despite her fatigue as she develops increased stamina and strength. Cognitively, she still needs the intense support of the staff at the inpatient level. Continuity of care is critical as we move through the stages and behavioral plan. Unfortunately, families and home care nurses often do not have experience and/or exposure to TBI or the Rancho reactions. As a result, we are having difficulty staffing our case therefore leaving me as the only consistent caregiver. Our plan will be trialed at Bryn Mawr with the understanding that we do not have the same support at home.
Part of the behavior plan is to wean Corey from me to work with other individuals. At the moment her volatile responses are ignited from separation and stranger anxiety. Her confusion is due to severe short term memory loss. Although we are implementing the plan, she does not remember her outbursts seconds after they are silenced.
The plan is not exclusive to Corey. It is written for the caregivers and therapists as well. Our responses directly correlate to Corey’s reactions. The goal is to develop a cohesive link between the two parties.
The greatest difference in Corey over the last year is her ability to communicate. July 2nd, 2011 we discovered she could write. By September/October she was signing. Early January 2012 she began to whisper words and by spring she had a voice behind her breath. Today she is not only speaking in sentences, she is initiating questions and at times responding with profound thoughts at higher levels of analytical thinking and emotional reasoning.
The typical behavior plan would follow this path; When Corey has an outburst, remove her from the task, put her in a “quiet place”, set a timer and explain to her that she can not return to the task until the tantrum is over. The caregiver will leave the room and wait for the tantrum to silence and/or the timer runs out. I disagree with this method for Corey.
Corey has severe short term memory loss and confusion for people, places and time, but I believe she has a greater cognitive understanding with the inability to retrieve the words to express her emotions. At home, we have been working through the tantrums with verbal prompts and communication. The last week we have been trying our communication plan during her PT/OT and ST sessions.
Here is an example of today’s conversation as we began a new walking exercise;
What’s wrong? ‘I don’t know’
Are you frustrated, angry or scared? ‘Scared’
Why? ‘I want to go home’
Why? ‘I don’t want you to leave me here’
Do you know where we are? ‘the hospital, Bryn Mawr’
Do you know who this is? (Natalie) ‘no’
Natalie is a physical therapist. She has known you for the last two years. She is the person that helped teach you to walk again. You are very safe with her and I’m going to work with you and Natalie. I’m not leaving.
Do you understand what we are doing? ‘no’
(we explained the details of the exercise and demonstrated the activity)
(Corey lashed out again) Are you frustrated, angry or scared? ‘frustrated’
Why? “My left leg won’t work” ~ (LIGHT BULB MOMENT)
“No problem…we can help your left leg”!
Corey completed another first…she walked on a treadmill for 5 minutes!
Corey, communication is the bridge to the connections you are rebuilding! You know what you want to do and how you used to do it. The trick is how are you going to do it now? The answer ~ keep talking to us. We will help you find the path that leads you in the direction you are ready to move towards, xoxo
1yr; Day 697 – Super Senior
Hi Everyone,
Today was Corey’s first day of school. She is not a sophomore in college but a 2nd year super senior in High School.
We are very fortunate to be receiving PT/OT and Cognitive/Educational services from our school district. For those of you that are unaware, Corey’s accident was one month into her senior year of High School. Since she did not graduate, she is eligible for many different services through her 21st year. Between the district and Insurance, this is how we’ve been able to ensure Corey receives the same quantity of services she would have been receiving as an inpatient at the acute care rehabilitation hospital.
Normally a patient receives 18 hours of rehabilitation services weekly as an inpatient at an acute care facility. Once the patient improves and/or regains functional movement they move to a sub-acute facility where they will receive up to 6 hours of rehabilitation per week. If a patient moves home, if they have insurance coverage for home therapy, if they continue to show measureable improvement, they typically receive 3-4 hours of therapy per week (the hours stated are from insurance coverage only).
Corey’s TBI was diagnosed as severe (low level function). My argument with the rehab hospital and insurance was a patient at the low level can not improve with 3-6 hours of therapy per week. Along with the natural course of healing, they must receive a minimum of 15-18 hours a week to regain functional improvement. As you know, she was admitted 10/22/10 and we were discharged on 6/1/11 with the label that she had functionally plateaud.
We have not relented in the last year to prove our hypothesis. You have been reading the documented proof of her incremental progress. This is the evidence we are taking to the State and to Washington to fight for funding for ALL TBI patients (especially low level patients) to continue to receive the acute level of rehabilitation post hospital stay.
Today’s additional documentation;
Our school team did not see Corey from May 8th through June 12th. They had a few weeks through June and early July before the extended school year coverage ended for summer break. During that time, Corey was readmitted to the acute care facility receiving the maximum rehab hours. We continued with 9 hours 3 days per week in Out Patient.
Two days per week we have district services. We were introduced to a new team member, Beth. She will be working with Corey on Language education, memory, etc. Christa will continue to incorporate Math with our cooking therapy, Brittany is our OT and Jen is our PT. The ladies were thrilled to be back. Corey was very happy to see them as well and couldn’t wait to show off her “new moves” since their summer break.
Brittany and Jen had adjacent sessions. Jen was thrilled to see Corey’s walking. In fact it was too nice to stay inside. The ladies walked from the matte in the living room, through the front hall, into the kitchen, down the ramp to the family room, out to the back deck and down the outside ramp to sit under the shade tree. Brittany hadn’t seen Corey walk in person and was amazed. Corey also showed Brittany how well she is moving her left arm. In fact, we all witnessed another first. Corey is beginning to lift her arm raising her elbow. She can straighten her forearm and wave her hand. Today, for the first time she retracted her forearm moving her hand towards her face and was able to touch her nose without leaning her face forward to cheat!
Beth also witnessed a first. We played tangrams (matching shapes/colors to a picture). Corey reached with her left arm to retrieve a shape from my hand, strategically moved her arm to the area the shape matched, opened her hand to drop the piece (much like the claw in an arcade game) and correctly placed the shaped piece on point with the right hand.
Corey there is a saying; you only get one chance to make a first impression.
I remember listening to a motivational speaker, Dan Gottlieb, 6 months into your recovery. He, too, is in a wheelchair after an accident. He commented that when a stranger looks at him, they see his wheelchair, not the man that sits in it. I think of that statement almost everyday. You are often misjudged in the same way. There is so much within you that is waiting to burst out. “You’re in there” ~ you know it and the team knows it. Your determination and hard work to regain your strength and abilities will prove it to the rest of the world! There may be some temporary boundaries but there are no limits once you break through them. Keep “showing off” honey, you are making lasting impressions! xoxo
1yr; Day 727 – passed swallowing “thins”
Hi Everyone,
We have a happy surprise to tell you. Not that we’ve been holding out on you but…
The past two months Corey’s been working on swallowing thins. This is the last step before she gets her feeding tube removed. This morning she had a comprehensive video swallow study.
Dr. Brooks has been with Corey since her first study. She was always amazed with the prior tests but this morning when she saw Corey for the first time since March, she was shocked at how great she looked. Corey wasn’t speaking in full sentences when we saw her last. She was blown away by the young woman that sat in front of her.
We were lucky to have Diane (our original Speech Therapist) with us for the test. Diane hadn’t seen Corey since April. I reminded Corey that Diane was the person that taught her to speak again. Diane was thrilled to hold a conversation with Corey!
Corey sits in a chair sandwiched in a large x-ray machine. A television is placed in front of her with a live skeletal picture of her head and neck. Diane mixes barium in assorted foods. She hands the samples to me and I, in turn, prepare the appropriate size portion to hand to Corey. Corey feeds herself and we watch the x-ray TV as she moves the food to the back of the throat and then we watch her swallow. The x-ray captures any residual food that doesn’t “go down the right pipe”.
First was Honey thick liquid on a spoon.
Second; a graham cracker dipped in the barium.
Third taste test; fruit cocktail on a spoon.
Fourth sample; Nectar liquid ~ a syrup like consistency.
Fifth; thins on a teaspoon. Corey then has to drink from a cup and the grand finale; sip through a straw. She passed all levels!
We are not going to rush to take the feeding tube out just yet. She has to increase her liquid intake to 64oz/day. So far she’s at 20 – 24 oz. We need the tube for hydration only at this point because the 2nd piece to this achievement is ~ Corey has been taking her medications crushed in yogurt for a few weeks. Surprise #3 the last two days she has successfully swallowed smaller pills by mouth with a water chaser!! This is a MAJOR, MAJOR accomplishment!
Congratulations Corey…that tube is next to go! So happy of you, xoxo
1yr; Day 696 – learning to walk away
Hi Everyone,
Despite a little more sleep last night we are beginning to see the fatigue patterns in Corey’s day. The morning session 11-12 is tough but she is doing very well during the 2-3 session. We are going to try to keep PT in the afternoon.
Corey did very well with Natalie today. In fact, Natalie commented to Corey, “are you working with anyone else when I’m not around”? Her steps were more fluid today than yesterday. She was kicking through and stepping heel-toe. In fact, today for the first time the girls didn’t need me to hold the Moses stick.
Normally Corey will place her hand at the top of the 6’ stick. I position my hands on the pole at her chest and hip height. After Corey steps with her left foot, I move the pole forward a steps length. She transfers her weight to her left leg in order to lift and kick through with her right. Her right hand/arm utilizes the pole as an upper body support. Today, Corey not only held the pole but moved it forward herself with each step, I stood back and watched.
Corey, my last memory of you before the accident was kissing you goodbye and watching you walk out the side door. Watching you walk away from me today gave me the greatest joy I’ve felt in a very long time. You are on your way to being independent again! This is not easy work. Every minute of every day and every step takes effort. You’ve always had the choice to sit back, make excuses and not participate. What a waste of time and energy! Look at what you’ve accomplished by standing up, stepping forward and surpassing everyone’s expectations.
Never give up and never give in ~ you keep walking towards your goals and you’ll make your dreams come true…Johnson & Wales…she’s coming, xoxo
1yr; Day 695 – favorite sister moment
Hi Everyone,
Today’s post is all about Caitlin. She surprised us with the news that she re-arranged her work schedule today and tomorrow so she could be with Corey at Bryn Mawr (she traded two single days for doubles this weekend)
Corey loves spending time with Caitlin; having her sister with her helps get her through her sessions at the rehab. Unfortunately, Corey was awake at 3:30 this morning so OT at 11am was rough due to fatigue. Her rest time and lunch helped her rally for an awesome PT session at 2pm. The girls walked almost 400 feet, worked on balance exercises and took several steps on the staircase. Corey was all smiles as she showed off for her sister.
When we got home, we decided to do something special for Caitlin. While Caitlin was in her room, Corey gave Jamie, our nurse, and me 20 reasons she’s grateful for Caitlin. We wrote each one on a small piece of paper. I ran out and bought helium balloons and we attached each note to a balloon. Corey was in the middle of the bouquet as Caitlin came up for dinner. She opened the door to the kitchen, Corey called out “SURPRISE” and Caitlin cried! Check out the gallery and we hope you enjoy the link on youtube.
Corey it would be unrealistic to ignore the difficult parts of our day but it’s very important to fill the other moments with reasons to smile and appreciate all the people, places and fun times we do have. Caitlin, you’re at the top of the list! xoxo
1yr; Day 694 – put Balance on the ToDo list
Hi Everyone,
The weekend get-away was awesome! We had an easy paced, relaxing visit. Our last visit to Louise and John’s house in December 2011 we propped their son’s skate board ramp against the staircase leading to their front porch. It took several men to help hoist Corey in her chair up the steep incline. Quite an ordeal! This visit, Corey could stand up out of her wheelchair, walk to the flight of stairs and climbed up and down with me, our nurse and Uncle John as the spotter. What an amazing achievement in just 8 months.
On Saturday Corey had more practice with the front steps. We left my sisters house for the afternoon and made it to the beach; first time in 2 years. Corey is the whitest white girl you’ve ever seen. We didn’t want her to resemble a lobster so we kept her comfortable under an awning and enjoyed the ocean breeze that kept us cool during our stay. It was a beautiful day! (Check out the gallery)
I could say that the beach was our favorite part of the weekend but I think visiting with Papa and several of the NY cousins would definitely top the list!
Sitting at the beach, listening to the waves and enjoying conversation with family throughout the weekend reminded me to “look at everything that is right with our life”. We all have bad days, challenges that are all consuming and moments of complete despair. This weekend reminded me that it’s important to take a break from that daily routine.
A healthy person has a balance of Mind, Body and Spirit. Exercise and/or Therapy is critical for the body. Family, friends and being present where ever you are and appreciating the moment is the key to mind and spirit.
Starting tomorrow, we will be scheduling “Balance” on the daily “To Do” list! xoxo