1yr; 6months – empathy and compassion
Hi Everyone,
It’s been a busy weekend! Caitlin is taking a quarter off and has officially moved home. The last four days have been filled with cleaning, purging, pitching, packing and moving not only her things but her roommates as well. If you need to pack 10lbs of “stuff” in a 5lb bag, I’m your girl! I’m also skilled in maneuvering a 16’ truck through the streets of south and north Philly. Our forefathers did not design those streets for moving vans! The surprise came today when we both hit a wall of physical exhaustion. I must admit I actually took a nap this afternoon (I refuse to say that I’m getting too old for this anymore). Corey is thrilled to have Caitlin home. Every time she hears the littlest noise she points, bright eyed and smiles as she states, “I hear Caitlin”.
Corey has been speaking more everyday. It still surprises me to hear her voice as well as her thoughts. Last night we were watching Toy Story 2. There is a scene about one of the characters, Jesse, growing up with her human but as the little girl became a woman she outgrew her doll and she was left behind to be sold at a yard sale. Corey looked at me and spoke a long sentence I could not decode. I asked her to speak slowly saying one word at a time. That helps but there are still words she can not enunciate so we move to the whiteboard. She writes her sentence and then I can understand.
I was shocked to read her reaction to this scene, “I want them to comfort her and hold her hand”. This small sentence is actually very complex. Watching the movie, processing the scene, showing the emotions of empathy and compassion as well as communicate her thought intellectually with the spoken and written word draws from multiple areas of the brain; primarily the Frontal and Temporal Lobes crossing both sides of the brain! This is an amazing development.
We are looking forward to seeing Alice, OT, tomorrow. Corey is ready to show off another first discovered yesterday. She is moving and lifting her left arm across her body, trying to pull it up to lift as well as push out to straighten the arm. It’s interesting to watch her right arm as it flinches to assist the left but she stops herself from “cheating” so the left can move independently. She uses her right fingers to assist her left thumb to release its tucked position in her clenched hand; once released her left fingers can spring open. My favorite part of this movement is not her hand opening but the way her smile beams across her face and her eyes light up. Her joy and pride is contagious!
Corey I love to watch you enjoy the moment. You work so hard; yet, most times, you are happy as you are working through the challenges. You seem to enjoy the process and you get better, stronger and more productive every day. Your eyes tell the story. They dance, laugh and smile with each achievement. You continually remind me to stay in the moment and truly enjoy it as its happening. Thank you for centering me so I don’t miss the little things and appreciate the big things! I’m so proud of you, xoxo
1yr; Day 544 – “I don’t know HOW”
Hi Everyone,
Today was a better day for Corey then yesterday. Diane is very impressed with her increased control while swallowing. As Corey advances with her ability to chew and swallow her speech is improving daily as well. Her formation of words, voice strength and enunciation is startling! Although she still struggles with many words, she is beginning to speak in sentences and her development is accelerating. Diane is scheduling another swallow study next week to advance Corey to soft solid foods.
Corey’s PT sessions have been very difficult this week with Gillian. She has been extremely frustrated. When she reaches her breaking point she will pull her hair, bang her arm and kick her right leg. At times she’s hit and kicked Gillian and me in the midst of her rage. If she’s standing, she bends at her waist stomping her right foot refusing to stand as she bangs her hand on the island counter. When we ask her what’s wrong or why she’s upset, she says “I don’t know”. We have to talk her through her rage and she ultimately pushes through to complete the session but it’s rough for her. Gillian and I feel her internal torment and it’s an emotionally draining session for all of us.
Yesterday’s session was particularly tough especially without my help. Today, however, was a very good session. In fact, it was one of the best sessions she’s had with Gillian in two weeks. Corey begins the session with stretches to warm up. Our nightly homework of stretching her left leg is becoming evident. We call it our ‘4 count’ exercise. Her left leg is fully extended in the resting position. (1) She lifts her leg at the knee to 90 degrees. (2) Tries to straighten her leg vertically pointing her toe to the ceiling. (3) Bends her leg downward heel to butt. (4) Extends the left leg horizontally to full extension. Corey is now following the count in a fluid motion. Keep in mind, two months ago she was just beginning to wiggle her left toes and one month ago raised her left heel off the matte one inch!
After her matte exercises we moved to the kitchen island. Gillian put a piece of medical tape on the floor to use as a visual balance beam. Corey’s right foot must stay on the line which gives her the correct spatial distance between her feet for proper balance as she walks. Corey walks 5 feet, she sits in her wheelchair, we roll her back and she repeats the one way distance 4-5 times. Then Gillian faces her flat against the counter to side step right then left 2-3 steps in each direction.
She was getting extremely frustrated with the side stepping. Gillian told me yesterday that Corey told her, “It’s not working”! Today’s frustration yielded an even more amazing comment. When asked to step left, Corey became outraged, looked at us and yelled, “I DON’T KNOW HOW”!
Corey when I think of the progress you’ve made in the last 16 months, today’s statement spoken clearly and with such conviction was truly the most miraculous of all your achievements. I know you are frustrated. When you are asked to follow a command you have to hear it, process it, try to remember how to execute it and wait for your body to move. There are times your mind knows you’re following the command yet you watch your limbs remain motionless. For the first time that I’ve witnessed, you were able to verbalize what your mind was processing. This level of cognitive understanding is much more significant than you give yourself credit for.
It’s not easy waiting for your body to catch up to your mind but its happening Corey! Everything is slowly firing and reconnecting. It may not be exactly as it was before but that’s alright too. You may not know “How” to make your body take that step but your willingness to keep trying until it does is what keeps you moving forward. Your ability to express your self compounded with your motivation and determination is the force behind “HOW” ~ and “YOU WILL” make it happen. I’m so proud of you! xoxo
1yr; Day 543
Hi Everyone,
Today Corey and I were apart. I spent the morning in Philly with Caitlin preparing her to move home. This afternoon was spent emptying the basement to set up her new apartment. We found one treasure after another which led to stories, laughter and extra exercise running upstairs to share everything with Corey.
Tonight we had a sing-along and a dance party! Both girls are looking forward to many more nights together, but for now it’s time to put these weary bones to bed.
Happy dreams, xoxo
1yr; Day 542 – still fighting insurance coverage
Hi Everyone,
It was a brand new day. We picked up our big girl pants and focused on moving forward towards the next hurdles.
We have been informed that the agency that provides Corey’s PT/OT/ST home based therapies is planning to discharge her as of April 13th recommending her to outpatient therapies with another agency and/or rehab.
I’m sure you are wondering how this is happening with all the progress Corey is making. Blue Cross found this agency for us. The critical mistake that BC made was telling this agency in June that it was a short term assignment and Corey would be going to school in September. School was then expected to pick up the services from that point on. Who ever misinformed this agency was scrambling to find ANY agency so they wouldn’t look bad on national television (they miraculously found this agency just as Fox National News aired Corey’s story).
9 months later, the Medicare based agency that does not typically see non-Medicare patients for long term care is ready to discharge her. When I pressed them as to why they are insisting she be discharged when she’s obviously making progress and yet not physically ready, they told me it’s because they are losing money each time they come out to provide Corey’s therapy.
First of all, Corey does not have the stamina to withstand outpatient services at this time. It is our goal to get to outpatient but she’s not there yet. Secondly, Blue Cross found this agency back in June because there is no other agency that will service our area with the therapists necessary for her rehabilitation needs (TBI rehab is not the same as “ordinary” rehab therapy). Third, there is no facility that houses all therapies with TBI experience within 1 hour of our home, so we will have to try to find 2 or 3 facilities that will service her. This is not feasible for one major reason…Corey can not physically handle the round trip commute or exercise session. She currently is getting 3 services a day in our home utilizing the agency and her school therapy team. If we take her to outpatient, her fatigue level will only allow her to handle 1 session maybe two per day. Unfortunately, none of these reasons truly matter to the Administrators making their decisions because it’s once again all about making money NOT progress.
It was a very busy day as I was strategically planning our next battles. I went to a local advocacy company to become better educated on the licensing and coverage of Medicare patients vs. Medicaid/Insurance patients. I’ve made an appointment with the Director of the Cerabal Palsy Foundation to better educate me on the State funding, waivers and grants available for TBI patients. Finally, I’m thrilled to share that as a result of meeting Senator Dominic Pileggi at the rally, his office called to set a meeting to discuss my concerns to change legislation for insurance coverage for acute care length of stay and the acute level of rehabilitation coverage for all TBI patients. We will be meeting in Harrisburg with two of his staff lawyers on April 9th.
Something needs to be done but it has to be appealed in the proper manner. We can not react emotionally. We must respond with facts, statistics and a sound presentation to support our argument for continued home services vs. outpatient services.
Corey has been struggling with fatigue. Her progress is the direct result of increased intensity of each therapy session throughout her day; this is natural and normal. This is also why we schedule her services with a few hours between services so she can rest/nap. There are days that her fatigue from an intense session still wipes her out for the afternoon sessions but the team adjusts to Corey’s in home schedule.
Today was no exception. Corey had two naps before Jen arrived for her afternoon PT session. After the girls warmed up on the exercise matte, Corey clearly stated to Jen that she ‘didn’t need to learn to walk, she can walk’. Jen assured Corey that she would one day but in the meantime, she would help her. I was working on a project in the basement during this time. Jen placed the immobilizer on Corey’s left knee and tied the ACE bandage around her foot tying it to her calf raising her toe up so the foot drop wouldn’t inhibit their walking.
Corey was holding onto the walker, Jen standing directly behind Corey supporting her hips. As they worked their way down the center hall from the living room to the kitchen, I heard a loud scream come from Jen and our nurse. I ran upstairs to find all smiles…Corey lifted her LEFT leg to step through for an independent step forward. She then transferred her weight onto the left, took a step with the right foot, transferred her weight to her right leg and pushed through moving her left foot forward for another step. She took 7 independent steps with her left foot/leg today!
Corey had 7 months of intense rehabilitation in the acute care facility of Bryn Mawr. (We began our weekly fight to stay in the acute care facility after 2 months). Once we were discharged we fought for the same hours of services for in-home care to continue what we knew would lead to steady recovery. Today’s step, 9 months later, is the culmination of her progress that only the acute level of in-home rehabilitation can provide! Out-patient is coming, but for now the services provided in-home are enabling Corey to gain the strength, stamina and ability to progress towards her independence outside our home.
CONGRATULATIONS Corey! We are so very proud of you! xoxo
1yr; Day 541 – Get through it
Hi Everyone,
Everyday I try to share the positive progress we are making. Everyday there is always something new to celebrate. Everyday is not perfect and upbeat but we plow through it.
Then there are days that are tough; compounded by circumstances beyond our control. When there are several days that seem relentless, tough days then get unbearable. The last two weeks, especially the last two days reflect the latter. People ask me how we stay so strong and positive. The honest answer is some days are easier than others. This journal doesn’t highlight those days but they exist; sometimes hour by hour and minute by minute.
About a year ago, I posted Corey’s last English paper. It began with ~ Everyone has heard the saying “When life hands you lemons, make lemonade.” However hearing something and doing something are two very different things. In the real world when life hands you lemons you don’t want to make lemonade, you want to throw them at someone, usually whoever handed them to you.
Today was one of those days. There are a number of meditation exercises I use to break the chaos in my mind as well as physically removing myself from the situation to relieve the stress in my body. All attempts failed today until I went to my computer and began searching for inspiration. Have you ever been so desperate for an answer and heard just what you needed to hear or read something that seemed to be written for you at that very moment? The following was my answer;
Get through it
On the other side of the challenge is value. Get through it, and get the value.
Though the effort makes you weary, it also makes you strong. Get through it, and enjoy the full benefit of that strength.
You’ve already made it this far, and you’ve already established some good momentum. To get through it, just keep going.
Keep going, though the urge to quit may be strong. Keep going, get through it and get the rewards you’ve earned.
Get through it, not by fighting but by accepting and persisting in each moment. Get through it, not with resentment for what you must do but with gratitude for what you can accomplish.
You have what it takes, because what it takes is simply making one step, and then the next, and then the next. Step forward, get through it, and bring your own unique value more fully to life ~ Ralph Marston
Corey there are days we need to pick up the lemons and throw them back at the people that handed them to us. When we run out of the strength to throw them we need to sit, breathe, relax, find the sugar and make lemonade.
We continue to add to your list of achievements. I know acceptance and persistence is hard but we will keep fighting because what is on the other side of this is worth fighting for. Keep Going. We can get through it! xoxo
1yr; Day 539 – Corey’s Corner
Hi Everyone,
It was a beautiful amazing day despite the cold wet weather. More than 60 community members, family and friends turned out to support Corey and try to affect change. Senator Pileggi rearranged his schedule to come by and meet us. State Representative John Lawrence not only helped to organize the rally he showed up with a large banner sized printed sign and bullhorn.
I’d like to thank everyone that came out in the rain, everyone that contacted their respective Senators, Congressman and/or State Representatives. Thank you to Ashleigh Frezza (Corey’s girlfriend) for starting the online petition that posted over 1,000 names and testimonials in just two weeks. Thanks to all who signed it! Now we need to send those contacts Thank You notes…
Our voices were heard and PennDot listened! WE WON!!!!
PennDot will be adding a Stop Sign to 896 north/south + an extra sign at Den Road a few hundred feet before the intersection to stop traffic. This is an interim solution until the road is fixed and a permanent traffic light is installed.
It was an emotional, overwhelming day yet rejuvenating. How often do we think that our pleas are falling on deaf ears? How often do we quit before we even get started thinking that it won’t make a difference so why bother?
You voice, your support, your efforts do make a difference! Each of you is part of today’s success story. Thank you so much for your part. Together we have helped prevent future accidents.
Someone asked me, “What’s next”?
My response was, “we’re going to Washington to change legislation for acute care length of stay and rehabilitation coverage”. Who’s with me? xoxo
1yr; Day 538
Hi Everyone,
Today was a day of rest. I’m not sure that’s a good thing, I’m actually a little worried about Corey. She was very tired and slept for the better part of the day/evening. She has been eating so well but today didn’t seem to have an appetite. She did get physically sick this afternoon which can happen. She receives her medications with water in her feeding tube. If they are administered too quickly, she gets sick. It could be that or it could be she’s coming down with something. I’m trying not to read too much into it but I can’t help but fear she’s preparing for another seizure as I’ve noticed some changes in her behavior. Days like today have me on edge as if I’m holding a live grenade…when is it going to explode?
We are looking forward to tomorrow. My friends from Connecticut are arriving in the morning and Corey’s girlfriend from Long Island will be coming down for the rally. We hope Mother Nature will hold off on the rain between 4:30-6:00 pm, but rain or shine we’ll be there to show how important this is and what it means to our community.
Time for sleep; rest is a vital component to heal both of us. Happy dreams xoxo
1yr; Day 537 – everyday is a surprise
Hi Everyone,
It was another busy day! Corey has been doing so well with her ability to swallow pureed food that Diane suggested we try “soft” foods. So I wiped up scrambled eggs with cheese and homemade French toast w/syrup. Guess which one Corey chose? Bon appetite…she ate a ¼ piece of French toast and loved it! This afternoon for lunch she had the scrambled eggs and tonight she tried cubed peaches.
Now that she’s working on pureed and soft foods our options are growing. I will be making many of her foods from scratch as we’ve been noticing her feet swelling from the sodium count in some of the foods. It’s been 17 months since she’s had any canned or processed foods. I’d rather make homemade and add the fat/salt to taste than risk the chance of her swelling and possibly forming any type of blood clot. It’s actually the perfect solution for her to keep on cooking; besides, she has to get ready for the Johnson & Wales entrance exams.
Corey had a good day with Gillian. She started in her wheelchair with some stretching exercises. Gillian asked her to march with her right leg. This means as she is in her chair, she lifts her right knee up then down. Gillian asked Corey if she wanted to do 5 or 10 repetitions. Corey said she wanted to do 2. She then proceeded to lift her leg twice, counted 1 for the first rep, paused then lifted her leg twice again, counting 2 for the second rep. Leave it to Corey to double the count!
The most remarkable was the left leg. Corey raised and lowered her left knee for a total count of 20! Then she decided to get fancy by lifting her knee and kicking her leg out to a full extension. Gillian loved it.
Next the ladies walked with Corey’s hand guiding her along the counter in the kitchen. She stood in front of the sink to dance (rocking her hips back and forth), took two side steps right and two side steps left (with Gillian manipulating her left leg) and then took a stroll with her walker. As she rounded the corner at the island, Corey used her right hand to reach over and take her left hand off the platform handle. She then pushed the stroller away and said, “I want to do it alone”. Unfortunately, she’s not quite there yet, so Gillian held her hips, manipulated her legs and I held her arms as she took 3 more steps towards me. I love that she thinks she’s ready to run…Lord help me when she is ready!
Corey, as Gillian says, ‘everyday is a surprise with Corey’. I’m so proud of you for working hard and taking risks everyday.
~ The irony is that the person not taking risks feels the same amount of fear as the person who regularly takes risks ~ Peter McWilliams
Taking risks everyday is absolutely necessary if you’re going to be successful. Unless you are willing to take risks and fail miserably, then pick yourself back up to try again, achieving your goal won’t ever happen. Thank you Corey; for pushing through the fear to see what you can do rather than not taking the risk because you’re afraid to even try.
I love you, happy dreams. xoxo
1yr; Day 536 – You can You WILL
Hi Everyone,
There have been a few people in the last 17 months that have told me the fight for the length of stay in rehab, insurance coverage, change in legislation for healthcare reform and getting a light installed at Corey’s intersection is a fight bigger than me and Corey. We are the ants pushing the boulder up hill. Our singular voices can’t be heard.
Everyday there is a new problem to resolve. Everyday someone is telling us all the reasons that our goal cannot be reached. Everyday someone is telling us NO.
Fortunately for us we don’t take NO from someone that can’t say YES!
I will agree with some of the naysayer’s; this is definitely bigger than Corey and me.
It’s HUGE ~ because we have all of you pushing that boulder up hill with us!
I’m writing to tell you that we ARE being heard. Senator Pileggi’s office has called me twice this week to follow up on phone calls that have inundated his staff. State Representative Lawrence was approached on the House floor by a colleague in Elk County, near Pittsburgh. He was handed several copies of emails about Corey’s Corner. Senator Tartaglione, Senator Casey and Senator Toomey of PA, called to see how they can help. Senator Gillibrand of NY and Senator Blumenthal of CT called us as well. Our online petition has over 1,000 signatures in just two weeks.
For those of you who are local, our rally will be held Saturday, March 24th from 4:30 to 6:00. Please come early and park at Cornerstone Presbyterian Church parking lot. Walk across the field to the 841/896 intersection. Please make a sign to bring with you so we can line the road to send the message; “Slow Down”, “We Want a Traffic Light”. Feel free to create your own sign; get creative and colorful! State Representative Lawrence will be in attendance and Senator Pileggi’s office is trying to arrange his schedule so he can join us at 4:30. Please tell your neighbors and friends. Please go online and sign our petition, post your personal experience.
Together we will make a difference. “They” are right…but we don’t listen very well…perhaps they should hear us…YES WE CAN!
Now onto the most important part of our day ~ Corey had another amazing first! She was having a difficult morning and I had to call to push back her ST/PT sessions. Gillian arrived at 12:30. Corey was not cooperating and did not want to walk with the walker, stand at the sink or participate with her session. We coerced her into standing at the beginning of the kitchen counter with her right hand guiding the length of the counter to the sink, then to the stove, turning to step towards the island, continue across the length of the island and back to her chair by the kitchen table. She walked this distance without her walker. It gets better. For the very first time (twice within that distance) she lifted her left knee raising her left foot off the floor to take a step and follow through. We literally screamed out overjoyed to see her take her first steps with her left leg.
Corey there will always be people in your life that will tell you all the reasons why you can’t, shouldn’t, couldn’t and won’t accomplish whatever you decide to work towards. It’s just their opinion not your reality. Don’t ever give up and don’t ever quit. You are literally taking steps everyday towards your dreams.
You can
You will
You are making it happen.
I’m so proud of you, xoxo
1yr; Day 535 – Brain Injury; Concussion and Beyond
Hi Everyone,
Today I attended a seminar hosted by Brain STEPS. The Brain Injury Association of Pennsylvania, under contract from the PA Department of Health and partnered with the PA Department of Education, has created the Child & Adolescent Brain Injury
School Re-entry Program called Brain STEPS (Strategies Teaching Educators, Parents, and Students). Brain STEPS is working to make sure that those who provide educational support to children with brain injury have a good understanding of the effects of the injury, the resulting challenges, and supports and interventions that will help these students achieve educational success through graduation.
The seminar was titled Brain Injury ~ Concussion & Beyond. It was fascinating to hear more about the brain, which parts of the brain control our emotions, movement etc. The seminar addressed strategic approaches that we can try to enhance the current therapy programs we are utilizing. We are extremely fortunate to have the therapy team currently working with Corey. It is also obvious that communication between the team members for clinical (insurance), educational (school district) PT/OT/ST and Teachers (or Cognitive Therapy) is a critical component to the TBI recovery process. It is also imperative that we educate our nursing staff with the affects of TBI. One example required to be explained is impulsivity which is often misunderstood as a behavioral issue rather than the residual effect of damage to the frontal lobe. I mention this because today’s nurse had an extremely difficult day with Corey while I was attending the seminar.
The damage to Corey’s brain will not heal in the manner to which we understand “healing”. TBI is not a broken bone that sets within 6 weeks. It also does not present or recover in the same fashion for multiple individuals. Each person’s injury is unique as is their recovery. What works for one will not work for another; it’s a life long process.
We all have 180,000 pathways in our brain to learn and absorb new information. We only use 53,000 pathways in our lifetime. Picture a road map in your mind. It has main roads and back roads all interconnected. Now imagine a severe earthquake. The roads are not only blocked, they are torn and disconnected. Corey had a diffused axonal injury. That means that all the pathways (or roads) were severed throughout the entire brain not just one area. As she recovers, the brain is remapping new routes. We see that remapping as regaining the ability to speak, swallow, develop muscle movement etc., the brain is rerouting the messages; finding new roads to get to the new destination.
What is fascinating is when the brain shows partial connections. For instance, Cognitively Corey can communicate with written answers but she can not recognize the letters of the alphabet. This is just one example of what we are trying to learn and work with as we try to help Corey regain every aspect of her life.
Corey’s jetlag lessened a bit today but she is still showing signs of fatigue and demonstrating extreme agitation due to short term memory issues; another side effect of TBI. This is especially difficult when it comes to her eating.
She is enjoying most everything we try but unfortunately she has no memory of when she eats nor does she seem to be satiated. She is constantly asking to be fed stating, “I’m hungry”. When we try to explain that she’s already eaten, or redirect to distract her, she gets extremely frustrated yelling “No, I want food!” and then will flail her arms and kicks her legs. (I call this stage the terrible two’s).
We have to be very careful of the quantity of food she receives. She hasn’t eaten real food in almost 18 months. We can’t just let her jump into a full course meal. In addition, she is not mobile enough to counter balance the increased calorie count with exercise. We are definitely moving into a new phase of our journey…it’s not a smooth transition.
This being said today Corey hit a new milestone. Instead of pureeing Mac & cheese, she ate the noodles as is (the noodles were overcooked rather than al dente). Diane observed her chewing and swallowing. She was pleased to see Corey’s control and has now approved us to try soft (mushy) foods…break out the vegetables!
Corey everyday is filled with new challenges, detours and deadends. I read a passage tonight I want to share with you.
Achievement often appears easy in hindsight and from the outside looking in. Yet significant achievement is not easy and is not without considerable problems and frustrations ~ Achievement is done when no one is paying attention. Those who achieve, do the work even though it is difficult, demanding, tedious and far from glamorous ~ Working through difficult challenges is, in fact, what creates achievement ~ It’s not extraordinary talent that distinguishes achievers, but rather an extraordinary level of commitment to getting the work done. ~ Ralph Marston
This is what I am most grateful for Corey; the level of commitment from you and our support team. You are working hard each day and it is difficult, demanding and tedious. Your frustration is warranted. What you do day in and day out is just plan hard. But don’t forget we are here, committed to working with you; providing what ever we can to help facilitate your ability to remap and reroute your development. Keep working honey. Don’t forget what you told me…it’s a “matter of time”, xoxo