Day 299 – 1st steps for the 2nd time
Hi Everyone,
Corey had a good day. She and Sherise kept busy with a number of activities. There wasn’t any therapy scheduled for today so Sherise was Corey’s coach on the matte. We had a pleasant surprise when I arrived home. The new Physical Therapist from insurance called and asked if she could come tonight to work with Corey. Guess what my answer was?
Gillian arrived at 5:30. We worked together to help Corey sit on the edge of the matte. We are trying to help her with exercises to strengthen her trunk control and balance. We also worked on weight baring exercises for her upper body. We helped Corey lean to both her right and left side placing the weight of her torso on her elbow and forearm. She then had to push up using her arm to right her upper body to a sitting position.
Then it was time to walk! We helped Corey to a standing position. She can lift her right leg to take a step forward and we help lift and manipulate the left foot. She walked 8 feet in the living room towards the foyer. We helped her pivot to turn and she walked the 8 feet back to the matte. After a short rest, we did it again! It took a ½ hour but she did a great job. Slow but steady!
Corey all it takes is one step; just one step and after that step, another. You won’t do it all in one day. It will take time. But you can do it. Once you take the first step and commit to taking the rest, momentum is on your side. Little steps one after another will help you build your strength so you can take a thousand more!
There’s a saying that when the going gets tough, the tough get going. Always remember when the going gets rough and it seems like you just can’t take another step, you can take it, you can make it, YOU CAN DO IT! You ARE doing it! I’m so proud of you, xoxo
PS-I like the saying ‘when the going gets tough, the tough go shopping’…keep taking those steps and we are soooo going to the mall!
Day 298
Hi Everyone,
Caitlin is a tough act to follow! I love when she hijacks the page!! I can not wait for her night of comedy fundraiser, “Laughter is the best Medicine ~ an evening with Caitlin for Corey”. All we need is a venue. We will definitely have to video tape the open mic night so our friends from out of town can see it on You Tube.
Caitlin hijacked the page because Corey was not feeling well last night and I was trying to work through one of the worst migraines I’ve seen to date. Unfortunately, she was up all night. She did manage to sleep for about an hour. Although Stacey, our night nurse, was with us Corey was so uncomfortable it took two of us to care for her. I’m happy to say, she was much better today and is sleeping comfortably tonight.
Corey had her first dentist appointment today. Dr. Gregory has been our dentist for 17 years. It was tough for him to see Corey for the first time but she did very well with him. She cooperated through the exam and he was pleased to see her mouth care as well as reporting she has no cavities! Corey was grinding her teeth so much in the early stage of her recovery she actually chipped several of her teeth. Everything looked fine within her mouth and the chips aren’t anything we need to deal with at this time. All things considered, he was really pleased to see how great she looked.
Tonight we had a special visitor; Amy our first babysitter from Shepherd Hollow. Amy is all grown up with two children of her own. Spending the evening with her was just as if she were here yesterday. We’ve known Amy for 20 years and she hasn’t changed a bit. (Of course when we introduced her to Stacey we pointed out that she was 4 when she took care of the kids) It was a visit filled with memories and fun conversation.
Corey Amy couldn’t believe how great you looked. You were exhausted and didn’t stay awake long but our short visit was perfect to catch up and share some of your amazing accomplishments with her. It’s always fun for me to see the reaction of friends that haven’t seen you yet. What a thrill it is to share your achievements. We are so proud of you Corey. Rest well tonight honey; time for both of us to sleep. Happy dreams, xoxo
Day 297 – Caitlin Hijack – BAM!
HIJACKED BAM!
My mother asked me if I wanted to hijack the page tonight. When I asked her what I should write about she replied, “Anything you want.” A bold move on her part however she provided me with an opportunity to finally announce to you my plan for the future. I have been diligently putting together some fundraising ideas that I think will gain media attention. After such a break through with the Fox News special, I decided we need to keep this momentum in full motion. Here are a few of my ideas as the new head of Public Relations and Marketing:
The Become a Successful Actor Plan: send out the videos we’ve made and posted on Youtube to all major production companies. Suggest they watch Corey’s breakthrough film debut in “Defying Gravity”. Also mention her accomplished stage career she achieved after playing the role of Munchkin #7 in Avon Grove High School’s production of The Wizard of Oz. Breathtaking.
The Steal Someone’s Identity and Blackmail Them Plan: Target has not yet been acquired. Please send personal messages if you are interested and need more information. Please include first and last name, address, social security number, credit card information, and name of your first pet.
The One Hit Wonder Plan: Write family friendly hit pop song. Song must be playable at birthdays, christenings, family gatherings, weddings, funerals, and bat mitzvahs/bar mitzvahs to maximize royalities/fame.
The Change All of the Words in Existing Hit Song After Failing to Write Own Song Plan: still looking for lyricist. Position requires talented young songwriter who isn’t afriad of listening to Celine Dion on repeat or possible jail time resulting from copyright infringement.
The Hack Google and Replace All Advertising with Corey Propaganda Plan: In need of accomplished computer hacker. Need person(s)* with intimate knowledge of the inner workings of the interwebs.
The Invent Something Really Important Plan: Something life changing or earth shattering. If prototype fails to do this for selected test audience, the back up plan The Invent Something to Sell on Late Night Infomercials Plan will be brought into immediate action.
If you are interested in helping with any or all of these fundraising adventures please contact us and let us know.
Thank you for your help.
And don’t worry, Mom will be back tomorrow.
Caitlin xoxo
*not Al Gore.
Day 296 – miscommunication? REALLY?
Hi Everyone,
A very interesting turn of events as a result of Corey’s news broadcast. Last week Blue Cross made a statement that they were sure there was a miscommunication in information about Corey’s therapy policy. They were sure that I misinterpreted the plan coverage. Plan in hand, I spoke with the case manager and read exactly what was printed out on the papers sent to me by Blue Cross. Our case manager was going to his supervisor and Medical Director to research and resolve what they were sure was an error in the plan. After a week of my calling daily, it was admitted by the case manager that it wasn’t my error but an oversight on his part. Corey in fact has unlimited coverage paid at 100% based on her weekly progress reports from the therapy agency. (Isn’t that amazing…home therapy falls under home care/hospice coverage but is not listed in printed form).
The home therapy company that was working with Corey was not informed of this either and can no longer provide services due to poor staffing; also interesting that they were not initially informed of their unlimited funding to prepare for the length of coverage. Blue Cross was “helpful” in finding a replacement home therapy care agency. This evening Corey began her evaluation process with the new agency. The Physical therapist assigned to evaluate Corey was not only pleased to see what we’ve been doing “on our own” for the last month, she is going to submit and recommend 4 days a week therapy for all disciplines as well. She believes “the more therapy provided the more Corey will continue to respond and advance”.
Simply amazing! Imagine where we would have been if FOX news didn’t report Corey’s story. How many families out there have been told there is no therapy left? How many families are denied their appeals and are forced to settle for their No’s? Every therapist that has come into our home to evaluate/work with Corey has been impressed with the level of progress she’s made. Is it being home? I would agree with this to an extent. I believe it is the intensive “untrained” one on one that we are supplementing to compensate for the minimal hours approved by insurance. Just imagine what Corey and the thousands of TBI patients could achieve if all Insurance companies would approve the “trained”intensive homecare therapy hours that are needed for their recovery. This is what we’re fighting for friends.
Corey’s daily progress continues. Tonight on the matte, Corey independently rolled from her back to her left side and then rolled back to her original position. One of the exercises we practice is the butterfly (this is not the professional name for this exercise it’s a Beattie named exercise). Corey is on her back, knees bent, feet flat on the matte. She opens her knees to full extension (like a butterfly opening its wings). Tonight I held the right knee forcing the left knee (her weaker leg) to pull more from the hip as she pulls her knees to a closed position. For the first time, Corey pulled her left knee towards the center to meet her right knee. This beautiful butterfly is working hard to begin to fly!!
We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty. ~Maya Angelou
Corey we will continue to fight for you. We will not accept NO or the standard answer of”this is good enough”. You keep focused and don’t get frustrated. At times it’s difficult toaccept that it will take time but the life that is ahead of you will be beautiful because of your patience, hard work and determination today. Make no mistake, your inner strength is the beauty that Maya Angelou described! xoxo
Day 295 – NO MATH
Hi Everyone,
Corey is definitely feeling much better than she did on Friday; thank goodness! The beach was fun for me on Saturday. It included a spa afternoon which I desperately needed and today JohnPaul came out to visit.
JohnPaul hadn’t seen Corey in a few weeks. The two of them bonded using the dry erase board. Corey is writing very quickly, in cursive, placing one letter on top of the other. We have to remind her to slow down and take her time so we can read and understand what she’s trying to say.
John Paul wrote his questions instead of speaking them out loud to test Corey’s ability to read. She passed by writing accurate answers. He was very impressed! He also was testing her on harder spelling words which she could spell easily (she was the family speller). He decided to test her further. JohnPaul asked Corey “Okay, Cor ~ what’s 5 + 5”. Corey wrote her answer…NO MATH! We screamed with laughter.
Today a friend was speaking about allowing yourself time to “Play”. She recalled an experience from her childhood and the Joy that can happen from the simplest moments. I was thinking about Corey and her recent achievements. I’m always mindful of all the families that have a loved one with a stroke, ABI or TBI. The Medical world can not tell us what to expect, when to expect it or how our family member will heal or recover. Each day we wait for something new.
The only way to cope is to try tofocus on today. I am guilty of looking at the entire 24 hours. What needs to be done, which nurse is on today, who’s coming in for therapy, what do we need from the grocery/drug store, what appointments do I have for work, what paperwork needs to be completed, did I go through the mail, do I have the list of return calls that need to be made today? This process is consuming and distracting. Today I was reminded that when my ‘Tsunami To Do’ list begins to flood my mind I have to not only look at today but also look at the moment. I have to be present to connect and participate in the Joy of what’s in front of me. That’s the secret that will allow me to find my balance, my joy and remind me ‘how to play’.
Corey when you and I are together, it’s as if the rest of the world doesn’t exist. I look at you and I’m fascinated by what you must think, what your mind is doing to express what’s inside trying to get out. I love to play with you and when you discover something new or surprise me with your sense of humor, I feel a rush of happiness. Sometimes it feels like the original Grinch cartoon ~ my heart grows 3 sizes. This feeling is what I hope all families can share. You definitely know what you want and what you DON’T want. Your ability to express it is the result of the daily interaction between us, the nurses and the therapists. This is what I want for all TBI patients and their families. This is what we all deserve; the opportunity to show us how you’re healing, what you’re capable of and allowing us to share the joy of each experience. I can’t wait to play again tomorrow! xoxo
Day 293 – write it, I “hear” you
Hi Everyone,
Don’t you love how life changes in a split second?!?
I am so grateful that I was working from home today. This morning Corey was doing so well. The Occupational Therapist from the district came to work with her and she was amazed at the progress she’s made in just a few days. Corey even wrote our address for Brittany!
She was having a lovely morning and early afternoon when all of a sudden the nurse came to get me in my home office. Corey was writhing in pain. We had no idea what was wrong. I have a bag packed with essentials and a copy of her medications for emergencies like this. We got her in the van and rushed her to the ER.
After blood work, a number of tests and an ultrasound we discovered she had a ruptured ovarian cyst. Thank goodness it was only that! I’m also grateful that she has begun to communicate via writing. She answered all the Doctor’s questions with a pad and pen I keep in my handbag! As she started to feel better, I was asking her my own series of questions. Corey still has a sense of humor. She told me “my feet hurt”…she actually wanted a foot massage! When I figured out what she was up to, she just gave me that impish smile…Nothin’ like milkin’ it Cor! I was asking her more questions, including “what else are you trying to write”? Her response…Nothing, I’m done. She closed her eyes and took a nap. We are home now and she is resting comfortably.
Corey I can’t tell you what a wonderful feeling it is to be able to “hear” you. I’m so glad you are feeling better and you were able to tell us what was wrong. I have to admit, I was a little scared we might be taking a “new” detour on today’s path, but I feel less helpless knowing you can talk to me. I love you. Rest well honey, xoxo
To all our friends, I may be going to the beach for the day tomorrow so there won’t be an update…unless of course there is a random high jacking of the carepage from Caitlin…you never know!
Day 292 – Feeling questions
Hi Everyone,
It was a fun playful day! Sherise reported a full day of bowling, table tennis, matte time, writing and Tic Tac Toe…Corey won! Tonight a friend of ours came to see Corey. She is a therapist that specializes in hand therapy. She hasn’t seen Corey since we came home 7 weeks ago. Corey waved hello, attempted to say hello but when we started to use the dry erase board, that’s when Corey began to speak with us and my friend was blown away! She was amazed to see Corey writing to express her self.
Corey and I spent some time exercising and focusing on working her left leg and foot. The more we stretch the easier it is to try to flex her ankle. She is very stiff and we’ve got a long way to go but if we work her left side 6-10 times a day, it will loosen up just like the right side did.
Corey is now answering “feeling” questions as well as initiating her questions to us.
For instance;
How was your day Corey? Good
What did you do? Play
What else did you do? Exercise
Corey had a grimace on her face tonight. I asked her how she felt…sad.
Why? Hurt
Where do you hurt? Mouth
I asked her to open her mouth and stick out her tongue so I could see. Sure enough, she bit the side of her tongue!
When I ask Corey how it feels now that I can “hear” her when she writes to me, she gives me a BIG SMILE!
Corey I can’t imagine the frustration knowing what you want to say but not knowing how to get it out so the world can hear you. Your patience with us is incomprehensible. Thank you for giving us time to figure out how we can hear you. Your Aunt Louise wrote us months ago dedicating an old song to you. She thought it could be your theme song. She sent it to us again tonight. I have to say, reading the lyrics I completely agree, xoxo.
I’m coming outI want the world to knowI got to let it showThere’s a new me coming outAnd I just had to liveAnd I wanna giveI’m completely positiveI think this time aroundI am gonna do itLike you never do itLike you never knew itOoh, I’ll make it throughThe time has come for meTo break out of the shellI have to shoutThat I’m coming outI’ve got to show the worldAll that I wanna beAnd all my billitiesTher’s so much more to meSomehow, I have to make themJust understandI got it well in handAnd, oh, how I’ve plannedI’m spreadin’ loveThere’s no need to fearAnd I just feel so gladEverytime I hear:I’m coming out…
Day 291 – Spelling Bee
Hi Everyone,
The letter A – first letter in the alphabet. How many words can we chose that would represent Corey? Amazing, awesome, awe-inspiring, astonishing! These were just a few of the words I would choose to express the last two days with Corey. Once again, this young woman has shown us that “she’s in there”!
I purchased a dry erase board and doodle pad at the local store for Corey. Last night we sat next to each other with the pad in my hand and the crayon in her hand. I asked her to write different letters. Although she drew them one on top of the other, if you watch her hand motion she was forming the letters!!! I asked her to spell MOM without verbally prompting the letters. She wrote the word without hesitation. I wanted witnesses! My sister Diane called and we decided to Skype.
I placed the computer on the kitchen table to our back so my sister and her family could watch Corey (over our shoulders). I held the pad upright. In addition to writing letters of the alphabet, I asked her to write Peter (her uncle’s name). She did w/o prompting of the individual letters. I asked Corey to write Diane and she remembered the D-I-A then paused and looked at me…I told her N-E and she completed the name!
This morning I gave Sherise an update on last night’s spelling bee. On my way home from work tonight, I called to check in. Sherise was ecstatic! She shared with me that “Corey is definitely ‘in there’ and she’s starting to come out”! “She can spell anything you ask her too”! She asked Corey to write the following words; Cheerleading, surprise, dog, cat, happy, sad, bubbles, yes, no etc. Sherise was amazed; she spelled every word without prompting of the individual letters.
Our district OT brought a calendar for Corey. Sherise was placing the numbers chronologically on the calendar and asked Corey what number came after 3. She held up 4 fingers. Sherise had the dry erase board on Corey’s lap. She asked Corey to write the numbers in order and Sherise would put the stickers on the calendar. Corey wrote the numbers from 5-20 and didn’t miss the sequence!
The following were just a few of the questions Corey answered with a written response;
What’s your mom’s name? Corey wrote my name
On Valentines Day, is it hot or cold? Corey wrote Cold
In the summer, is it hot or cold? She wrote Hot
What’s your sister’s name? She wrote Cait
What’s your brother’s name? She wrote JohnPaul
When’s your birthday? Without hesitation she wrote October 13…
THIS IS WHEN I SCREAMED FOR JOY IN THE CAR!
Corey there is a reason the letter A is the first letter in the alphabet…your daily “firsts” are truly Amazing! After I hung up with Sherise and continued my drive home, my thoughts were racing with all the accomplishments you’ve achieved in just 7 weeks. In my minds eye I was replaying images of you in the ICU and Rehab. I allowed the stream of conscience to advance to what we’ve seen at home. You have overcome too many obstacles for one person,and youcontinue showing us what you know, what you’re thinking and what you’re capable of. “Admirable” another wonderful word to describe you.
I was speaking with a parent of a TBI survivor tonight. He reminded me of advice he received; “Never, Ever Give Up and Don’t Stop Trying New Things.” I allowed myself to think of September. Hopefully you’ll be going back to school. What will you accomplish with daily stimulation? For a split second I was saddened by the thought that you wouldn’t be joining your friends preparing for college. At this point I had reached the exit for home and as I pulled to the top of the exit ramp there was a car in front of me with the sign I needed to see at that very moment…a college decal on the back window…JOHNSON WALES UNIVERSITY. I smiled and consoled my heart…’don’t be sad Mom, it’s going to happen’! People ask me how we do this everyday. Today I was reminded again ~ you are my strength. You continue to show me what is possible. Thank You! xoxo
Day 290 – FOX national news story
Hi Everyone,
I am so grateful to Fox News. The talent of our producer was evident in his ability to edit 9+ hours of footage to 3 minutes giving the audience a compelling story. We are hoping that Corey’s story will reach the media and political arena’s to be the catalyst of change for continued intensive rehabilitation that thousands of TBI patients deserve.
When we were in Bryn Mawr Corey was receiving 18 hours of therapy a week. When a patient is released from the acute care hospital setting to a sub acute or skilled nursing facility (nursing home) therapy hours diminish to 4-6 hours per week on average. This is standard and based on a national average of patients that improved as an inpatient in the acute care hospital.
What about the patients that don’t improve as quickly? What about the patients who have a severe injury that are compared to the mild or moderate injuries? They are sent to the step down or home care setting; frequently they are re-hospitalized due to the lack of clinical care and often regress due to the drop in therapy hours. Insurance Companies are deciding what is best for the patients based on their profit margins.
I went before the Appeal committee again this week. Dr. Long prescribed 3 hours per day of PT/OT/ST for 5 days over an 8 week period for Corey. Blue Cross only allows 30 hours of therapy (collectively) per calendar year. We exhausted those hours in the first month. When our primary insurance is exhausted, Medicaid then covers the hours. However, Medicaid’s Medical Director denied Dr. Longs request and approved 6 hours per week for 4 weeks. That’s based on the “national average” and they feel is “adequate to continue Corey’s progression in her recovery”. Corey has been receiving 6 hours of therapy/week since we’ve been home. She is NOT improving at the same rate as she did in Bryn Mawr. In fact, she has increased foot drop as a result of not receiving enough PT and she is having increased difficulty in swallowing and managing her saliva as a result of not having enough ST.
When I go to an appeal, I sit across from two medical directors, an appeals mediator and on speaker phone is a third medical director and Case manager. They give me 15 minutes to plead my case and present any evidence to support my argument. Once completed, the Medical Directors are free to ask me questions. Their decision is made by the end of that business day however; they do not call with their decision. The Appeals Board will send a formal letter by US Postal service which will arrive within 5 business days. In the meantime, Corey is without therapy until the decision letter arrives. If I disagree with the decision, I can enter a 2nd and 3rd level appeal. Once the 3rd appeal is heard, the decision is final. PS-the insurance companies make it a practice to say NO three times. Most families give up by then…NOT THIS FAMILY!
The direction of Healthcare is to shorten the length of stay in an acute facility. The direction is to move the patients care towards home and/or skilled nursing facilities. In our case, we are happy to have Corey home. Corey, like so many TBI survivors, are clinically stable and cannot remain as an inpatient in the acute care setting. The issue is they still require the acute intensive level of therapy but in the home or skilled facility setting. That concept is unheard of! This is why it is so important to write our Senators and Congressman. TBI patients must receive at least 12 full months of therapy to maximize the “window” of healing and regeneration of the brain. The 12 months we speak of is after the 6-12 weeks of healing from the bodily injuries the patients typically sustain. Unfortunately, the Insurance Companies start the clock at Day One. We need our Senators and Congressman to hear that this is unacceptable.
It is our goal to bring awareness to this issue. As I’ve said before, this is not just Corey’s fight. This is the fight of thousands of families that are denied coverage and are determined to help their loved ones regain the life they dreamed of. For the families that are doing the best they can to accept, cope and fight their way through the recovery process, “surviving” is more difficult than being told of the initial accident. If the broadcast can help one family, it will be worth it. Corey, you’re a Star! xoxo
This is an Article from FOXnews.com; http://www.foxnews.com/health/2011/07/18/brain-injury-injustice/
Day 288 – a “real” chair
Hi Everyone,
Those of you who know Corey will not be surprised by tonight’s post. Those of you, who are getting to know Corey via these pages, I’d like to assure you that this young woman has full cognitive and strategic abilities!
We didn’t have a nurse today so Mom is on duty from 8am to Midnight. Aside from the clinical care, that also means PT/OT/ST and Cognitive stimulation throughout the day.
Corey is getting much stronger on the matte. She is now lifting both her hips off the matte to “bridge” (a cheering move). She is attempting to roll to her side. Her left leg is significantly toning but if we work out long enough, we can get the muscles to warm up so she can fully extend her leg. She is also moving her left toes in a more defined movement. They are increasing from the “flinch” status to a real move…the goal is to wiggle those left toes.
Corey had some difficulty standing today. She couldn’t maintain her stance for very long. At one point she leaned forward in her wheelchair towards the kitchen chair. I asked her what she was looking at. She pointed to the kitchen chair. I was a bit confused wondering what exactly she was looking at…it’s not that interesting. Then I realized, she wanted to sit in the chair! She confirmed my guess and so we did. I was nervous but I also know her well enough that if she wants to try, we’re going for it!
It was the first time Corey sat upright in a “regular” chair. The back of the kitchen chair hits mid back. Corey had some difficulty maintaining her posture and had difficulty holding her neck and head but was able to sit upright for almost 5 minutes.
We went for three walks today, played Toss Across, created a new table tennis game, tried to write her name, played with photo cards to match with written words, watched the Philles, baked a cake and visited with neighbors. Our girl keeps busy!
When she’s not stimulated, that’s when she gets into trouble! My Mother would refer to her as “Gazinta”; she’d ga-zinta everything…this is the part that won’t surprise most of you. When Corey is bored, she will pull at her hair, pull at her feeding tube and try to rip/grab her clothing, kick, throw etc. Needless to say, stimulating activities are a constant (typically there’s no watching TV in our house!) As I was giving Corey her 2pm meds, she was grabbing for her feeding tube…Her new nickname; ”Quick Draw Macgraw”. Corey has molded arm rests for her wheelchair. They each have Velcro straps to secure her arms. Normally we do not use the straps. I became frustrated with her fighting me to grab her tube. I told Corey that I was going to strap her right hand to the chair if she didn’t stop grabbing the tube as I was giving medications. She smiled and continued to pull. On went the strap! For a split second I had relief thinking I could out smart her and finish the task at hand without stress. In that split second I forgot I was dealing with Miss Houdini! With the broadest smile to date, that little bugger pulled her arm back from the elbow and slipped her hand right out of the restraint and grabbed the tube. I knew I was finished!
This is a humorous story but think of the strategic planning it took to execute that movement. It’s such a shame some consider her to be low functioning! Leave it to Corey to defy the statistics and rewrite them!
Corey I had a lot of fun today. Spending time with you is wonderful. I find that I am learning as much as you are, as we come up with new games, exercises and try new ideas. I’ve said it before and stand ready today…you lead and we’ll follow! Happy dreams sweetie, xoxo