2yrs; Day 759 – Queen of Distraction
Hi Everyone,
We are very lucky. We never lost electricity, the roof and the basement didn’t leak and we survived Sandy!
Corey and I have tried to keep very busy the last several days. Today we had some moments that were touchy. Let me rephrase, “I” had some moments that were challenging me. I’m ashamed to admit it but there are times my exhaustion ignites my impatience and controls my reactions.
If you are a parent you may remember the days that seemed never ending. The days the kids didn’t stop saying your name repeatedly and pelted one question after another. Corey’s tantrums are definitely improving but her short term memory is still a significant challenge. I have become the Queen of Distraction but there are days despite my creativity that she does not waiver from fixating on one topic, question and/or action. Most days I can handle it but when we’ve been isolated for several I must admit, she’s breaking me.
When the kids were younger and I would begin to lose my temper, instead of counting to 10, I would close my eyes and whisper; “I love my children, I love my children, I love my children”. If I said this mantra out loud, they knew they better leave the room before my eyes were opened. Unfortunately, this trick currently doesn’t work with Corey.
So once again I find myself trying to isolate the one word that affected me today; Impatience. I went searching for my quote of the day.
Three hundred years ago a prisoner condemned to the Tower of London carved on the wall of his cell this sentiment to keep up his spirits during his long imprisonment: ‘It is not adversity that kills, but the impatience with which we bear adversity.’ ~ James Keller
I’m not comparing myself to a prisoner but some days feel like a life sentence. Today’s quote helped, along with talking to my sister! It all circles back to perspective. We have been working with Corey on her temper with a specific behavior plan. Tonight I used it on myself.
I stepped away, closed my eyes, took several deep breathes to release my frustration and started to fold laundry while Corey ate her dinner. Her questions were not silenced by my momentary break but did inspire the Queen to come up with a new distraction.
It was my turn to ask the questions; first we played “Would you rather”. I got quite creative with her choices which helped us both relax. Her response to this question made me laugh out loud; “would you rather have a personal chef or a personal masseuse”? Corey answered, “a personal masseuse”…”I’m going to be a chef so I don’t need one of those”.
Then we played Disney 20 Questions. She had to pick a character, place, or thing from one of the Disney movies. Our first round was great fun. She wrote her character name on a piece of paper and I had 20 questions to guess who, where or what it was. She picked Mulan and she won. Round 2 was more challenging. Although she picked Aurora (aka Sleeping Beauty) she forgot she picked Aurora and answered all my questions with responses that were correct for Mulan! My last question was, “would you rather keep playing or go to bed”…fortunately, she opted for bed.
The silence that fills the house as the Princess sleeps is often the remedy for the Queen to relax, regroup and release the day. Tomorrow we will try again…happy dreams, xoxo
2yrs; Day 787 – just keep swimming
Hi Everyone,
We work with Corey on rebuilding the connections for her short term and long term memory daily. I can usually tell how old she thinks she is by her memories and the questions she asks. Today she was 17. Our conversations included memories from the summer before the accident; this is the closest she’s come to her last few months so far!
We stopped at our local grocery store on the way home and happened to meet Chef Young (one of her professors from the culinary arts program at the VoTech – Vocational Tech High School). This is the first time Chef Young has seen Corey since he and Chef D visited her at the hospital. He not only loved seeing her, but he was most excited to hear her voice again and hold a brief conversation.
When we returned home, Corey was filled with questions about her friends and college. It’s very confusing and upsetting to her that her friends are not home but she is. I can’t imagine what it must be like to have so many shattered memories unable to piece back together. Can you imagine going to sleep and waking up 2 years later?
Thank goodness for Facebook! We jumped on and looked up each of her friends. She loved looking at the pictures and she asked to comment on some them. She wanted to write to them as well. She dictated and I typed verbatim. Good news; Christmas break is only 2 weeks away for most of them.
In the meantime we will continue to research strategies and techniques for reconnecting and strengthening her memory. Corey, it’s going to happen. We tease you right now by calling you Forgetful Fran or Dori from Finding Nemo but even Dori remembered 42 Wallaby Way. You can do this! Look at everything else you’ve overcome! Just keep swimming, swimming, swimming…xoxo
2yrs; Day 755 – counting feet
Hi Everyone,
Happy Friday! I will be signing off for the weekend but before I do we’ve got more progress to report.
PT/OT/ST has their goals and Corey has hers. She wants her feeding tube out and she wants to stop her daily Lovenox shots given in her belly.
We’ve mentioned she’s passed her swallow study and she is eating and drinking whatever she’d like. The next hurdle was taking her medication. Corey initially graduated from crushing, mixing it in water and administering through the feeding tube to crushing, mixing it in yogurt and feeding them to her self. Now she is consistently taking her medication in pill form swallowing up to 9 pills with four ounces of water. Tonight she showed off by swallowing some without a swig of water (even I can’t do that!)
Second goal; no more shots! The Lovenox is given daily to prevent blood clots from inactivity. They are not painful but they do bruise her abdomen. Dr. Long told her she had to be walking 150 feet per day before they could stop. Corey told us this week that she wants to walk every where…no more wheelchair = no more shots!
She’s not walking independently yet. She is still considered “a one person assist”. She does well with her right leg and her left leg is getting more movement but she still needs another person to stabilize her body as she walks. She is not standing independently quite yet either. I stand behind her holding her upper torso and right arm for stability.
We’ve measured her typical route through the house;
From her bed to the chair lift = 15 feet
From the chair lift to the kitchen table = 31 feet
From the kitchen table to the bathroom = 21 feet
From the toilet to the sink = 4 feet
From the sink to the chair lift = 40 feet
From the kitchen to the bed in the family room = 26 feet
It’s not as easy or fluent to move about the house, but Corey is getting stronger (as am I). She will soon achieve her goal of 150 feet on her non-Lokomat days as long as we combine the list above to include two bathroom trips, a nap and her return route upstairs for bedtime. At the moment, Corey and I are averaging 80 to 100 feet as we practice and develop our walking skills together!
Although I mentioned that Corey is not standing independently yet, tonight I tried something new. Normally as we prepare her for bed, we transfer her from the toilet to her wheelchair, wheel her to the sink, she reaches with her right hand to turn on the water, she washes her face, brushes her teeth (I spot check) then we wheel her through the kitchen to the chair lift and up we go to bed.
Tonight she walked from the toilet to the sink (4 feet). She stood at the sink, extended her left arm to use her left hand to brace her self, turned on the water with her right hand, I assisted with dispensing the toothpaste and (for the first time) she stood at the sink to brush her teeth. When she was finished she washed her face. She stood for 21 minutes without leaning against me! She cleaned the sink area, turned off the lights and together we walked her route to the chair lift.
You might be thinking ‘why is Marie recounting this simple ritual with such detail’? Please consider the detail…each individual step within the process is a tremendous accomplishment. When I watch Corey’s deliberate movements I am so grateful she is in fact ~ moving! I think back to just six months ago teaching her to swish and spit the toothpaste from her mouth. Watching her care for her self, beginning to show signs of living independently is one of the most exhilarating experiences I’ve had the privilege to witness in a very long time.
It’s not unlike watching your child learn to pick their body weight up to balance on their arms and legs. They then begin to move one knee and alternate hand as they learn to crawl. Soon after, they pull themselves up to a standing position. You hold your breath as they let go and watch them take their first step.
I have often thought, since the accident Corey is an infant again. She is relearning everything ~ for the 2nd time. I jokingly add that the recent challenge with her behavior is part of the Terrible Two’s!
Corey last week you told me you think about what you want to do and you keep trying until you do it. Your motivation; “I know I did it in the past so I can do it again”. I can’t imagine what it’s like to “Start Over” but you are showing us how to achieve whatever you set your mind to with tenacity and persistence. Your willingness and patience are just two character traits I know I try to emulate each day.
Thank you for inspiring me daily, xoxo
2yrs; Day 752 – persistence is key
Hi Everyone,
Today was an unexpected day off. Medicaid approved 24 more visits for PT but we haven’t been approved for additional visits for Speech or OT…yet! I’m not sure if the requests were sent in late or if “they” are deliberating to see if Corey “needs” additional services. I can’t imagine that she wouldn’t be approved for additional visits given the Functional progress she’s made in all areas but we all know thinking logically and dealing with insurance should never share the same sentence.
Having the day off was actually a blessing for all of us. Corey pushes her self every day. The 2 hour daily commute, the (2) one hour sessions, (due to short term memory loss) interacting with “strangers” and physically being in a facility that is “new” to her each time she enters can be exhausting.
She is not sleeping through the night which is also a challenge to push through her day. I have moved into her room 5 nights a week which is a challenge for me to make it through our daily routine as well.
Corey fell back to sleep at 8am and slept until almost 11! She had Brunch in Bed and after a few episodes of America’s Next Top Model, she took a nap.
I allowed myself to take off the boxing gloves and not make 15 phone calls trying to resolve the approval issues. Sometimes fighting against what already is just slows you down. Sometimes it’s more important to take a day to let it go, stay in the moment and release the stress. What would the fight accomplish today but add to our fatigue.
Some day’s you have to use what you have; as flawed and imperfect as it is, and focus on doing the best you can with what you’ve got. What can we do today without services?
Everything we do is therapy; dressing, eating, walking to the chair lift, cooking dinner, researching recipes, singing, listening to jazz, folding/sorting laundry, emptying the dishwasher, writing thank you notes, typing on the computer and even playing with the cats and our dog.
Corey, if we wait for approvals rather than live in the moment, we will miss the opportunity to take advantage of what we do have. Persistence is the key, regardless of whether we have a support team or not. Each day we have to start from where we are with what we have in front of us. Sometimes that means we’re on our own, but we know what we have to do to get the job done. As long as we do the best we can there will never be a limit to what we can accomplish…we don’t need an approval for that!
Happy dreams, xoxo
2yrs; Day 751 – our ‘getting better’ anniversary
Hi Everyone,
Corey is celebrating her “Happy Anniversary of Getting Better”!
It was 2 years ago today we moved from the ICU to Bryn Mawr rehab. Corey and I talked about the difference between that drive and the drive we took today. Back then she rode in the ambulance and I followed with my sister-in-law Marjy. I remembered feeling numb, walking into the facility knowing I had to completely trust strangers to take care of her. Brian and Nick were her primary nurses. Each had 20+ years on the low level wing of the Maple unit. They sensed my fear, worry and doubt but tried to reassure me by sharing why they stay at Bryn Mawr; they have seen miracles happen on that wing.
I didn’t realize then that these strangers would quickly become our family. We lived together for 7 months. They were there 24/7 to laugh, talk, council, cry, educate and encourage us to keep going forward. We are most grateful today that our friendship has continued and grown despite our Out Patient status.
After Corey’s therapy session with Natalie, we went up to the Maple Unit. We visited with Brian and all our nurses and techs. We went into the gym to visit the PT’s and OT’s. Many of the therapists haven’t seen Corey since her last discharge, June 12th. They were pleasantly surprised. The staff was thrilled to not only see Corey but hear her speak and interact with them. They see so many patients in the beginning stages of their recovery; it’s exciting to see “what’s happened” for them when they go home.
In Corey’s case, she is one of the miracles Brian and Nick spoke of 2 years ago. They all looked at her in awe, telling her stories about what she could and couldn’t do. She smiled and would occasionally say, “No way”! They would laugh out loud and assure her they were telling the truth. She saw her old room and told me she likes her room at home better, then she panicked a little and wanted to go home (I think she was worried we were staying).
At times Corey’s progress seems to crawl at a snails pace. I didn’t trust what Brian and Nick told me 2 years ago. I didn’t believe them after 7 months when it was time to head home. Trust takes time and patience ~ neither is easily attained when you’re facing a challenge. It isn’t until we step out of our circle that we are truly reminded of the astounding changes that have occurred. (Check out the gallery for the before and after image)
Corey when someone you trust tells you that everything is going to be okay, it can give you comfort. It often helps if you repeat their words out loud. It creates an image in your mind helping you to believe it and accept the concept.
Reminding yourself that everything is going to be okay doesn’t mean you deny the challenge you’re facing. On the contrary, it can give you confidence and the faith that will help carry you through it.
By reminding yourself that everything is going to be okay, you actually encourage yourself to take the steps to make it true. Will everything turn out fine just because we say so? Of course not ~ but it will help to give us strength to work through whatever challenges we’re facing.
It’s the power of positive thinking. If we envision a positive outcome we won’t be overwhelmed by our worst fears and doubts. If we say it out loud, than we can make it happen. Ready….xoxo
2yrs; Day 750 – Jesus said, “keep going”
Hi Everyone,
Corey continues to progress physically and despite her short term memory loss we are witnessing increased moments of normalcy and clarity with her cognitive development. At times we can hold fluid conversations that truly reflect her personality and her sense of humor.
This weekend we had many surprising conversations;
She was trying to convince me she hadn’t eaten breakfast (she frequently forgets).
M – “Yes honey, you did”.
C – “No, I’m sure I didn’t”
M – “You had cheesy eggs, toast and pears”
C – After a long pause she added, “Well obviously it wasn’t memorable”
We were listening to Natalie and the PT Tech discussing their confusion about who removed the straps to the Lokomat and how they were attached incorrectly. They thought it was an odd occurrence considering they were the only two utilizing the room. Corey looked at me, grinned and whispered as she moved her eyebrows up and down, “Curiouser and Curiouser”…
Today we had cooking therapy. I decided to stay in my sweatpants, socks, T-shirt and sweatshirt with an apron (a very attractive ensemble with an eclectic mix of colors that were not complimentary) Corey reassured me, “If anyone comes over, just tell them you were going for the comfort look”!
My mother always said, ‘Baker’s hate to Cook and Cooks hate to Bake’…she was right…I’m NOT a Baker. We attempted to make a candy tray. Who knew how fast sugar burned…Not me! Then we decided to try apple pies…a little of that and a little of this only works in stews. Baking is a little more precise. Corey did not stop laughing at me all morning (our 3rd apple pie was definitely better than the first!) PS – there is a reason the local grocery store sells packaged holiday cookies. It’s for all the people that can’t bake. The manufacturers should post my picture on the back of the package with a written warning label, “Do not try this at home”! (Everyone should know their limitations)
(And their strengths) Once we cleaned up the mess from baking, it was time to start dinner; Chicken Marsala with Penne pasta, mushrooms and string bean casserole.
Corey was in charge of the string beans. As I turned to check on her she was staring off into the family room. Her face and eyes fixated. I called to her, “Corey”. I’m always nervous when she stares off like this, it’s a typical look when she’s having a silent seizure. I approached her to watch her eyes. She wasn’t blinking but her eyes weren’t shivering side to side either. She blinked coming out of her trance and told me to look at the bright light. I was confused because the sun was still shining into the family room.
M – “Honey it is bright, the suns still out”? There was a long pause as she appeared to process my statement.
C – “Mom, how do you keep going”?
M – I sat beside her, “I don’t know?” “How do you keep going?”
C – “I know what I want to do and I keep trying until I do it”
Something happened in the moments prior to this question. Where did this question and answer come from?
M – “What helps you to keep trying”?
C – “I always did it in the past. You have to believe you can do it and never stop”
M – “What if someone is not like you? What if they don’t believe they can do it if they try”?
C – “You have to talk to God”. “Tell Him what you want”. “It will take a little bit of time but it will happen.”
M – “How do you know”?
C – Corey raised her eyes and said, “Jesus”. “He says ‘Keep Going’, He’s always with me”. “I know it will happen eventually; in my heart”. “It’s a Matter of Time”
M – “What if other people don’t believe or struggle with their faith”?
C – “I don’t care if other people know I believe in Jesus”. “They have to keep trying”. “He automatically hears you and will eventually come”. “He has no time limit”. “He can come whenever you’re ready”.
Staring at her face, I was speechless. She was given another message to share.
Corey broke our silence to ask “When can we give this speech”.
M – “You want to tell people about this”?
C – “I want everyone to know that Jesus is out there”. “He will be in your faith no matter what”.
I thanked Corey, “you teach me so much”.
“Mom, always believe and never stop”…
Once again I was reminded that for the last two years I’ve posted the opening salutation to this carepage as ‘Hi Everyone’. This message is for all of us, xoxo
2yrs; Day 746 – the big picture
Hi Everyone,
I am currently working with a family that is at the beginning of their path on this very long road. I remember being in the ICU after a few weeks thinking I couldn’t imagine coping with all of this for a few years.
Whenever any of us face a new obstacle, challenge or life altering event our internal clock instantly turns into a stop watch. A human response to seek the end point in order to strategize how we’ll manage until we can complete the task, get past the barriers and have closure. The big picture is often very overwhelming. The truth is the “process of coping” is often the most painful and difficult.
In your minds eye, picture a photograph of a snow squall. All you see is white yet you can feel the cold wind swirling within the print. Now picture this scene as a 10,000 piece puzzle. The solid color does not give the usual clues to grouping the pieces that will eventually be coupled. You’re only clues will come from the shapes themselves. You are forced to look at each piece individually.
Now think of your personal challenge…Today is one piece of the big picture; and it’s not a piece of the frame. How are you going to find which pieces fit within each other? How are you going to work on life’s puzzle everyday?
People often say that motivation doesn’t last. Well, neither does bathing – that’s why we recommend it daily ~ Zig Ziglar
One positive thought is the daily motivation that will aide in finding which piece to choose and where it needs to be placed.
I believe Corey’s progress would be much slower if it weren’t for the positive energy and encouragement we all give her every day. Staying motivated isn’t easy and it doesn’t last if we don’t seek it, share it and practice it daily. How would it have helped Corey if we only focused on “the worries”, “might have been’s” or “should have’s”?
Seeking the positive is how we can cope with the process that will ultimately help us appreciate the view of the big picture, xoxo
2yrs; Day 744 – we created multiple personalities
Hi Everyone,
A new personal best…
693 Meters in 20 minutes = 6 Home Runs and/or 7 ½ Football Fields
Corey is looking stronger and more fluid in her super suit. The Lokomat moves Corey’s legs for her but it also has the ability to track the movement the patient initiates during a session. Today Natalie allowed Corey’s right leg a moment of independence to test her muscle strength to perpetuate the robotic motion. We were thrilled to see Corey’s upper thigh naturally “step into” the rhythmic pace of the treadmill. It was fascinating to watch as well.
This was a very good ending to a difficult start to the day. Corey woke up at 2am and hadn’t fallen back to a sound sleep for the rest of the evening. As you can imagine her fatigue wasn’t helpful when it was time to get ready to go to Bryn Mawr. She was NOT happy.
Truthfully, the anxiety is based off her short term memory loss. The good news is our behavior plan is working. As Corey begins her tirade, I sit quietly and patiently, unaffected by the tantrum. When she pauses, I calmly ask her “are you finished”? She will either say yes, or continue flailing for a few more minutes (this is a huge improvement. It used to be 30-45 minutes)
We then talk about what’s bothering her. When Corey is tense, I have a habit of trying to break her mood with some comedic statement to distract her from the anxiety. It has now grown into a family joke between Corey, Caitlin and me.
C – “Why are we going to Bryn Mawr”?
M – Are you Forgetful Fran?
Corey smiles…I repeat the rehearsed statement for traveling 3 days a week for therapy
C – “I don’t want to go”, “I’m fine”, “I don’t need to go anywhere”
M – Uh oh, did Forgetful Fran bring Nervous Nelly with her?
Corey starts to giggle…I ask her why she’s nervous
C – “I want to stay home”, “I know home”, “Do these people know I don’t know them”?!
Her mood escalates becoming more violent.
M – Oh boy, Nelly can’t handle the nerves so she brought Crazy Corrine?!
Corey starts to laugh.
Caitlin watched our exchange and became quite concerned; “Mom, I think you’re creating a multiple personality disorder that didn’t exist before”…
Corey and I both laugh out loud.
As silly as this process is, it’s working. Corey can relate to her alter ego’s and is finding a way to describe her anxiety.
We left the house on time. We had been driving for about 35 minutes when she became irate in the car, asking where we were going, kicking her foot until she could kick off her sneaker and throw it towards me as I drove. Fortunately, I was in an area I could pull over and park. I calmed her down and asked her what was wrong. “I’m Nelly” she said as she frowned. (It was a huge break through…she initiated the description of her emotion). We took out the IPad, previewed our therapy videos and when she was calm, we continued to Bryn Mawr. We were only 15 minutes late and she participated in both her sessions!
This is one of a thousand moments in a day that is typical for a family trying to “live with” TBI. I have been working with the Brain Injury Association of PA answering calls for the resource line. The resource line provides direction to State and Government agencies as well as services that can support the recovery issues for TBI.
It has been enlightening to speak with other families. Although we are in different boats, we’re all traveling the same body of water…some are bobbing, others just keeping their heads above water and most calling because they need a life ring; their voices quiver terrified that it’s not tethered to a rescue ship.
Although we are at the 2 year mark, we certainly are NOT at the helm of our ship; on the contrary, there are days we are still looking for a paddle! What has been helpful is our experimentation and attitude. (Please don’t misunderstand, just because we right proactively doesn’t mean there haven’t been plenty of pity parties you all weren’t invited to!)
Experimentation and Attitude are critical chapters in our survival guide. We look at our world and each detail of our daily life as an opportunity to convert it to a form of therapy that may help Corey. Why not take the risk, what’s the worst that could happen…it won’t work? There in lies the attitude…how will we know if we don’t try? How do we teach Corey to communicate her anxiety? Is it silly names that reflect emotions? Why not? Well guess what? It worked today; tomorrow we might have to try something else.
We are in uncharted waters. Some days it’s beautiful and calm, other days we are blindsided by a Tsunami. Even though we have to pay attention to the details of the course set for us, the direction of the sails must be flexible. It’s our only hope not to capsize.
Draw your strength and inspiration from the purpose you’ve chosen to follow and from the value you intend to create. Focus on the destination, and you’ll work your way there no matter what ~ Ralph Marston
…and that’s what our girl does every day. Home Run or Touch Down…Corey just keeps swimming, swimming, swimming…xoxo
2yrs; Day 740 – Who are your coaches?
Corey,
Everyone has had days when they say “I’m tired”.
Everyone has had days they just want to quit, “when do we stop going”.
Everyone has had days they just didn’t want to get up out of bed or get dressed.
Some days are just harder than others.
~ It’s what we do to push through those days that make tomorrow easier.
When you’re tired, frustrated and exhausted from the thought that your “easy days” will never come, that’s when we look at the hard days that are already in the past. The work you do every day has brought you to this point. Just imagine what today’s push will do for tomorrow.
You and I have been working for a month with a broom stick. We sit across from each other holding the stick, our hands shoulder width apart. We pull towards you and push to me. We raise the stick above our heads and lower it to our lap. We “row” with the stick in large circles forward and back.
When we first started these exercises, your left arm would lock up and not bend at the elbow or lift above your waist. The stick would list to the left because your right arm was stronger doing the majority of the work. I guided the stick to assist your upper arms with each movement. Day after day we do the same exercises. Every day your arms have been getting stronger, the muscles are less tense and you’ve been increasing your range of motion. You are now lifting the stick without me…candidly you say, ”it’s easy”…only because you pushed through the hard days.
Seven months ago you wiggled your left toe. Nothing on your left side could move except that big toe. You pushed through stretches, lifts, surgery and casts to move the ankle, knee, thigh and hip. Today you walked on a treadmill with the help of a machine that simulated a leisurely stroll across 5 football fields…including the end zones! I know you love baseball more than football so to put that in perspective, you ran the bases for 4 consecutive home runs!
Whether you play sports or not, there are days you just don’t think you can find that last bit of energy or motivation to push forward. That’s when you need a coach. Their job is to develop your physical strength to work to the best of your ability. They also encourage, motivate and guide you to look within to find your inner strength when your body is exhausted.
Who are your coaches? Your family, your friends, your therapists, our community and each and every one of the people that are “out there” praying for you and cheering you on. All your coaches believe in you.
There was a famous football coach I know you’ve heard of, Vince Lombardi. He has many inspirational quotes but here are a few that I think we could use right now;
“The difference between a successful person and the others is not a lack of strength, not a lack of knowledge, but rather in the lack of will”.
~
“Perfection is not attainable, but if we chase perfection we can catch excellence”
Corey, you’ve got the will…hold on to it…it’s a matter of time …your tomorrow is coming! xoxo
2yrs; Day 738 – TBI Anxiety
Hi Everyone,
Corey’s stranger and separation anxiety remains at a heightened level at home but I am pleased to tell you that our conversational behavior plan with the therapy team at Bryn Mawr is beginning to work.
Her anxiety begins before she even gets dressed:
C – “Where are we going today”?
M – “Bryn Mawr”
C – “Why!” she yells.
M – “You were in a car accident 2 years ago. We go to Bryn Mawr 3 days a week for therapy to help you get better”. “Today is (M,T,TH), and it’s day (1, 2, 3)”.
C – “I don’t want to go”, “Where are my brother and my sister”
I have come to surmise that when Corey asks for JohnPaul and Caitlin it’s her way of telling me she’s nervous or afraid. The plan is designed to encourage Corey to talk about her insecurity and anxiety. She often does not remember the words to describe her feelings. For instance; tonight she told me she was sad. I asked why. She said, “I don’t know, it feels like something is not right”. After asking her some direct questions to describe her feeling, she told me that she feared Caitlin and I would leave her (we were bringing bags to the car for good will. She thought Caitlin was moving away and I was driving her).
The progress we’ve made using this approach is very encouraging. On therapy days we prep Corey by using her IPad on the car ride to Bryn Mawr showing her videos of her working with her therapists. She not only sees their faces and hears their voices, but she also sees herself working with them. I assure her it’s normal for her to forget and that’s okay. We literally rehearse the same conversation and details of each therapist/session for the full hours commute to prepare her to enter the building.
Normally when we are in her therapy sessions she refuses eye contact with anyone in the room except for me. Her eyes are fixated, locked (probably to make sure I don’t leave). If a therapist speaks to her, she answers appropriately but never breaks her eye contact with me.
Baby steps; Yesterday and today she began to turn her head and not only look at Kate, Natalie and Elaine, she engaged in conversation as she looked at them. This is a big improvement.
Today we saw Elaine for the first time since Corey could move her left fingers independently. She showed Elaine her “piano move” mimicking the simultaneous movement for the scales. Elaine was blown away! She had a great idea. She and Corey moved to the Patient Dining Room to play the electric piano. (another first…Corey allowed Elaine to take her with the assurance I would be following in a few minutes to meet them. She actually went with Elaine…and left me!)
We planned that I would be within earshot but not visible. Corey was having a great time playing the piano with both the left and right hand. After 15 minutes, she wanted to “show Mom”. Elaine came to the hallway (where I was waiting, listening and watching) and together we went in to play the piano. Corey looked at me and said, “look what I can play”. With Elaine’s help pointing to the keys and telling her when to strike, she played the HAPPY BIRTHDAY song with the left and right hand. I wish you could have seen her smile! After the applause and high five, she reminded me that her birthday is in 4 days, “I’m almost 20”.
Corey it’s going to be quite a celebration; In addition to your singing and playing the Birthday Song don’t forget…you can have cake and eat it too!
Today was an amazing gift, xoxo