Hi Everyone,

Our day was pretty good. Corey had her moments but she had a good session with Diane (ST), Jen (PT) and Alice (OT).

Diane worked on analogies and was surprised by Corey’s accuracy in answering questions she could not answer before. Jen and Corey walked 20 feet; up the center hall, left into the kitchen towards the dinette table. Corey is consistently lifting her left knee to kick through each step. She had added motivation; her first Chef Salad with Italian Dressing. Corey did a great job with the lettuce, ham, turkey, cheese, tomato and hard boiled egg. She takes small bites but she ate ½ a cup full.

After a late lunch Alice arrived. She and Corey are working with manipulative toys that require two hands. For example, Corey is using a Bumble Ball. She grasps the key ring with her left hand, extends the toy by pulling the string, she releases her left hand and it bounces back. She is also grasping large peg blocks. She holds them when they are connected then has to pull them apart. In case you’re missing the significance of these exercises…Corey is using her LEFT HAND to grasp, pull and release each of these tools!
Alice is also starting to feel her left shoulder muscles begin to engage as manipulates Corey’s left arm exercises. THE LEFT SIDE IS COMING BACK!!

Corey, there are days that we both don’t know how we will find the energy to keep moving forward. If we think of “how long” it will take to regain all the muscles that will have you moving naturally, it will be too overwhelming and we’ll be tired before we start our first exercise of the day! The good news is we have the energy to get started…the rest will come as we need it. There are many trite sayings about achieving long term success but my favorite is “How do you eat an elephant”? ~ “One bite at a time”.

Look at how many bites you took today! You began with pureed foods, moved to soft solids and now you’re eating the meals you are preparing. Think of the steps you took today. It wasn’t that long ago you were just wiggling your toes and now you’re walking down the hall and into the kitchen.

We can not be discouraged at how long the road ahead of us is. Instead we must be thankful and excited about each step you take. Our job is to keep moving forward one step at a time; each step taking us closer to our goal of full recovery. It’s within your reach honey…just take another look at your left hand! xoxo

Hi Everyone,

The Hand Bell Concert was beautiful! We would like to thank Avondale Presbyterian for including Corey as one of the beneficiaries of this event. The proceeds will help us purchase supplies for Corey’s weekly Cooking therapy. We love to donate her dinners to the local churches for their Meals on Wheels program. It is very important to us to give back to the community that has given so much to our family.

Today was one of those days I wanted to pick up the phone and call my mother. Unfortunately heaven is a long distance call. It’s Monday so I thought the best way to bring Mom back was to cook one of her favorite recipes. Today Corey made Dedema’s Pot Roast and mashed potatoes served with a vegetable medley. The aroma in the house was almost as good as the memory of her perfume.

We have a busy week with very little nursing coverage. We are interviewing new nurses with a 2nd agency as well as orienting new nurses with our 1st agency but the process is slow. We have two big follow up appointments this week. We will see the seizure specialist and Dr. Long at Bryn Mawr. We are anxious to discuss the changes we are seeing with Corey’s short term memory. In addition, we have to discuss possibilities for the next phase of her rehabilitation.

In addition to Corey’s appointments and therapies, I will be speaking in Harrisburg on Wednesday and Friday of this week. I will not only be advocating for Corey but for all families appealing to the Governor, Senate and the House to increase Medicaid funding for waivers that would give home, community and rehabilitation services. We are also asking for legislation to mandate that Insurance companies disclose their coverage limitations/benefits for acute hospitalization, sub-acute and skilled nursing facility length of stay as well as in-patient and out-patient rehabilitation services to their members.

If we can teach you all one lesson from our experience it would be to please look at your insurance policies. Think of the worst case scenarios of any injury or illness. Please think through the steps you will have to take to care for your loved ones. In addition, for those of you who are parents of young adults; please document their decision to appoint a guardian for medical decisions (especially if they are 18 or older) as well as their preferences for medical care. Have this documented and notarized. You may never need it, but God forbid you do it will help you advocate on their behalf.

Corey continues to be disoriented. I have been networking with TBI families and professionals within the Brain Injury Association. What we are experiencing is extremely difficult but not unusual. It was expected by some. Corey is having difficulty sleeping (day/night). She will doze off but awaken with extreme anxiety and/or night terrors. She does not recognize “her room” or have an understanding that she is “home”. It’s not the home she remembers. She doesn’t always recognize me either. Tonight she said my hair was too long to be her mom…she remembers my shorter hair style. I tried showing her photographs of our family but there was no connection. Eventually she allowed me to hug her. She smelled my perfume and suddenly “recognized” me.

Some families and board members have explained now that Corey can articulate her thoughts, she may be expressing the anxiety she’s felt all along but could not communicate prior to this point. The disorientation could be a phase and/or her short term memory could reflect permanent damage from her injury. We must wait it out and be patient. Comfort her, reassure her and try to work through it the best we can.

WE NEED YOU…I would like to ask you all for a favor. This phase is emotionally difficult for us. If there is a day we cannot post an update could you please write a message to Corey anyway. If you know her personally, write one of your favorite “Corey Stories”. If you’ve come to know her via this page, send an encouraging note. You all are an integral part of her recovery. Your prayers, encouragement and support keeps her focused, motivated and spirits uplifted. We are choosing to approach this new challenge as another phase we will get through; just like the burning mouth syndrome. She has come so far in 18 months…we have to keep a positive attitude and continue the momentum, looking forward to the endless possibilities not yet presented!

Let’s rally TEAM COREY, xoxo

Good Morning Everyone,

For those of you who are parents, you will definitely understand the following scenario. Remember when you had your first child? You might have had some babysitting experience but never a 24/7 shift. The baby cries and you check the standard 3 causes; are they hungry, wet or have gas? That list doesn’t match the symptoms and so the guessing game begins as you try juggling, singing, pacing and any other trick you can think of. Eventually your little one falls asleep. Night after night this routine continues and just as you figure out what works for the two of you…it changes. Your baby settles into a routine and it’s time for you to have a night out. The babysitter arrives; you’re excited for the respite but secretly worried hoping all goes well. You call to check in only to hear the baby screaming in the background. Your child has hit the separation anxiety stage you’ve read about. Welcome to our new stage…

We have one regular night nurse and a few that are new to our case. Our regular nurse began reporting last week that Corey was not sleeping through the night. She has been waking up calling out for me. She tries to redirect Corey and most nights she’s successful, however, since last week Corey has been inconsolable. The nurses cannot calm her down when she gets to this point. When I come down to help settle her, she holds onto me begging me not to leave her. The last week has gotten much worse. Last night it seemed that she may have been having night terrors. The most unsettling for me was when she looked at me and didn’t recognize me. She was calling out for “her mom”. I asked her to look at me again, I was her mom. She said I don’t look like her mom. I told Corey that I realize bed-head isn’t flattering on anyone but if she looks really close I assure her I am in fact her mom. I caught her off guard and made her laugh. She then recognized me and settled down.

This morning’s realization ~ the more I learn the less I know! TBI is very unique. It’s not like a stroke, dementia or Alzheimer’s yet there are components of each within TBI. The cognitive and behavioral aspects of this injury are truly challenging and complex.

We are going to Dr. Brown’s today to follow up on Corey’s headaches as well as discuss how her recovery is evolving. We will be looking into some additional resources to best help us through this next phase.

Corey’s separation anxiety is actually a positive sign. She is continuing to move forward. She is becoming more aware of her surroundings and the people in her life. She is becoming more verbal, expressing herself (sometimes quite loudly) using longer phrases and sentences. She is initiating questions. She’s begun to tell me, “I’m thinking about…” and share a memory that suddenly presented itself. Diane is amazed at Corey’s accelerated speech and whole language development.

I’m happy to share another sign of progress. Yesterday during her PT session, she literally took another step forward. I was fortunate to capture it on video! Corey has begun to instinctually lift and step with her left foot. Visual proof that therapy is as critical to her full recovery as is her daily medications. To watch your child’s first steps is an amazing experience but to have an opportunity to relive them after witnessing her fight to overcome insurmountable challenges cannot be expressed in words!

Corey initially every challenge you face seems bigger and more formidable than it is before you begin to tackle it. We discover new aspects of this recovery every day. Your willingness, motivation and determination in working through it will help you manage it. Obstacles seem insurmountable because you don’t know all there is to know about them. Working hard, getting creative, staying positive and never relenting are some of the tools you continue to use to chip away at how imposing it appears to be. Watch yourself and celebrate your success. You continue to face the day, work on it, around it, over it, under it and move right on through it!

You’re incredible Corey…I’m so proud of you, xoxo

Corey Beattie steps forward ~ http://www.youtube.com/watch?v=yZT_SbbzfLU

Hi Everyone,

We continue to face many challenges but received a few amazing gifts today that reminds us perspective is everything!

Today was actually a very difficult day as we continue to fight for therapy coverage. Now we are not only trying to find another agency, but insurance denied coverage with the agency dropping us and we were given our discharge notice for tomorrow! Needless to say, I spent the day on the phone and we filled an appeal. Services cannot be discontinued until the appeals are exhausted. We are back to where we were a year ago.

Despite the gauntlet dropping, Corey had her usual therapies. During her session with Gillian, she walked using a walker about 20 feet. There was another first; Corey not only released her left knee, she raised her knee to lift her foot, kicked through the step to place her left heel on the floor taking an official step. Not once or twice, but well over a dozen times. Today’s session was an official walking session! This was gift #1.

Gift #2 was delivered tonight when we received the edited copy of a documentary we have been working on with Jon Ristano. Jon is not only Caitlin’s best friend, but a film major at Temple University. We have been working on this film to incorporate it in our presentation for an upcoming hearing with the Senate and Congress as well as our presentation in June at the BIA-PA annual conference.

Watching Jon’s movie was wonderful. It brought back many memories which were hard to share but was worth remembering. This movie not only shows us our beginning but how far we’ve come. Corey’s step forward today is the perfect symbol of where we are headed. I was reminded that every step is forward…there’s no going back!

Jon, Thank you for sharing your talent and representing Corey’s Story so beautifully!

WARNING – This is rated 10T…you’ll need at least 10 tissues to get through this one folks, xoxo

Hi Everyone,

We had no nurse today and all therapies were scheduled for the afternoon. Corey and I had a nice quiet morning. I love the mornings as she is usually bright and very chatty. Corey usually initiates the conversations depending on what she’s thinking or if she has random memories she asks me about.

She was quiet at one point, staring off briefly when she lifted her hand using her “new” sign. Wondering if our visitor was back I asked what she was doing, was she listening to someone or something? She turned to me and quietly stated, “Jesus was gentle when he kissed my cheek”. I was filled with such comfort as I looked at her face. She had a beautiful content expression recalling that memory. I asked her ‘why do you think God is coming to see you’? She answered; “because I asked him to”. ‘When did you ask’? She told me “When I’m hurting”; she gestured to her heart and rubbed her left arm. I didn’t press her to qualify her statement.

There was a quiet pause in our conversation. ‘Corey, has God asked you to do anything’? Without hesitation she said, “Tell the people come see me, I am your God, Love Me and Love others, I am a great God, I love you”. Our conversation concluded as she smiled and drifted back to sleep. There has been no further discussion about her experience for the rest of the day.

Like most of you I have not been able to completely comprehend this. A story like this happens to other people or children in Europe hundreds of years ago. I have been replaying it in my mind all day. Hundreds of questions have surfaced. How can we ask them? Would we get the answers we were looking for? Do we want to hear what the answers truly mean?

Prior to Corey’s accident I was spiritual and thought I had a strong faith. I was not a member of any religious community. The accident leveled me spiritually. I remember being in the ICU and a priest wanted to pray with Corey. I allowed him to see her but not while I was there. When friends comforted me and spoke of prayer, internally I was enraged. I wanted no parts of it. I politely asked that they pray for her privately. Over the last 18 months I’ve been filled with doubt, anger, resentment, fear, mourning and uncertainty (the list could go on).

At the close of every day I knew that I could not face the next day without something to hold onto. So I forced myself to find one positive “thing” every day. Then I searched for a word, sentence or phrase that would reflect that “one positive” I was holding on to. My rationale was even though I thought I lost my faith, I would practice this ritual until I felt my faith come back. As the saying goes, “Time heals all wounds”. For me this refers to my emotions and spirituality.

Corey I want to thank you for sharing this with us. I know that God came to be with you but there was a message in your conversation that I needed to hear for myself. Once again you have reminded me to open my heart to the possibilities of something greater than myself. It’s so easy to get caught up in the details and negativity of our daily challenges that I lose the moment. My mind builds a brick wall to protect my emotions so I can continue to push myself beyond normal limits to get what we need accomplished. Unfortunately, the bricks mortar has begun to weaken. I was beginning to feel a heightened sense of abandonment and defeat. Watching and listening to you over the last 48 hours has strengthened me. You have helped me become aware of my own healing.
This is going on the gratitude list! Happy dreams, xoxo