Hi Everyone,

Corey had a full exhausting day. We saw Dr. Ruggerio first thing this morning. Unfortunately, we still have 2 weeks before he will remove the casts. Dr. Ruggerio wanted to make sure that Corey’s casts and rigorous PT sessions weren’t damaging her hips, pelvis or femur as she compensates for her new shoes. Her x-rays looked perfect. He was pleased with her ability to move both legs with the weight of her casts but most impressed by the artwork drawn on her casts!

We arrived back at Bryn Mawr and her PT, Jen, met us at the door to whisk her into the gym. No rest for the weary! Corey is doing quite well with all her sessions. Tomorrow we will be meeting with the Cognitive/Behavioral Therapist to hopefully learn new strategies for managing Corey’s volatile reactions.

I’m also hoping to gain insight into Corey’s ‘moments of clarity’. Yesterday she expressed her frustration using a profound statement. Today as we were waiting in the Dr.’s office, she repeatedly asked me to “take her shoe off”. I calmly explain that I can not take her casts off. Corey took a deep breath, (I thought she was going to argue with me about the removal of her casts) she looked at me and said; “Mom, I’m sorry that I ask the same thing over and over again”. I must tell you I was stunned! I looked at her wondering where that thought came from as I simultaneously was shocked at her sentence length and depth of meaning. This was a moment of clarity.

I asked her not to apologize. She has nothing to apologize for. I understand why she asks her repetitive questions. She looked at me, smiled and told me; “Mom, I love you to the moon and back”…then she asked me to take her shoes off…another 50 times!

I am fascinated by Corey’s sentence. Is this a glimpse of greater cognitive reasoning? Has the change in medication brought her back to baseline? Are her silent seizures forging new pathways stimulating new connections for higher levels of intellectual thought?

Corey when you forget I promise I will remind you that you can do anything. Life is going to be challenging and very difficult. It’s going to ask more of you than you will expect. It’s the perfect opportunity to show everyone you can see, you feel, you love and you understand. There is so much more that you can do. You are only beginning to watch it bloom within yourself. There is nothing you can’t do! xoxo

Hi Everyone,

It’s been a volatile few days on the Maple floor. Corey has reached her ceiling for patience. She has her good moments but then her evil twin (we’ve named her Corinne) arrives to say enough is enough. Thank goodness we are here because the staff is used to a patient being admitted with their twin visiting from time to time.

Bryn Mawr’s therapy and nursing staff are excellent when it comes to working with TBI patients that hit their level of agitation and/or disorientation. They also have several safety standards to protect the patients from hurting themselves. If a patient consistently attempts to pull their feeding tube and or physically hurt themselves, they have mitts that are placed and tied on their hands. If they consistently try to climb out of their beds, they place a mesh, locked tent over the frame of their bed. If they try to get out of their wheelchairs they have a seat harness that wraps around their waist to reinforce their seatbelts. Today, Corey almost added mitts to her wardrobe!

She does not like the feeling of being confined in her casts. Corey becomes fixated. She does not want to wait for her follow up visit with Dr. Ruggerio and is working very hard at trying to figure out how to remove the casts herself! This includes banging her leg to try to crack them open, pulling at the padding to remove the cotton lining as well as taking a bite of her dinner then trying to stab the cast with her fork. Since she can’t remove her cast she then tries to remove her feeding tube. Fortunately for her, she was not successful with any of the above attempts.

At one point she looked at me completely exasperated and stated; “MOM, I just can’t handle this anymore”! Normally this statement would pull at my heartstrings. After trying to redirect her for several hours (over the last 3 days) I couldn’t contain my reaction. I was elated, “Corey, did you just hear what you said”? With even more enthusiasm I added, “That’s a great sentence”! I was so excited and animated, it broke Corinne’s behavior and Corey began to laugh. For a few minutes I had her. She looked at me confused, she broke a smile then got very serious and said, “No Mom, I’m serious” “I want these shoes off”!…with that comment we laughed (most likely because we both know at some point one of us will end up in the bed tent if these casts don’t come off soon!)

When we can get off the crazy train; Corey is doing very well in the gym. She continues to progress with her walking a minimum of 40 feet per session. The therapists are also using small step blocks to work on Corey’s ability to lift her knee. She is beginning to lift the left leg as well. This movement is developing the hip/thigh muscles to assist with walking. Her left leg is now consistently “kicking” forward as she steps.

Dr. Long has been on vacation for two weeks. Dr. McDonald is covering his patients. Today, Dr. McDonald gave us some very good news about Corey’s left arm. After a thorough examination he told us that Corey has an excellent range of motion (ROM) but more importantly, she has isolated control of each part of her arm. Corey cannot control the movement of her arm independently, however, with a therapists help they can “feel” her response to movement from her shoulder down through her hand. This is big news! This indicates she may regain function in her left arm and hand with continued OT therapy.

Dr. McDonald suggested we try to get an appointment at Moss Rehab for a Poly EMG. Moss has a movement analysis lab. Electrodes will be placed along Corey’s arm. Based on the recording of movement, the test will show which muscles are in control and responding. The Doctor then will give a series of botox shots that will help isolate the weak muscles enabling the stronger muscles to develop the gross motor movement.

Corey in the midst of your frustration it’s very difficult to see past the moment but let me assure you, you are in fact making amazing progress! There is a saying, “be careful what you pray for”. Well kiddo, there are thousands of people praying for you to talk and walk. Your ability to express your frustration, anger and discomfort comes from answered prayers. You’re walking, taking steps, writing, reaching, including the failed attempts to remove the casts that bind you, is proof that prayers are being answered.

The words ‘casts that bind you’ are very significant. If it weren’t for your stubbornness and strong will you would have remained bound within yourself. You never allowed this from the beginning. You were determined to cast off any self-imposed or self-imagined limitations. Your tenacity is our gift. Selfishly we all are thrilled for your progress because it means you’re coming back to us!

Thank you for working hard every day, xoxo

Hi Everyone,

Today was a tough day. Corey’s evil twin checked into Bryn Mawr and she wasn’t happy! There were moments that Corey pushed through her frustration and I’m happy to say that she participated in each of her therapies but it took some fancy dancin’ and creative thinking.

There are motivational sayings that suggest a person’s troubles and challenges build their strength. The hard days seem to contradict that statement. The hard days actually feel as if they drain us of all our energy. Days like today I often think of athletes that work to the point of straining their muscles in order to grow. Corey pushes her self in the same way. Physically she had one of her most difficult days. Her pain medication could not cut the level and consistency of her discomfort. Her frustration was magnified by not accepting that her casts can not be removed yet.

I watch her in pain. I listen to her repetitive pleas. I respond with the same answer multiple times. There is no comfort in my words because they do not relieve her frustrations. I have guilt for feeling impatient. I try to put myself in her “shoes”; she deserves each outburst. They are long overdue. All my energy must be focused on trying to keep us both calm.

Corey I don’t have strong enough words to describe today. When we have a day like today it’s difficult to redirect your thoughts towards all the progress you’ve made up to this point. It’s exhausting to push day in and day out. It’s the tough days that we have to reach back and remind ourselves that today is really not as bad as some of your earlier days. Believe it or not, there were weeks that linked multiple bad days!

Now let’s think of the good days. Every day you move yourself forward. Today you’re closer to reaching your goal because you consistently pick yourself up, look at what you’ve achieved to take another step forward ~ literally.

Perhaps strength is built not on the trying days but on recalling the celebration of the successful days. Your accomplishments motivate you to want to achieve more. The tough days are just as ‘The Weaver’ wrote; ‘the black threads are as needful as the gold and silver’.

Rest and sleep well honey. When you wake we will see what colors the day will bring. I’m sure they will renew our strength! Happy dreams, xoxo

Hi Everyone,

It’s hard to believe that we’ve only been at Bryn Mawr for 10 days! In this short amount of time, Corey has made more progress.

Her speech therapist is very impressed with her eating! Corey’s casts have added 10lbs to her petite frame but she’s actually lost almost 3lbs since we’ve been here. It’s not because she’s not eating either. For breakfast she either dines on French toast or a cheese omelet with toast and jam. She always has fruit as a side. Lunch and Dinner is usually some sort of Chicken, Hamburger or Pasta with vegetables. She never misses dessert; ice cream, pudding or cake is sampled nightly. Corey eats small bite size pieces and usually the volume would equate to a ½ cup to 1 cup portion size. We place the proper portion on the fork or spoon and she feeds herself. It typically takes her about an hour to eat a meal.

Corey’s conversational skills are also improving. She is now speaking in full sentences. She continues to initiate questions appropriate to her surroundings and activities.

Rob, OT, worked with Corey this weekend. The last time Rob saw Corey she could only raise her right thumb. I remember how he would encourage her as he tried to get her to respond to his commands. When he saw her this weekend and had an opportunity to work with her, he was amazed. He made a point to come into our room later in the day just to see her again. He looked at me and said, “You never gave up”! Then he pointed his finger at Corey and said, “More importantly, YOU never gave up”! He gave Corey a big hug. As he left he shook his head in awe, quietly stating; “It’s a flippin’ miracle”.

We are back at Bryn Mawr for that very reason. Over the last 3-4 months Corey’s left side “woke up”. Her hand began to open, her left toes began to wiggle and her left leg began bend and move. When Jen and Gillian, our school and insurance PT’s, walked with Corey they began to see her initiate the movement needed to carry the left leg through to take a step. Her record was walking with their assistance for 30 feet. A week ago Monday, she walked 54 feet for the first time. Jen and Gillian tirelessly worked with Corey on a daily basis to prepare her for what we believe will be the next stage of her recovery.

Corey wears cast shoes over her casts. They have a rubber sole with canvas that wraps around the cast itself. She must wear these during her transfers and her walks. She has had a great deal of post surgical pain but we are noticing an improvement in her stamina and pain tolerance as the week progresses. Each day she is capable of a little more. I wish Jen and Gillian were with us today…Corey walked 88 feet with Natalie! The length of the gym here is 40 feet. Corey walked 38’ from the matte to the front door of the gym. She sat for a few minutes to rest and stretch out her legs then rolled back to start and walked not only to the door but out through the door to hall. We are officially on our way to the front door! I can’t wait to her casts to come off. She’ll feel so light she’ll want to run.

We had unexpected visitors tonight. Her girlfriends Ainne and Leah popped in on their way home from the Phillies game. Corey loved her visit with them. There was lots of laughter and story telling. When they left she was very sad; she wanted to go home with them.

Our time at Bryn Mawr is much different now than it was on our first tour. A year ago we didn’t want to leave. The unknown of what we were facing was not only overwhelming but terrifying. What if she didn’t progress? What if she didn’t progress fast enough? How were we going to replicate what we had here?

Corey we were so afraid. Sometimes you have no choice. The only thing you can do when you feel like you’re stepping off the end of the cliff is hope you don’t fall too fast and there is a soft landing.

Every day at home there was something that changed. Sometimes it may have only been your expression when you looked at us but it was a change. Other days it was a movement that increased its range of motion or was initiated for the first time. Rob was right but I would add to his sentence; you never gave up trying and we never gave up looking for the changes. That’s been our lifeline.

We are here for just a few weeks to get a job done…strength, stamina and increased growth with walking, talking and eating. I would say our first week was a success! Keep it up honey, we’ll be home before you know it! xoxo

Hi Everyone,

Corey had a good day. She is making some positive behavioral changes. In the evening I stay with Corey until she is truly asleep and then head to the dorm. She hasn’t had a night terror in two nights but her anxiety when she first wakes up (4-5am) is still present. The nurses call me when she wakes up and fortunately I’m just across the parking lot. By the time she begins to get upset I’m walking in the door to wish her a good morning.

We are trying to wean her away from me to go to the gym. The gym is very full; family members are not encouraged to attend the sessions with the patients due to the over crowding. Corey holds my arm/hand telling me not to leave her. We strategically place one of the aides at the door to greet her. She gets excited to meet new people. During introductions I try to slip out without being noticed to wait in the hall in case the therapists need to get me.

Corey’s separation anxiety throws me back to her pre-school days. When I would drop her off in the morning she would cry and cling to me for dear life! The teachers literally had to peel her off me. I would leave the front door and go directly into the side door to observe her transition through a one way mirror. I wouldn’t leave until I saw she had settled down and engaged in an activity. I’m not sure who cried more, Corey or me. Eventually she became acclimated and would wave goodbye before we hit the front door telling me it was time for me to go to work. I’m hoping for similar results here.

Corey continues to progress with her eating. She is not at all pleased with the bland diet ordered for her. I’m guessing the kitchen doesn’t realize that our little chef has a sophisticated palette! The calorie sheets showed she is only receiving ½ the daily count she requires. We will continue with eating breakfast, lunch and dinner but will supplement her daily intake with 1.5 cans of formula through the night to balance the nutrition she needs. She was receiving 3.5 at home in addition to her meals.

There are 4 levels of thickness a person can swallow. Max Thick, Honey Thick, Nectar Thick and Thin. Corey has graduated to Nectar. Thin is the goal. Jessica, Speech, is thrilled with Corey’s ability to not only speak but enunciate some of her words. One of her goals while we are here is to work on articulation and pronunciation as well.

The team at Bryn Mawr is not just for PT/OT and Speech. There is also a full staff of Doctors that follow Corey daily. Her most recent blood levels ran high for her liver enzymes. We are not worried yet but this is why it is imperative we watch her seizure meds. It’s been one week since we changed to the new generic medication. We need to keep a close eye on this one yet be careful not to tweak the cocktail too much because we don’t want to tip her off a seizure cycle.

I am also grateful to have Behavioral Therapists on staff. I will be meeting with them to discuss the challenges we have had at home. They can teach me some strategies as well as educate me on how to work with Brain Injury behaviors. This will be critical information to bring back to teach our home health nursing staff! There is not “what to expect when expecting” for TBI.

Corey has had more than a few moments of agitation coupled with disorientation tonight. She does not like the casts on her legs! She gets very upset, has leg spasms and is in pain; especially on the right side. We believe the right is worse because she has greater sensation on that side. She is very confused as to where she is, who I am and why we are here. The good news is today’s episodes were less than yesterdays…say a prayer tomorrow will be even better.

Coming back to Bryn Mawr on the TBI floor is definitely different than the first time we arrived. In some ways it’s much easier because we know what to expect. In many ways it’s more difficult because we are “living” with the many levels of TBI first hand. Spending time on this floor certainly puts life and it’s blessings into perspective regardless of how those blessings manifest themselves. Sometimes the greatest blessings go unappreciated until you see what others are given. It’s up to us to recognize the beauty of the gift we received. See it, appreciate it and spend each day living the life you have.

Tonight we were told sad news and would like to ask for a prayer. Not for us but for one of the families we knew during our stay. They arrived shortly before us and were discharged this time last year. When they moved home we lost touch except when we would happen to cross paths for follow up visits. He developed complications after one of his surgical procedures. Rest in Peace Robbie, xoxo