The purpose of this blog is to show how faith, my professional training and a healthy sense of humor taught me and continues to teach me that Jesus Christ is always in control. I am a fellow learner as this journey for my child unfolds. My wish is that Ben's legacy gives others hope where there seems to be none. It is also my desire that the information I have assimilated with my medical mind and filtered through a mother's heart gives practical ways to deal with this ever-changing chronic disease. Finally, for the many friends and family members who continue to follow Ben's life change after the injury, the story continues.

Tuesday, December 3, 2013

Just for fun! Ben doing a parody of a TV cooking show. Love his sense of humor.

Sunday, November 17, 2013

Ben continues to live and learn at the neurorecovery center. Jim visited him this weekend. He and Ben went to the movies and enjoyed dinner at a local restaurant. Chicken fried steak has become Ben's favorite meal. Today staff members from the neurorecovery center took Ben to church. Our cousin, Elizabeth, then took Ben to lunch and to the park. Ben sent pictures from his iPad taken at the park. he is "clowning" around. It is a beautiful day. There is pure joy written all over his face.

Wednesday, October 23, 2013

I visited Ben this last weekend. He is remembering more and more. With the new freedom allowed with his day passes from the recovery center, Ben's world continues to expand. He LOVES being around people. Attending church, going to restaurants and driving through the city are all new adventures. After a church service Ben said that he was filled with "joy in this place'. I often think of all the prayer requests over the last year asking for the joy that is manifesting before my eyes. The church that has take an interest in Ben took video footage of him last weekend as part of the pastor's sermon series on faith. What an honor! My prayer has always been that  this story would be for good, to bring others to hope and faith in God.

Sunday, September 29, 2013

The evolution and change in Ben's rate of healing continues to amaze and astound us. I arrived at Ben's on Saturday for a visit. I was late. It had been a difficult day, with unexpected patient care issues that morning in my medical practice. The drive to the neurorecovery center had taken longer than usual in the afternoon rain and I was tired. I arrived at around 6pm and was greeted with a smiling Ben and the news that he had been granted day passes for Saturday and Sunday.  This news was unexpected and such a gift! My fatigue evaporated.  As the weekend unfolded, it was clear that God had much to show me. It was SO good! We got in the car, almost giddy with excitement. This was the first time Ben was on his own with just family and no restrictions.  I was about to see how God is equipping Ben to show others what a miracle is like.

Wednesday, September 4, 2013

I visited Ben a few days ago at the ranch where he lives. The most recent development is his increased thirst to establish relationship with friends and family. He is remembering phone numbers and calling people to talk often.  He is texting messages to them. A sweet friend and neighbor called me on Saturday night excited because Ben called their house that evening. It was totally unexpected. How did Ben remembered her number? This friend's son had been an important companion early in Ben's life. Both the friend and her son had visited Ben often during the days when Ben was in critical condition in the neurosurgical intensive care unit. She was crying. To her, the phone call was evidence of the miracles God is capable of performing.

Wednesday, August 14, 2013

Early in the course of Ben's injury I would refer to positive signs of improvement as a "flicker" of hope.  In spite of all the serious complications and signs of disability, I would see, briefly, that "my Ben" was still in that healing body. As we move into the fifteenth month after his injury, the "flickers' aren't occasional, they are blinding flashes. Ben is remembering more and more. His personality is returning. His sense of humor is great. Ben calls us CONSTANTLY on the phone. If I don't answer quickly enough, he calls  Jim or the house phone. Importantly, he remembers all of our numbers. Ben's other memories are not perfect, but what encourages me is the constant evolving mental status. Something is happening in that brain. It has to be good.

Saturday, July 27, 2013

A conference with all of Ben's therapists was held on Tuesday of last week. I listened to each story unfold with amazement. Ben has achieved so many of the goals listed in his therapy plan that a completely new plan has been laid out with new goals. His balance and walking gait require only infrequent reminders to look for obstacles ahead. Ben is now able to orient himself to date and time using cues in the environment without help. He is answering most questions correctly on listening comprehension exercises.

Sunday, July 14, 2013

It was a beautiful day at the Texas ranch where Ben lives and receives the necessary therapy for his traumatic brain injury. The day was cool and pleasant after the summer rain and Ben and I took a walk to pet the horses in an adjacent field. Even though Ben walks unaided with excellent balance, an attendant is close by at all times for assistance and therapeutic companionship. After the walk, Ben and I played a game of "Sonic the Hedgehog, Unhinged" on the X Box for the first time. He loved it and amazingly remembered the control maneuvers with little instruction. We played about an hour. It may seem like a small thing, but to learn, retain, perform the motor skills, and remain attentive for this length of time is a huge victory.Afterward Ben worked on applying a wood stain to a birdhouse that I purchased for him. Cognitively, he is struggling. Ben has to be reminded that he is not at camp or school and that the therapeutic staff members are not counselors. Often what he says is nonsense. Often what he says is true. Ben is getting better and better. It was a good day.

Saturday, June 29, 2013

Jim and I continue to be impressed by the diligent and specific care Ben is receiving at the current neurorecovery center. One year ago Ben was just starting to specifically response to commands, could only stand with help and was on tube feedings. Last Thursday Ben went to the grocery store with others from the treatment center. He had to locate 4 items on a list which were important for the evening meal. HE DID IT! Ben is walking with very little help for balance. The wheelchair is gathering dust. The therapy team has Ben folding laundry, sweeping floors, and taking out trash. He loves sanding and painting signs for the garden that the facility is installing. Ben also helps care for the garden plants.

Tuesday, June 18, 2013

Jeffrey and I visited Ben this weekend. As usual, he was anxious for us to get to the house where he is living. He tells me that he wants me there to talk about plans. These plans always involve activities with the family. Even when Ben needs a bathroom break he says, "Please don't move, mom. I still have you close to my heart." There are some subtle differences in his cognition since my visit two weeks ago. Ben is much more aware of his appearance. He is asking for collared shirts and khaki pants. Ben also is handling many personal care issues, like shaving, with very little help.  He continues to have attention problems which affect his ability at times to participate in therapy. He often confuses past, present, and future events into a statement about what is happening currently.

Monday, June 10, 2013

As I listened to Jim's report from his recent visit with Ben, I was hoping to hear more stories of remarkable progress. Typically, however, brains do not heal quickly after a serious TBI.  I have to keep reminding myself of this fact. "Slow" is a word that I do not care for. The progress we are seeing in Ben's condition is common. Some days he is changing rapidly with improvements in thought processing, physical recovery, memory and attention. Other days are frustrating when we see the same struggles over and over again.   TBI is a chronic disease. Even milder injuries to the brain often take months, even years to heal. Many never heal completely. Even individuals who are recovering from a TBI  look fine, but are  often are overwhelmed and can be confused with even simple tasks.

Sunday, June 2, 2013

I returned this evening from a weekend with Ben.  He is in an amazing, restful, beautiful place. I know this is exactly where he needs to be. The progress he is making is slow and steady and SIGNIFICANT!  Conferences on Wednesday with Ben's care team lasted about an hour. Each therapist gave an accurate assessment of Ben's current status, plus concrete goals and a plan to achieve those goals. Physical therapy described Ben's walking gait as "unsteady, wide based, with not enough heel contact". She followed with specific strategies to improve his gait and mentioned that Ben's tolerance of the exercise bike has increased from 30 seconds to 10 minutes.

Saturday, May 25, 2013

Jim made the drive to see Ben early this morning. The reports this week have been encouraging. Apparently Ben is only rarely using his wheelchair to move about the new recovery center. He is walking everywhere.....all day. That really makes me smile! I hate that wheelchair. With all the physical exertion, Ben is going to bed very early each night and sleeping well. The therapists and staff are working on behaviors and personal care as well as many other cognitive problems. What I love is how

Wednesday, May 22, 2013

I arrived at the hospital to pick up Ben very early Monday morning. It was a new beginning, a new day. The van from the new neurorecovery center was waiting. Ben and I climbed into the back seat behind the driver and attendant and began the long drive ahead of us. It was a miracle that Ben had even been approved by insurance for the treatment center. Ben's new neuropsychologist said the exact words the Humana doctor needed to hear in order to give Ben this chance.

Thursday, May 16, 2013

Yesterday, at 5:05pm we received notice that our insurance company has approved Ben's treatment at a neurorecovery center specific for his needs. This is a miracle that only God could have orchestrated.

Wednesday, May 15, 2013

Tomorrow is the anniversary of Ben's injury. One year ago I couldn't even imagine dealing with the list of medical, physical and psychological problems common in young men who survive a life threatening traumatic brain injury. Believe it or not, I would have been excited if someone could have told me the problems  that Ben would be dealing with today. In May of last year Jim and I knew that the chance of Ben surviving the accident was small. The chance of a functional outcome was slim. Today, the list of problems that Ben faces each day can be extremely frustrating. It is long, with many victories and setbacks each and every day.  Ben still remembers little about the accident. He has not cleared "post traumatic amnesia" which is not a great prognostic sign.

Sunday, May 12, 2013

Hello everyone. Todays update on Benjamin is full of victories and challenges. Benjamin moved from Touchstone Neurorecovery Center on 4/23/2013. The decision to move him at that time had to do with insurance coverage. Jim and I tried to admit Ben to a different facility for care and recovery. This facility didn't work out. After 2 days, we picked Ben up with few options. For the last 2 weeks, we have hit road block after road block looking for the right choice for rehabilitative care. I know that the answer is coming soon. God has been directing this from the beginning. For some reason Ben needed to be out of Touchstone. something better is on the horizon.

Saturday, April 27, 2013

Hello friends. Much has happened since my last update. Ben's progress in recovery has improved in several ways, but Jim and I have been faced with many challenges in obtaining good care for him over the last few weeks. First , the medication plan initiated at the Touchstone neurorecovery center seems to be working. Ben is less sedated, more verbal, and happier. His gait is much steadier, needing little support when out of the wheelchair. Jim and i were able to take him on his first car trip outing; lunch at Sonic and a short shopping trip to Academy. Ben's comments,"It's fun. It's radiant, you know? I get to go to Sonic and order from the regular menu. I feel anticipated about that!". He followed up with, "Do we need gas yet? I'll put gas in the tank because my dad deserves it."

Tuesday, April 9, 2013

Hello everyone. Thanks for continuing to follow Ben's updates. In the past few weeks Ben has had several medication adjustments. We are starting to see improved behaviors. We are starting to see Ben's joy return. It isn't as often as I would like, but better. I have had to step back recently to count the blessings that we have TODAY instead of continually striving for tomorrow.

Monday, March 25, 2013

Benjamin is still residing at the neurorecovery center. Horticulture has been added to Ben's schedule. It is much more interesting than the classroom based activities which constitute most of Ben's day. Ben receives group therapy in memory, social skills, relaxation, and leisure in the classroom, but the time spent indoors has decreased. This is good and hopefully will tap into Ben's interests. Faye, the master gardener, who has been running the program for over 9 years is amazing. I have had much encouragement from her thoughts and observations of Ben and other's she has worked with in her many years of using plants to reach patients with traumatic brain injury. Her greenhouse is beautiful. Christian music blaring, helping the plants and the patients "bloom".
Benjamin has been dealing with the same issues as mentioned in previous updates. He has good days and bad. Impulsive behaviors and improper verbiage is still occurring, although less often. Ben still has significant problems with memory, attention, and language processing. I still hear amazing "flickers" from time to Ben is THERE. Yesterday, after misbehaving, Ben sighed, looked at me and said,''I really don't want to be a Dufus". He hates to upset me and says thoughtful things often to the staff. Medications have not helped much. When the behavior improves, the memory worsens and sedation increases. I told the doctors to stop a medicine yesterday for another adverse reaction. Please pray for Ben's doctor to have wisdom with the next plan.
The battle to enrich Ben's world continues. When Ben was denied speech therapy and occupational therapy (He still receives physical therapy) because the professionals deemed it of little value for him, it was tough. Jim and I met the issue directly, but i still was frustrated, even angry. My devotional one day stated, "If our goals are blocked, we become angry. If we perceive our goals as impossible, we become depressed. The heart of depression is hopelessness. Can any God-given goal be blocked?" The answer is NO! God's hand has been in Ben's life from the beginning. My solutions may not be God's solutions so I have ceased that struggle. Instead, with friends, we have planted a garden, started bringing Ben's dog to the home, personalized flashcards for him working on memory, started using iPad programs for language retrieval and added as many activities as we can think of. The professional who makes therapy decisions has chosen 3 of the suggested areas to concentrate on in Ben's official therapy.This is progress. I also have full confidence that Ben's medications will be adjusted properly by his doctor. Please pray for Ben in this battle for his mind"s healing. Remembering how far we have come.......Ben could have had a far worse outcome. He talks. He smiles. He loves his family. He remembers much. Ben is also not finished improving. Look at the amazing photographs.

Thursday, March 7, 2013

Hello everyone. Lots of new things have happened in Ben's life since my last update. As we settle into this new phase of recovery, the ups and downs experienced from week to week have become the norm. Because Ben is 9 months into his recovery period and he still has not recovered from post injury amnesia, his prognosis for long term functional recovery is guarded. Ben has good days and bad. He will be social and charming, eager to please and learn, only to be followed by extreme oppositional behavior accompanied by inappropriate language when faced with the smallest frustration. He simply can't remember what he has learned and the distractibility he exhibits requires constant redirection. Because of this, his doctor has reduced traditional therapies and is focusing on the classroom based cognitive interventions and home based activities. Benjamin still receives traditional physical therapy and walks often with the staff in-between sessions.
Ben's medications continue to be a struggle. I have had many "doctor mom" moments of extreme frustration with the medications that he has been on. Waiting on the effectiveness of psychiatric medications takes a long time, however there SHOULD be evidence along the way that the choice is a correct one. Finally, a blessing in disguise occurred last Saturday when Ben had to be given an injectable medication for sustained inappropriate verbal behavior. This medication is an old one, used for mood. It should have "zonked' him. To my surprise when I went into his room, Ben was happy, easily redirected, conversant and compliant. I emailed his doctor and said "LETS TRY THIS ONE". I am not sure that you can shout in an email, but I sure tried. Ben started the new medication yesterday and the old one (that I hate) is going away. Please pray for Ben's mood and behavior. His "joy" is still there, but I see less of it. Behavior is the major obstacle to Ben rejoining us in activities outside the neurorecovery center. As traditional therapies are deemed useless for Ben, I believe that moving into new areas of stimulation for him is key to improvement. There are other programs available to Benjamin if this "mountain" can be moved.
I spent all morning with Ben yesterday. We walked the beautiful campus, including the on campus greenhouse in our tour. Ben was interested in the plants and spent time looking at all the varieties cared for there. I still see "flickers" of self awareness. When I firmly told him to alter an observed behavior, he looked at me as said, "Mom, I want to straighten up. I don't want to be like this". It was a fleeting moment. I needed to see that Ben knows what he needs to do even though the damage in the reasoning part of his brain keeps it from happening consistently.
I have reread notes written at the beginning of this faith journey. Nehemiah 9:19 says,"You in Your great mercy forsook them not in the wilderness: the pillar of cloud departed not from them by day to lead them in the way, nor the pillar of fire by night to light the way they should go". i have had to move into a new way of thinking with Ben's recovery. If memory and behavior issues are moving him toward more "home based" interventions, perhaps I should augment this instead of fighting it. Yesterday a friend gave me a large planter, sturdy enough to stand next to. Ben and I are going to grow things at his house. I am praying for new ideas. I am praying that the medications will improve his mood. I am praying for attention and memory.
I have added pictures from Ben's 24th birthday party. It was a special time with family and friends. He loved every minute of it. Ben is still a miracle. God is working. It will be good.

Sunday, February 17, 2013

Benjamin remains in treatment at the neurorecovery center. He continues in cognitive therapy for brain function and memory, physical therapy, occupational therapy, and speech therapy. The difficulties involve balancing Ben's medications to optimize his brain function. With medications that improve his initiation and attention, we often dealt with unacceptable behaviors. With medications for mood, he is more sedated and participation isn't optimal. Ben had a rough day Friday. I spent 5 hours with him on Saturday. Although he started down the path of unacceptable speech a few times, the episodes were short and aborted quickly. It is encouraging to me in the midst of the "mess". I watched his face. It is easy to see what will be about to trigger an unacceptable response. Timing of a question of how he wants something done or identifying that he is about to be asked to do something he doesn't like minimized the bad behavior. Distraction is also helpful. Ben's brain is moving.....changing, learning. It isn't fast, but change means HOPE.
Ben's walking is improving. He is becoming more independent in his personal care. He loves visitors. He loves his family. Ben has frequent moments of clarity. I was speaking with Ben about how he should ask God to help him stop the behaviors that do not reflect HIM to the world. Ben is trying. He said, " I heard it from you and it stuck with my heart". He looked at a staff member and remarked, "My mom isn't happy and that makes me sad." Ben knows what he needs to do. He is battling himself. Please pray for this battle to be won. Ben's doctor needs wisdom. Ben needs a renewed mind. Thanks everyone.

Tuesday, February 5, 2013

Dear Friends, Ben is still receiving treatment at the neurorecovery center. He is showing slow, steady progress, although there are remaining significant impairments. Ben is walking more and more. I am seeing "flickers' of a returning sense of humor. His memory for events, both recent and in the past, is unpredictable. The blessing is the periods of clarity that occur here and there. Ben was looking at the scar from his tracheostomy, (the opening in his neck used for breathing in the intensive care unit), in the mirror last evening. I saw a bit of vanity as he gazed at the healed incision. He said, "look at this...It's a burn." I replied, "No, Ben, it was from the breathing tube". Ben quickly told me he didn't want to think about it. It was a flicker of recognition/memory. Dr. Cassidy tells me that remembering would be a good sign. Dr. Cassidy is still adjusting medications.The challenge is keeping his temper even, reducing impulsivity, increasing attention span without sedation or overactivity.
Ben is more alert and able to participate in games, puzzles, and activities. His remarks can be inappropriate at times because of the damage in the right frontal lobe area of his brain. It is important for me to remember that even though the positive changes that I see are small and SLOW, (slow is tough for me) , the changes show that Ben's brain is still changing.....healing. Neuroplasticity is the ability of undamaged parts of the brain to take over for the damaged areas. Research shows that most of the recovery from traumatic brain is within the first 6 months. What I am seeing doesn't reflect this statistic. Ben's injury was 8 months ago. His youth will help beat the odds. Prayer will help beat the odds. God isn't finished with him yet.
I visited the neurorecovery center Monday evening with Alex, a young friend who played youth hockey with Ben. Ben was happy to see us. The love he has for family lights up his face at every visit. He definitely wants something be a part of the outside world again. I believe this will happen. We walked around the house. We walked outside. He stood alone for a long time. When I asked him to tell me one thing he prayed for today, Ben said,"mood stabilization". It blew me away. He knows. Please keep Ben in your prayers.

Saturday, January 19, 2013

Hello everyone. I know it has been several weeks since the last update. Brain injury recovery in this post acute stage, tends to be slow and steady. Benjamin's progress has had it's ups and downs in the last few weeks. He is more alert and active. We have noticed increasing participation in the activities we bring to the neurorecovery center. Last week I brought a game similar to Bingo to play with Ben. (Zingo) Ben and another resident (who has no intelligible speech) played several games. It was loads of fun. We have also found several iPad programs that work on associations, reading and reasoning. Ben is performing much better than two weeks ago . He is often quick with his responses and very engaged. Ben is also walking much more with very little help. His doctor continues to make adjustments to his medication. As medications are decreased to improve alertness and memory, we often see short burst of inappropriate behavior. This is the stuff I hate. It isn't Ben, just the inability to inhibit poor responses or tolerate even the smallest frustration. I am praying that the medications can be adjusted appropriately. I do feel that this would be the time for a new choice.
I wish the progress was faster. The one thing I have learned through all of this ....God's timing is better. As the impatience mounts, I still get "flickers' of God's hand in the midst of the mess. I watched a video tape taken by a friend when I was with Ben one afternoon. I asked Ben one thing that he prays for. Ben said, "I pray for my life." My friend asked Ben if God answers. Ben said," I feel like he does, but not extremely closely. He is making things known and taking care of stuff." Please pray that God fills Ben with His Spirit. Please pray for the healing to continue. Hope continues. (confident expectation).