Time for an update on Benjamin. Benjamin continues to live in Colorado and is doing very well. He lives in an assisted living home for young TBI survivors. Ben is active and healthy. He handles his activities of daily living well. He reads, loves word find puzzles, takes long walks, and uses an iPad for frequent texting and FaceTime calls. He has friends in his house and honestly makes new friends every time he steps out of the house for activities or errands. The house is in a beautiful suburban neighborhood and looks just like every other home in the area. Ben is not in an institution. Finding this level of care for him is such a place of rest. It is a miracle. The directors of his program love him and take care to see that his life is healthy and full. Jim and I visit as often as we can.

The struggles involving Ben’s memory, cognition and behavioral health remain. Although he can remember much of his former life, Benjamin’s mental age seems about 5 years old. He cannot remember if I visited last week or last month. The same questions are asked over and over again. Handling overly social behavior in public has become routine. He remains on fairly powerful medications for mood stabilization. The medications are working and Ben is happy. The joy is the the first thing people notice when they meet him. 

The dramatic story of Ben’s life seems more settled today. Of course nothing stays settled with long term care of TBI survivors. For now, it is good. Ben still tells everyone God saved him for a reason. Today we are just walking the journey. 

Today is a beautiful day in Colorado. It has been almost a year since the last update on Benjamin. He continues to live in the Denver area in a program for brain injury survivors. I had the opportunity yesterday to bring 2 new friends to visit Ben. Seeing Ben’s situation through their eyes helped affirm that Ben is where he needs to be. The friends were amazed at the bright and well decorated program house.They mentioned that the expected institutionalized atmosphere is totally absent. After looking at a calendar of activities, Ben’s active life was apparent. A tour of Ben’s room sports a wall of family photos and a picture of a world map. It was clean, neat and full of personal touches. The life skills workers in the house were pleasant caring and knowledgeable. Ben has responded to the new atmosphere over the last 2 years well. He is happy, busy and involved with the other residents of the house.

Benjamin continues to enjoy life in Colorado. Many changes have occurred in Ben’s living situation since the last post many months ago, all of them good. When Ben returned from the Oklahoma rehabilitation hospital summer 2017, the door opened for him to initially live in a new program in the Denver area. This program provided basic care and Ben initially did well, but Jim and I felt something was missing. With the set backs in Ben’s medical condition, memory, physical health, and cognition from the seizures in  July 2016, we both knew that something needed to change. Ben was bored. He was housebound day after day. It wasn’t enough just to be housed safely, Ben needed a program tailored to his needs. Ben deserved a rich life with friends and activity. He needed to feel significant. God provided the answer. Ben’s advocate, who has helped us from the beginning started a brain injury program a few years ago for all the right reasons. She has such a heart for these injured people and knew she could do it better. This advocate also loves Ben and knows him well. The state of CO approved her application to expand her program and a place opened up for Ben in a new house.

Benjamin has been back in Colorado since mid September. Two weeks ago Benjamin and I had a great weekend together. We went to a movie. Ben enjoyed Jumangi, a Starbucks coffee and dinner out. Sunday was spent attending church and going to brunch. He was joyful and engaging and loves talking to everyone he meets. Ben notices people's smiles and gives complements right and left. Jimmy at Chick-Fil-A was doing a good job and Ben told him so. Sometimes it's exhausting, but when I get frustrated with his enthusiasm, I take a step back and watch the effect Ben has on others. People are happy to step into Ben's world and share a conversation. He is open with sharing truth about his motorcycle accident. He tells them that God saved him for aeason. I believe that is true.

I visited Benjamin a week ago. Followers of the blog may recall that he was admitted to a neurorecovery facility in Tulsa, OK at the beginning of the summer. Unexpected provision allowed Ben a new chance at life and Jim and I were grateful for the opportunity. The facility has been a blessing with a blend of mental health and brain injury behavioral support, tailor made for Ben's needs. Ben's psychiatrist is a committed Christian who is prayerfully walking medical decisions. Ben is on new medications. I continue to hope these medicatons help mental clarity, memory and decision making. There has been progress over the summer, but it has been painstakingly slow. The discharge plan that was in place for Ben's next step was not going to work. Jim and I were faced once again with a dead end. I felt compelled to travel to Tulsa to tackle these issues head on and scheduled a meeting with Ben's multiple caregivers face to face. My old friends, hopelessness and dread, were present in full force. How many times have I been down this road? Almost too many to count. I prayed for answers and peace. For days leading up to the meeting, I felt God's reassurance, but all my human mind could see was the dead end.

Yesterday I met Benjamin at his new neurorecovery center in Oklahoma. It was a great day.  Ben and I went through the admission process together with smiles on our faces. After 7 months in a Colorado medical hospital with little or no outside activity, Ben was excited and happy. He was driven there by car and  he enjoyed every moment of being on the road. The events leading up to this unexpected chance at recovery are miraculous and many. Ben had been rejected by every discharge option for care in the entire state of Colorado. As a family, we were not in a good place. Confinement to a general hospital room was causing psychiatric and medical problems and we were powerless to move forward with Ben's care in any way. It was a place of waiting and if you have read any of my blogposts in the past....waiting is not what I do well. Exodus 14:14 says "The Lord will fight for you, and you shall hold your peace and remain at rest." Moses tells this to the Israelites when the Egyptians are bearing down on them by the Red Sea. God fights for his people. I believe the sequence of events leading up to this recover opportunity is a sign of God fighting  for Ben when there seemed to be little hope.

Jim is in Colorado visiting Benjamin this weekend. Ben has been in the hospital for 89 days. Initial admission was for a minor surgery to repair his brain shunt. The distal tube draining in his abdomen was up against the bowel.. easily fixed. The behavioral hospital where he was recovering took the opportunity to refuse to take him back, reasoning that Ben is too medically complicated to be readmitted. He is medically stable at this time.  Benjamin's brain function, however,  has not recovered since the incident in July when an inappropriate discharge from a different hospital after brain surgery resulted in four days of continual seizures. All of Ben's medications were inexplicably and abruptly stopped as a result of this disastrous discharge. Status epilepticus was the direct result. As mentioned in my previous post, the seizures stole much of Ben's progress made since his brain injury in 2012. Although Ben has not recovered, he is making some progress. He does not need his wheelchair. He can handle self care and calls us on the phone often. He listens to his CD collection and watches movies and sports. Ben's memory is severely damaged. He doesn't know where he is most of the time and his behaviors have been worrisomely aggressive. We are back at the beginning, a "do over", like Ground Hog Day.  I have had a few rough moments looking at the picture in front of us. At this time there are no discharge options for Ben's care and he cannot be cared for at home.

Today, Ben and I spent Thanksgiving together. Jim and I were called the day before Thanksgiving with the news that Ben’s mental state had deteriorated over the previous 48 hours and that he needed another brain shunt revision. His CT scan once again showed signs of increased pressure. Surgery for shunt revision was performed successfully last evening. Ben was somnolent and minimally responsive for much of the day today as a response to anesthesia, medications, and stress. I was concerned that major ground had been lost again in his recovery. We have been down that road many times. Later today however, he cracked a joke or two with the doctors, watched a hockey game, and spent some time looking at magazines. Ben seems ok tonight. I believe tomorrow will be even better. 

Ben has been in  a season of struggle, loss, and medical decline. In April, he started having behavioral struggles  coupled with cognitive loss. Experience has taught Jim and I to push for assessment of the VP shunt,  which manages fluid in Ben’s brain,  when we hear reports of  any worrisome changes in behavior. Repetitive brain CT scans were performed as a response to the mental decline over the last 3 months. Finally, when Ben’s mental decline intensified,  he was admitted to a hospital for 2 weeks where many of his medications were changed. On June 11th, I visited Ben and became very concerned. Something was wrong. He was irritable, unhappy and mentally slow. The irritability moved to aggression and on July 2nd, Ben was taken to the hospital and placed on a mental health hold. We again asked for a brain CT scan. An astute neurosurgeon reviewed the scan and compared it to all of the scans dating back to April. Ben’s shunt wasn’t working and had not been working for a long time. He had changes in brain ventricular size and this means an increase in brain pressure. July 4th he underwent brain surgery for VP shunt revision.

I am writing this blog update as I sit on a delayed plane waiting to leave for Houston. So far the plane has been delayed 2 hours. Al least the view is beautiful here in Denver. I spent the weekend with Ben in Colorado. Our time together was bittersweet. We have not seen each other for a while. Ben has been struggling with significant physical and  mental health issues. After 2 years of health and stability, life became unpredictable. Ben was unhappy and frustrated. The frustration manifested in troubling behaviors that Ben seemed powerless to curtail. The wonderful professionals who run the TBI home where Ben lives, stuck with him through thick and thin, but they were at a loss as to how to help him. Services, medical and psychiatric, are a constant struggle for people who struggle with TBI. As soon as “brain injury” is brought up, doctors and hospitals back pedal as fast as they can.

February 22nd was Ben's 27th birthday. He celebrated by eating birthday cake and had a day of fun with activities and receiving calls and messages from friends and family. Social contact is what Ben loves best and he enjoyed every minute of the day. Ben still lives in Colorado. He still requires  a supportive environment that caters to the needs of a traumatic brain injury survivor.  Although Ben can do many things, he still has deficits in memory and needs monitoring in social situations. His problematic behaviors have diminished with good medical care and a supportive environment. He  is quite a character with a quick smile, a great sense of humor, and an eclectic fashion sense. Everyday I thank God for leading us to Colorado and for the amazing helpers that help Ben navigate his world.

Jim visited Ben in Colorado last weekend. He is still living in a beautiful Colorado suburb, attends church and like all of us, has daily victories and struggles. Ben has started guitar lessons. I am excited that he is eager to learn something new. He is practicing "Happy Birthday" to play for his dad's birthday next month. Ben has also developed an interest in cooking for the other residents of his house. It is a blessing for Ben to move toward any new goal, no matter how small.

My visit with Ben in Colorado last weekend was bittersweet. He has made progress in some areas but discouragingly slow progress in many areas of struggle.  I was reading this morning about the common problems for patients recovering from severe traumatic brain injury. Ben has everything on the list. Troubles with problem solving, impulse control, and self monitoring, short term memory, learning, and language retrieval are all there. Ben doesn't grasp the implication of a given action and his impulsivity may show up as verbal utterances, snap decisions and poor judgement. His irritability and emotional instability is much better on medication which is a blessing. The article on TBI sequelae perfectly states these changes by stating "an individual with TBI may have a vague sense that he is 'not who I used to be' and yet struggle to define the specific ways in which his personality differs from prior to the injury."
The article goes on to mention that for many TBI survivors, the ongoing needs for support are not being met. Through the grace of God that is not true for my son. He is in a marvelous place.

Last weekend, I traveled to Colorado to see Ben. Jim and I try to visit at least once a month. Medically, Ben has had a few set backs. Behaviors surface occasionally that need care, intervention and sometimes medication adjustments. He had just come out of a period of struggle and things were much better. I have learned through this journey with Ben that God will provide the road, the answers and peace. The director of the home where Ben lives honestly likes him. She feels his sense of humor and personality add  much to lives of the other people in the home. She feels like Ben is worth it. This may sound sad, but Jim and I have been fighting this battle for Ben alone for so long, to have someone fighting along side of us is such a relief and a blessing. And....of course God is on our side. Jim and I no longer panic when the wheels seem to fall off the wagon. Either God will fix the wheels or we find out that the wagon rolls just fine without wheels.

On Wednesday, January 27th I got in my car and made the 40 minute drive to Ben Taub Hospital here in Houston. It has been over 2 1/2 years since Ben was hospitalized in the neurosurgical intensive care unit at Ben Taub. I drove the familiar route and parked in the familiar parking garage, taking care to remember the floor my car was parked on. I have lost count how many times I had forgotten where my car was parked in this garage. Today, I was going to remember.  As I walked toward the front door of the hospital, passing people from all walks of life, it didn't seem like years had gone by since Ben's injury. Ben Taub cares for the indigent of Harris County in Texas. And because of it's excellent trauma center, it not only cares for the indigent, it also cares for the wealthy and everything in-between. The medical and nursing staff at Ben Taub is dedicated, skilled, brilliant, and overworked. When Ben was in the intensive care unit, an ICU nurse told me about patients that had walked through the doors of that unit to thank the professionals who had cared for them years after their devastating injury. The hope in her voice led me to believe that this didn't happen nearly often enough. Today I was there to tell them about Ben.

Ben just walked up the sidewalk of his home in Colorado after giving me a hug and a huge smile. He is content. . During this Thanksgiving season, I am SO grateful for the path that brought us here. To find exactly what Ben needs to live a productive life at this stage of his recovery is a miracle. I praise God who never leaves us alone to fight or suffer. He had the miracle planned even when all I could see was darkness.

The weather in Colorado was warm and beautiful this weekend. Ben and I shopped and went to restaurants. We took drives with the music turned up. Saturday we spent time getting Ben's malfunctioning computer up and running. I put a few finishing touches on his room.  But even with all the joy, this is not a fairy tale with a storybook ending.

Today is a beautiful day in Colorado. I am visiting Ben. His life has settled into a routine in the beautiful Colorado neighborhood where he lives. As the months unfold, Ben is still struggling with memory. As predicted, because of the severity of Ben's injury, his capacity for remembering what happens day to day remains impaired. His post injury amnesia has remained which is a poor prognostic sign for long independent term recovery. Behavior issues are better, but often there is no "filter" and things slip out of his mouth that are better left unsaid. He can't process steps to a goal and his stated goals seem out of reach.

Today marks 26 months since Ben's injury. Currently it seems to be a season of rest for our family because many of the harsh problems described in previous posts, have resolved or have settled down to a manageable place.  The Colorado house where Ben currently lives is staffed with personnel trained to maximize the lives and potential of  young men who have sustained a traumatic brain injury. The home is in a beautiful suburban neighborhood with mountain views and wildlife. There is a back deck where Ben spends much of his time outside with nature. Today Ben went to a nearby lake and spent time fishing and hanging out. He has been to festivals and concerts. He goes to the gym three times a week.The staff includes him in shopping, household upkeep, and cooking. Trips to restaurants and movies are frequent. Ben has developed good friends in the place that he lives. It is not all fun and games, however. Ben is still receiving rewards and consequences for his ongoing behavior management program. The director also has a curriculum for working on the cognitive and memory issues that affect all of the residents in this house. Every time I hear about the effort this director puts into her ongoing search for activities to enrich the lives of these young men, I thank God for her heart and calling.

Last weekend was memorable for the Ramsey family. Patrick, Ben's younger brother graduated from the University of Wyoming. The university is 125 miles from where Ben is living in Colorado. The plan was to travel to Laramie and then to visit Ben. Snow and horrible weather shut down all roads out of Laramie. Driving behind a snowplow in May was definitely an adventure for this Texan

Next month will be the second year anniversary of Ben's accident. I have learned first hand in the last two years that the road to recovery for patients with a traumatic brain injury is often frustrating and long.  In the beginning when I didn't know if Ben would live through his injury, I read of the frequent problems of others affected by TBI. The list seemed insignificant at the time....after all we were in a battle for Ben's life. Now I "get it". We are smack dab in the middle of what seems to be common struggles for those recovering. Understanding the mental,  physical, and behavioral deficits, learning coping techniques and promoting improvement for these deficits, and looking for the tools to achieve a meaningful life are daily obstacles for us and for many others.