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.

Saturday, January 4, 2014

 We hope and pray that the new year is full of healing and hope as Ben moves into the 19th month since his traumatic brain injury. Ben continues to work hard in the therapeutic program at the neurorecovery center. Although he is able to do many things well, Ben's significant memory, behavioral and anxiety problems are a barrier to him living independently.  Jim and I are currently being faced with struggles for appropriate care as the January discharge date from the neurorecovery draws closer. Ben was able to come home for Christmas. He had not returned home since the injury. It was a joyful time with many bittersweet moments. Ben wanted to stay home. He isn't ready.

Ben's level of function and his sweet heart is a gift. I shed a few tears at the end of the visit because this journey, which has seemed so long, is actually just beginning. Sometimes it is overwhelming when I think of what is in front of us in the midst of our chaotic lives, until I remember that God promises to "make our paths straight."

The next plan for Ben is to move to an assisted living facility, hopefully in a home like environment, specifically geared toward traumatic brain injury. This would optimally involve more independent living away from a hospital or recovery environment. It will be important to have a instructional day program in place. Ben's doctor in Houston, Dr. Lilly, has often mentioned that the regenerating neurons in Ben's brain have to be continually stimulated because they " don't know where to go". How to structure this environment when residential  neurorecovery centers are no longer an option, is a very difficult problem in the state of Texas.  Jill Bolte Taylor's book, My Stroke of Insight, is about her recovery from a ruptured brain aneurysm. It took 8 years for complete return of brain function.  Ben cannot live in a hospital environment indefinitely. He can't come home yet, and he needs a life.

Jim and I have learned much. Texas is unique. Ben has private insurance and Texas medicaid. Jim and I are willing to support Ben as he recovers, but the cost of care is unbelievably high. Even if we paid "fee for service' for the level of care Ben needs, there is not one option in the state of Texas that we can find that is a good fit. Texas Medicaid would help if Ben hit the truck before his 18th birthday but not after. Private insurance doesn't cover assistant living level of care. Because traumatic brain injury is not excluded from state insurance coverage in other states, we are learning that other states have more opportunity for living and recovering. I believe God is moving us toward one of those opportunities. The door seems to be opening toward a solution once again. I would appreciate any prayers to help "turn the darkness before us into light".

As I am writing this, I am answering numerous text messages from Ben. He carries an iPad mini every where he goes. One result is prolific text messaging. Ben also uses the iPad  to record things he knows he will forget, listen to music and to take and sent photos. It blows my mind that he can do all these things. His sense of humor is great. Tonight, in conversation, I reminded Ben that he was terrified of sharks when he was little. The response was," Hahaha oh yeah! I was a little dorky Benny boo!?!?" Ben is worried about his future, but he has not lost his joy. We have not lost our confident expectation that this will be good.



11 comments:

  1. Thank you for the update, Karla! We are praying for God's best for Ben, knowing he will direct you and provide exactly what Ben needs with perfect faithfulness.
    I'm so glad you all had a great Christmas together at home!
    Love you!
    Laura

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    1. Thanks, Laura. You have been such a help through this journey. Every message has helped so much.

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  2. Father God, we praise you for how far Ben has come and for all the miraculous doors that You have opened for him. We ask you to amaze and bewilder us again with another opportunity that is just right for Ben and financially viable for his parents. Continue to keep Ben immersed in joy and continue to fill Karla and Jim with hope and peace.

    Amen.

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  3. I am so glad Ben was able to spend Christmas with the family. We continue to pray for the perfect place for Ben's miraculous recovery to continue. God has been faithful to lead you and Jim to the perfect place for Ben at each step of his recovery and He will continue to lead you. Ben continues to heal and grow and recover as his journey to wellness brings God glory. May you have the Perfect Peace of His Presence as you journey on. Sharon

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  4. Coach V - Ben VigilJanuary 5, 2014 at 7:55 AM

    I am so happy for Ben, and I get those text and facetime chats all the time too

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  5. Appreciate your communication with Ben. I know at times he feels isolated. Staying in touch with others has been SO good for him.

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  6. Thank you for keeping the updates going. Please tell Ben his old Heartlight staff (Jeff) has been following the updates and am praying for him. My number is 480-236-7192 if he ever wants or needs someone to talk to or you can text me his number.

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    1. Thanks! I will tell Ben. Will send you his contact information and give Ben your number. You may need to send him a picture. His memory is amazingly good, but a visual would help.

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  7. Karla Ramsey, my name is Roger, Ben and I have been friends for a while and I lost contact with him. I came across your journal today and am heart broken over what happened. I will add you, Ben and your family to my prayers. I would like to talk and even come visit Ben if he feels up to it. My contact info is 409-828-1192. Please let Ben know I am thinking about him and praying for his recovery. Thank you

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    1. Roger, Thanks for finding the blog and I received your message at my office. Ben is in a state of transition right now, but he can call in the next week or two. He definitely needs the prayers. Lots of struggles right now.

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