Bentley's Journey with cCMV
Donation protected
it has been 3 years since I started this site. It has not been received as well as I had hoped. I am coming to you again with hopes of you sharing and possibly donating to our little Bentley.
Bentley blessed our family in February 2013. He was so tiny but so beautiful. Unfortunately by May we knew there was something just not quite right, Bentley was not looking at us, he was not trying to touch toys, not smiling and had what we called episodes. After a visit to a neurologist at 5 months we learned Bentley had significant brain damage and his future was uncertain.
We will fast forward to present time, it is January 2016.
Bentley has been formally diagnosed with a primary infection of congenital CMV. Bentley's damage from this virus are devastating.
Bentley has a severe form of Quadriplegic Cerebral Palsy with spastic hypertonia. Bentley has many seizures every day (50+) as well as severe brain damage with calcification scars throughout. He has Lennox Gastaut Syndrome (a seizure disorder that is known to never be managed) as well as Infantile Spazams, absent seizures, and tonic clinic seizures. Bentley currently is taking 3 seizure medications (klonapin, Keppra, and Onfi) and we are hoping to be gaining more control of these mind damaging seizures before they take away Bentleys joy.
Bentley has recently been diagnosed with GI Dysmotility. This means his colon is shut down. We have surgically placed a g/j tube and Bentley is now fed 24/7 with a drain from his tummy 24/7. We have been told at Phoenix Childrens Hospital there is nothing more they can do for Bentley so we wait and pray for insurance to allow Bentley to go to Texas for colon testing. This problem is making Bentley sick. Bentley is now unable to tolerate his minimum food intake and is beginning first stages of weight and muscle loss. Colon Dysmotility We are monitoring Bentley closely as calorie intake for Bentley provides the strength he needs to keep fighting. Prayers for insurance to send us is welcome and appreciated.
Bentley has left side hearing loss as well as Cortical Vision Imparement. Basically he has a hard time hearing as well as seeing, or understanding what it is he is seeing.
Bentley sees several therapists and specialists every month. He completes over 20 therapies monthly in conjunction with different procedures, specialist visits and try to squeeze in some fun. We are quite busy.
Due to his cerebral palsy and limited movement and vision issues life MUST be modified for Bentley to live and learn. Alternative therapies and conventions to meet experts and see the latest technology must be explored to better enhance Bentley's life.
Bentleys grandfather and I (his grandmother) formally adopted Bentley on our 15th wedding anniversary last year. It was an amazing day. Bentley has suffered so much loss in his short life that his grandfather and I have vowed to only surround Bentley with love and happiness, peace and gratitude, prayer and grace. This may have removed our typical "golden years" but it has given us a new purpose in life....to make little Bentley's life as wonderful as humanly possible!
the items we will need now and in the future are great and insurance will not cover these items, your help and prayers are appreciated.
We are looking to modify our home to literally fit Bentleys needs as well as the remainder of the family. Bentleys wheelchairs do not fit in any bathroom and barely slides into his room. We have ordered a hospital bed and once it is placed in his room there will not be much room for anything else. We have 3 large pieces of equipment that have taken over our dining room as a staging area for multiple forms of transition (Bentley needs a new position every 2 hours to prevent bed soars) and there is a lift to be ordered next month. We have a modified truck that Bentley drives and an electric wheelchair to practice on in hopes of having some self propelled motion in the future that we keep in out carport. We would love for this to be enclosed and turned into the staging/therapy room. Quite simply our Bentley has taken over in a home that was not made for him.
I have a page for Bentley if you would like to check it out and see what Bentley is up to. We would love to have you follow us. Look up Bentley's Journey on Facebook.
Thank you for looking at our page, we appreciate all gifts no matter how small. We also appreciate prayer!!!
God Bless and thank you!!!
Bentley's family
Bentley blessed our family in February 2013. He was so tiny but so beautiful. Unfortunately by May we knew there was something just not quite right, Bentley was not looking at us, he was not trying to touch toys, not smiling and had what we called episodes. After a visit to a neurologist at 5 months we learned Bentley had significant brain damage and his future was uncertain.
We will fast forward to present time, it is January 2016.
Bentley has been formally diagnosed with a primary infection of congenital CMV. Bentley's damage from this virus are devastating.
Bentley has a severe form of Quadriplegic Cerebral Palsy with spastic hypertonia. Bentley has many seizures every day (50+) as well as severe brain damage with calcification scars throughout. He has Lennox Gastaut Syndrome (a seizure disorder that is known to never be managed) as well as Infantile Spazams, absent seizures, and tonic clinic seizures. Bentley currently is taking 3 seizure medications (klonapin, Keppra, and Onfi) and we are hoping to be gaining more control of these mind damaging seizures before they take away Bentleys joy.
Bentley has recently been diagnosed with GI Dysmotility. This means his colon is shut down. We have surgically placed a g/j tube and Bentley is now fed 24/7 with a drain from his tummy 24/7. We have been told at Phoenix Childrens Hospital there is nothing more they can do for Bentley so we wait and pray for insurance to allow Bentley to go to Texas for colon testing. This problem is making Bentley sick. Bentley is now unable to tolerate his minimum food intake and is beginning first stages of weight and muscle loss. Colon Dysmotility We are monitoring Bentley closely as calorie intake for Bentley provides the strength he needs to keep fighting. Prayers for insurance to send us is welcome and appreciated.
Bentley has left side hearing loss as well as Cortical Vision Imparement. Basically he has a hard time hearing as well as seeing, or understanding what it is he is seeing.
Bentley sees several therapists and specialists every month. He completes over 20 therapies monthly in conjunction with different procedures, specialist visits and try to squeeze in some fun. We are quite busy.
Due to his cerebral palsy and limited movement and vision issues life MUST be modified for Bentley to live and learn. Alternative therapies and conventions to meet experts and see the latest technology must be explored to better enhance Bentley's life.
Bentleys grandfather and I (his grandmother) formally adopted Bentley on our 15th wedding anniversary last year. It was an amazing day. Bentley has suffered so much loss in his short life that his grandfather and I have vowed to only surround Bentley with love and happiness, peace and gratitude, prayer and grace. This may have removed our typical "golden years" but it has given us a new purpose in life....to make little Bentley's life as wonderful as humanly possible!
the items we will need now and in the future are great and insurance will not cover these items, your help and prayers are appreciated.
We are looking to modify our home to literally fit Bentleys needs as well as the remainder of the family. Bentleys wheelchairs do not fit in any bathroom and barely slides into his room. We have ordered a hospital bed and once it is placed in his room there will not be much room for anything else. We have 3 large pieces of equipment that have taken over our dining room as a staging area for multiple forms of transition (Bentley needs a new position every 2 hours to prevent bed soars) and there is a lift to be ordered next month. We have a modified truck that Bentley drives and an electric wheelchair to practice on in hopes of having some self propelled motion in the future that we keep in out carport. We would love for this to be enclosed and turned into the staging/therapy room. Quite simply our Bentley has taken over in a home that was not made for him.
I have a page for Bentley if you would like to check it out and see what Bentley is up to. We would love to have you follow us. Look up Bentley's Journey on Facebook.
Thank you for looking at our page, we appreciate all gifts no matter how small. We also appreciate prayer!!!
God Bless and thank you!!!
Bentley's family
Organizer
Rachael Rana Robinson
Organizer
Glendale, AZ
