Over the past couple of weeks, John's physicians have begun changing some of his medications. As with most aspects of brain injury, there is the constant hope of finding the perfect combination of drugs and dosages to help John along in his recovery. Unfortunately, when his medications are altered, it sometimes causes a bit of a setback until they have the opportunity to fully transition into his system.
One of the physicians John recently went to see was a movement specialist. I had no idea that there was such a specialty however recently John has been having difficulty with movement, particularly with walking. Although he has had almost constant rehabilitation, one of the side effects of brain injury can be dystonia and John has recently been showing indications of having it. Although there is no confirmed diagnosis, John's physicians will be watching closely and altering his medications as necessary.
The best and most descriptive definition of dystonia is, "is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.[1] The disorder may be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g., lead poisoning) or reaction to drugs, particularly neuroleptics.[1]" While we don't know what exactly caused this to happen, we are glad that his physicians noticed it almost immediately and have been aggressive with treatment plans. Unfortunately, there are no real "cures" for dystonia and the best options involve long term medication administration and trying to alleviate any pain associated with it.
John fits into a unique catagory in that he has an injury which is cannot be treated in a traditional way. Brain injury is specific to the individual. Although there is statistical data about brain injuries, no person can say for certain what his long-term prognosis might be.
You may have noticed that there has been much talk of traumatic brain injury with veterans returning from war and lately there have been some studies which show that concussions are also a form of traumatic brain injury. There have also been studies to determine the effects of repetitive concussions in NFL players. While John's injury is of a different type, we know that when he was younger and playing sports he suffered at least a couple of concussions. We have been told that at times, those who have had concussions then suffered a brain injury later have a bit of a harder time recovering. The brain is fairly resilient but it can only take so much. John's tests have revealed that he has no "damage" to his brain however the tests simply cannot show how many or which pathways are injured and in need of repair because his brain was without oxygen.
This is where the being patient part comes in. As much as we want John to heal quickly, this is a process which will take time. There will be times when his healing process will be less overt. This doesn't mean it isn't happening, it just means that it's hard for us to see. His progress has been so miraculous up to this point...it's remains unbelievable to me that 6 months ago he was in a coma and we weren't given much hope of him surviving by healthcare professionals much less that he would have healed so much in the past months. He certainly has been given all available opportunities to thrive despite his injury and this will continue.
Wednesday, January 6, 2010
Sunday, January 3, 2010
Christmas 2009
The pups were so happy to see John and Holly...these 3 pictures were taken when we first got to our parents house:
Carla, Riley and Hol at the nursing home where Gammy resides:
Mel, Gammy and Holly:
Gam and Hol sharing a memory!
Mel and Gammy:
Carla, Riley, Ed and Hayley...Gammy shared her cake with Haley!
Gammy and Haley:
Holly and Hayley in foreground and family at the table:
Mom working hard:
Harley tuckered out:
Gracie and Hayley enjoying the sun and pets from John:
Dad and John share a laugh:
The cook team (Leslie, Mel and Ed):
Riley the cowboy...showing how to use a bow:
John and Carla outside:
Dad, Riley, and Mom:
Over the Christmas holiday, Mentis closed for a couple of days to give their employees a break and give residents the opportunity to spend more time with family members. This gave us the chance to take John out of Houston for the first time since he had his heart attack and I should mention that it was Holly's first time leaving the city as well. We decided that a road trip was in order and since their dogs are with our parents in Boerne, Texas there was only one destination that would do so we headed west on Christmas day! We spent time with our folks, Ed and Annette and Honeygal, then our brother Leslie and his wife Carla and son Riley came over and we had a fish/oyster fry and we couldn't have asked for better weather or a better time!
There are some things which have to be considered when John leaves the rehabilitation facility for even a day. There are a lot of medications which must be given throughout the day at specific times 9am, noon, 4pm and before bedtime. Holly and I have become quite the little pharmacists and use the ziplock and sharpie method to section out what gets given when and on which day. We also take Johns wheelchair and walker along just in case and Holly packs his clothing and toiletries which is really good because I am a terrible packer and rarely go anywhere without forgetting something important. The other thing is that at this point John is on a heart healthy diet so keeping enough calories coming into his body to keep him from losing any weight requires trying to get him to eat throughout the day. Planning ahead to make sure there is food in the car is important!
Another reason we chose to go to Boerne is that our paternal grandmother, Mildred Moynahan Northrup, who is 91 has been ill and may soon require hospice. I could tell story after story of how "Gammy" has impacted our lives but suffice to say that she and Holly have always been extremely close and when we were younger, they rarely went a day without talking on the phone. We spent most weekends with Gammy and with New Years around the corner I am reminded that our New Years celebration was always at Gammy's house and traditionally culminated into some great games of yahtzee, drinking root beer out of frozen mugs, and sparklers. To this day, I love sparklers and even though we learned later that when the ball dropped it wasn't actually midnight for us, we were just as content to celebrate with the folks in New York and head to bed afterwards.
During Christmas when we were kids, Gammy would stay in the room with us to keep us from getting out of bed at 3am to see if Santa had come and she was so resourceful when it came to entertaining us that I am still amazed at the memories. In these days of electronics, I am reminded that we pretty much thought there was nothing better than getting in her Chevy Nova and going to the parking garage where she worked (Frost Bank in downtown San Antonio) and she would drive us to the top of the parking garage and back down. Okay, so it may not sound like a ton of fun but this was a circular ramp and to this day, no carnival ride has ever compared to the thrill of that thing. With Gammy, life was always fun and her outgoing and friendly attitude toward the people around her and her obvious and tremendous love for us is something I will cherish for all of the rest of my life. John used to love teasing her and she loved being teased. She was at John and Holly's wedding and all other family events and they have always made a point of going to see her when in San Antonio and now Boerne.
This past year has been challenging in so many ways and yet it's hard not to feel grateful and hopeful for a better 2010. Looking out over the horizon makes all things seem possible and all things within our grasp. Although we might face hurdles, it is with gratitude and acceptance that we will continue to conquer all that we are given and our hope for the new year is John's continued success and good health along his journey. I wish to thank each of you again for your ardent support and love and wish everyone a healthy and prosperous 2010!
Carla, Riley and Hol at the nursing home where Gammy resides:
Mel, Gammy and Holly:
Gam and Hol sharing a memory!
Mel and Gammy:
Carla, Riley, Ed and Hayley...Gammy shared her cake with Haley!
Gammy and Haley:
Holly and Hayley in foreground and family at the table:
Mom working hard:
Harley tuckered out:
Gracie and Hayley enjoying the sun and pets from John:
Dad and John share a laugh:
The cook team (Leslie, Mel and Ed):
Riley the cowboy...showing how to use a bow:
John and Carla outside:
Dad, Riley, and Mom:
Over the Christmas holiday, Mentis closed for a couple of days to give their employees a break and give residents the opportunity to spend more time with family members. This gave us the chance to take John out of Houston for the first time since he had his heart attack and I should mention that it was Holly's first time leaving the city as well. We decided that a road trip was in order and since their dogs are with our parents in Boerne, Texas there was only one destination that would do so we headed west on Christmas day! We spent time with our folks, Ed and Annette and Honeygal, then our brother Leslie and his wife Carla and son Riley came over and we had a fish/oyster fry and we couldn't have asked for better weather or a better time!
There are some things which have to be considered when John leaves the rehabilitation facility for even a day. There are a lot of medications which must be given throughout the day at specific times 9am, noon, 4pm and before bedtime. Holly and I have become quite the little pharmacists and use the ziplock and sharpie method to section out what gets given when and on which day. We also take Johns wheelchair and walker along just in case and Holly packs his clothing and toiletries which is really good because I am a terrible packer and rarely go anywhere without forgetting something important. The other thing is that at this point John is on a heart healthy diet so keeping enough calories coming into his body to keep him from losing any weight requires trying to get him to eat throughout the day. Planning ahead to make sure there is food in the car is important!
Another reason we chose to go to Boerne is that our paternal grandmother, Mildred Moynahan Northrup, who is 91 has been ill and may soon require hospice. I could tell story after story of how "Gammy" has impacted our lives but suffice to say that she and Holly have always been extremely close and when we were younger, they rarely went a day without talking on the phone. We spent most weekends with Gammy and with New Years around the corner I am reminded that our New Years celebration was always at Gammy's house and traditionally culminated into some great games of yahtzee, drinking root beer out of frozen mugs, and sparklers. To this day, I love sparklers and even though we learned later that when the ball dropped it wasn't actually midnight for us, we were just as content to celebrate with the folks in New York and head to bed afterwards.
During Christmas when we were kids, Gammy would stay in the room with us to keep us from getting out of bed at 3am to see if Santa had come and she was so resourceful when it came to entertaining us that I am still amazed at the memories. In these days of electronics, I am reminded that we pretty much thought there was nothing better than getting in her Chevy Nova and going to the parking garage where she worked (Frost Bank in downtown San Antonio) and she would drive us to the top of the parking garage and back down. Okay, so it may not sound like a ton of fun but this was a circular ramp and to this day, no carnival ride has ever compared to the thrill of that thing. With Gammy, life was always fun and her outgoing and friendly attitude toward the people around her and her obvious and tremendous love for us is something I will cherish for all of the rest of my life. John used to love teasing her and she loved being teased. She was at John and Holly's wedding and all other family events and they have always made a point of going to see her when in San Antonio and now Boerne.
This past year has been challenging in so many ways and yet it's hard not to feel grateful and hopeful for a better 2010. Looking out over the horizon makes all things seem possible and all things within our grasp. Although we might face hurdles, it is with gratitude and acceptance that we will continue to conquer all that we are given and our hope for the new year is John's continued success and good health along his journey. I wish to thank each of you again for your ardent support and love and wish everyone a healthy and prosperous 2010!
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