I wanted to give a quick update about John's appointment today. Physicians injected him with the medication that will be in the pump and his mobility improved slightly. He was able to move his feet better and his doctors have elected to move forward and he will be scheduled for the surgery to implant the pump in coming weeks. The test today was a small amount of the medication and although the pump can be set to administer whatever amount of medication is required, there is great hope that by seeing some minor movement improvement that the pump will be successful. I will update when we get more information about when this procedure will occur, etc.
As always, thanks so much for your thoughts and prayers!
Monday, February 22, 2010
Wednesday, February 17, 2010
February 16, 2010
The following photos were taken on a recent trip to Galveston:
There have been some developments with John's progress lately so I wanted to get the word out about how he is doing. I mentioned previously that John has been having significant rigidity and some spasticity in his muscles. This has made it extremely difficult to walk and even eating has been hard for him. Swallowing requires a lot of muscle control and John had begun choking on his food. He was seen by a specialist who gave him medicine to help and has begun to improve however there was concern about how to help him long term.
John's primary physician decided to send him to see if he might be eligible for a trial medication which would be helpful. Rather than me try to explain it, here is the information about this trial:
"The baclofen pump system is the intrathecal (directly into the spinal fluid) method of delivering the medicine. The system consists of a catheter (a small, flexible tube) and a pump. The pump — a round metal disc, about one inch thick and three inches in diameter — is surgically placed under the skin of the abdomen near the waistline.
The pump stores and releases prescribed amounts of medicine through the catheter. The pump is refilled by inserting a needle through the skin into a filling port in the center of the pump. With a programmable pump, a tiny motor moves the medicine from the pump reservoir through the catheter. Using an external programmer, your treatment team can make adjustments in the dose, rate, and timing of the medicine.
Patients must return to their doctor's office for pump refills and medicine adjustments, typically every two to three months. The pump is taken out and replaced at the end of the battery's life span, which is usually five to seven years."
He will be going to the doctor on Monday February 22 and at that point they will perform some tests to see how he responds to the medicine. If the results are good then he will be scheduled for the surgery to place the pump in his body. Our hope is that this will provide John with much needed comfort and enable him to thrive in all aspects of his therapy and his life.
John's physician mentioned recently that with the rigidity that John has been having, it is difficult to measure his progress and of course, there is the constant fear that he is not receiving enough nutrition and fluids because since John is having difficulty swallowing, eating and drinking is an arduous and time consuming process. As you may remember, John had some kidney issues in the beginning of his hospitalization, so it is critical that he is receiving appropriate amounts of fluids.
Another issue which is easy to overlook is how John is feeling from an emotional standpoint. Since it is difficult for him to talk and since his short term memory has not returned yet, we must rely on knowing him and what he does tell us to get a compass reading on how he is. Of course, Holly is best at this...she can tell what he is thinking and feeling almost without words but other caregivers have had to take extra time in making sure John is okay. We have been told that depression is common with folks who have brain injury and it is underdiagnosed as a complication. Many times, the focus becomes keeping these patients medically stable and their emotional stability gets put on the back burner. Holly takes John somewhere every weekend. Either they go run errands together or they go to church or they go eat. Last weekend, they went to Hudd's Galveston beach house and it is these outings which help with John's morale and he lights up when he gets in the car!
John is currently still at Mentis Rehabilitation Facility however we are once again on the search for the next place for John. Insurance requirements only allow for so many days at these facilities and we are rapidly approaching a deadline for this level of care. I should mention that if you have never dealt with insurance providers, it is a maze of paperwork and requires a voracious reader to figure out all of the parameters of care. This process requires almost daily phone calls to providers and can be extremely confusing. Holly has constantly stayed on top of all aspects of John's care including making sense of John's benefits. We have been helped along the way by SBISD thankfully and the human resources department has been exemplary and specifically Vicky Louis. Everyone has been helpful and we know that wherever John goes next, it will be the perfect place for him to continue progressing and healing.
I will update with more information after John's appointment and in the meantime, let's keep our fingers crossed!
There have been some developments with John's progress lately so I wanted to get the word out about how he is doing. I mentioned previously that John has been having significant rigidity and some spasticity in his muscles. This has made it extremely difficult to walk and even eating has been hard for him. Swallowing requires a lot of muscle control and John had begun choking on his food. He was seen by a specialist who gave him medicine to help and has begun to improve however there was concern about how to help him long term.
John's primary physician decided to send him to see if he might be eligible for a trial medication which would be helpful. Rather than me try to explain it, here is the information about this trial:
"The baclofen pump system is the intrathecal (directly into the spinal fluid) method of delivering the medicine. The system consists of a catheter (a small, flexible tube) and a pump. The pump — a round metal disc, about one inch thick and three inches in diameter — is surgically placed under the skin of the abdomen near the waistline.
The pump stores and releases prescribed amounts of medicine through the catheter. The pump is refilled by inserting a needle through the skin into a filling port in the center of the pump. With a programmable pump, a tiny motor moves the medicine from the pump reservoir through the catheter. Using an external programmer, your treatment team can make adjustments in the dose, rate, and timing of the medicine.
Patients must return to their doctor's office for pump refills and medicine adjustments, typically every two to three months. The pump is taken out and replaced at the end of the battery's life span, which is usually five to seven years."
He will be going to the doctor on Monday February 22 and at that point they will perform some tests to see how he responds to the medicine. If the results are good then he will be scheduled for the surgery to place the pump in his body. Our hope is that this will provide John with much needed comfort and enable him to thrive in all aspects of his therapy and his life.
John's physician mentioned recently that with the rigidity that John has been having, it is difficult to measure his progress and of course, there is the constant fear that he is not receiving enough nutrition and fluids because since John is having difficulty swallowing, eating and drinking is an arduous and time consuming process. As you may remember, John had some kidney issues in the beginning of his hospitalization, so it is critical that he is receiving appropriate amounts of fluids.
Another issue which is easy to overlook is how John is feeling from an emotional standpoint. Since it is difficult for him to talk and since his short term memory has not returned yet, we must rely on knowing him and what he does tell us to get a compass reading on how he is. Of course, Holly is best at this...she can tell what he is thinking and feeling almost without words but other caregivers have had to take extra time in making sure John is okay. We have been told that depression is common with folks who have brain injury and it is underdiagnosed as a complication. Many times, the focus becomes keeping these patients medically stable and their emotional stability gets put on the back burner. Holly takes John somewhere every weekend. Either they go run errands together or they go to church or they go eat. Last weekend, they went to Hudd's Galveston beach house and it is these outings which help with John's morale and he lights up when he gets in the car!
John is currently still at Mentis Rehabilitation Facility however we are once again on the search for the next place for John. Insurance requirements only allow for so many days at these facilities and we are rapidly approaching a deadline for this level of care. I should mention that if you have never dealt with insurance providers, it is a maze of paperwork and requires a voracious reader to figure out all of the parameters of care. This process requires almost daily phone calls to providers and can be extremely confusing. Holly has constantly stayed on top of all aspects of John's care including making sense of John's benefits. We have been helped along the way by SBISD thankfully and the human resources department has been exemplary and specifically Vicky Louis. Everyone has been helpful and we know that wherever John goes next, it will be the perfect place for him to continue progressing and healing.
I will update with more information after John's appointment and in the meantime, let's keep our fingers crossed!
Wednesday, January 6, 2010
January 2010
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.
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.
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!
Monday, December 21, 2009
December 21
John and his niece Sydney
Sydney, John, Holly and Rayray
Paulette and John
Hudd and John
Sydney is raising a goat as a FFA project. His name is Johnjohn and here is a photo of his namesake!
So, only 4 more shopping days until Christmas! I hope that everyone is avoiding the last minute hustle and bustle or if you enjoy that sort of thing, I hope you are getting into the spirit!
I thought maybe I should share a little about nuts and bolts of how John is doing. Sometimes I realize that I talk about the more esoteric aspects of what is happening with him and there are times when I get asked..."But Melanie, How is John REALLY doing?" The simple truth is that it changes from day to day and sometimes even in increments of minutes. There are times when John is extremely clear in what he says and he conveys deep gratitude to us and those around him. During these times, his awareness of his condition is staggering and at times it brings him to tears. It's as if he knows how he used to be and he is able to deliniate where he is now and he is fearful that he won't get back to the "old John". It is during these times when we try really hard to let him know that we are here for him and we are patient and we know he will be okay. The best way to describe these moments is that a window opens and a breeze of insight blows between John and those around him and then as suddenly as it opened, it shuts again. We don't know the key to keeping that window open but it is the thing that gives us constant reassurance that every possible avenue in John's journey is being explored and he is being given every opportunity to thrive.
His body movement is at times fluid and at other times, very rigid. After receiving the Botox treatment some weeks back it seemed to help with the rigidity but John requires help with walking and all other activities of daily life such as eating, bathing, etc. He is able to feed himself and has been for some time however it is a lengthy and tedious process. His caregivers are exceptionally patient as you might imagine and I can only say that folks who perform jobs in rehabilitation and nursing settings are true angels. They are underpaid and overworked and yet somehow manage to remain joyful and positive about the work they do. If you have ever cared for an ailing loved one you know how difficult it can be and for them to be able to work with strangers in this capacity leaves me awestruck.
John makes progress daily. Although it isn't the same type of progress as going from coma to awake or nonverbal to speaking full sentences, it is just as miraculous. There are subtle changes and each day raises that healing bar up another notch and our level of hope continues to soar.
Tuesday, December 15, 2009
December 14
Elvis came to Mentis and put on quite a show!
The above picture is of John and his niece Sydney napping together while John was home for the day over the weekend. At almost all family events, the eventual result would be John napping...usually with all the dogs so I found it a fitting addition here!
Every family has traditions for the holiday season and certain things they look forward to. Sometimes it's a particular food item or maybe a favorite Christmas ornament that gets brought out once a year and takes us back to childhood memories every time we see it. For me, this year marks a new thing to look forward to and that is John's continued progress. I'm quite sure that as the years pass by in the future, the thing I will remember most about this holiday season is that we have been given the perfect gift and that is John's continued progress and good health. I can't imagine asking for a better gift and although this one isn't wrapped and under the tree, it is deep and meaningful and so special that John will continue to be a beacon to those around him and a constant example of how faith and perseverance can guide us through even the hardest times.
For us, this year is a time of change. While unexpected, we are in a dynamic place as we continue along John's journey and wait for which turn might be next. Instead of pulling out the big tree and decorating the house, Holly decorated John's room at Mentis. There is a smaller, yet festive, tree with lights on the table near his bed and Christmas cards and candy which keeps the staff happy and full of sugar! Instead of making a huge Thanksgiving feast, we spent the day with family and friends (thanks to Tom and Michelle for a great meal!). And instead of doing the usual pre-Christmas fish fry (my favorite thing John cooks!) we are going to spend the day relaxing and enjoying each other. Holly and I will also be meeting up with my parents and Honeygal so John will get to spend some time with his beloved Boston Terriers, Harley, Hayley and Gracie. Sometimes the greatest gifts come in four-legged form and being around those crazy puppies can't help but make you smile! I should mention that the pups remain in Boerne with my folks and are thriving and receiving constant care and tons of attention.
This season has given me pause on all levels. It has made me reevaluate all things which are important and I am so grateful for my friends, and my family without whom, this past 6 months or so would have been unbearable. We sometimes take for granted those close to us and when the chips are down we find out quickly those who are our true angels. Our lives are changed inexorably since John had his heart attack and while we know that the next few months and even years will be a challenge, we also know that we have tremendous support from those who love him and us and we are thankful beyond words.
Tuesday, December 8, 2009
December 8
At times throughout John's journey we have been touched by the kindness of others. We find strength in the small things and of course in the progress that John has made over the past 6 months. Every time we start to falter in our faith we are reminded that we are blessed to know John and we can look in various directions and know that we are lucky in so many ways. At Mentis, John is surrounded by folks in similar or even worse situations. We constantly try to acknowledge the good that is happening but at times we get caught up in the, "What if's?" and the idea of how things used to be. We know that this is John's path and we have come to the realization that it is also our path. We also realize that John has made us realize that it is the subtle nuances in life which make it worth living.
I was recently with John for dinner and it was dark outside. As I told him I was leaving he unlatched his seat belt and stood and told me that he would walk me out to my car because it was dark outside and he wanted to make sure I was okay. This brought a flood of emotions into my heart and made me see that while things are different today than they were last December, John still wants to make sure those around him are safe and happy and he is such a giving soul. It was also the first time that I have been with John since June that he stood on his own without chiding from me or his therapist and there was such reciprocity in our friendship and our commitment to family. John frequently tells me that he loves me and that he hopes he will be okay and sometimes he asks me if I feel the same way. I usually respond with a gentle, yet resounding...Hell yes you will be okay!...in fact, you will be better than ever! On this particular night, I simply looked him in the eyes and put my hands on his strong shoulders and told him of all the people who have faith in him and reminded him that there are so many who are deeply invested in his well-being. I tell him of the emails I receive on a daily basis and try to reassure him that not only do most of the people who read this blog believe that he will conquer this...all that have been a part of his life feel the same way as well.
Sometimes it is hard to see John because he is in a place he hasn't been seen before. He requires help with a lot of normal activities of daily living and in the past he has been the rock for so many of us...myself included. He tells me of his gratitude but I also tell him of mine. I believe deeply that if roles were reversed it would be him writing this blog on my behalf and I don't hesitate to remind him when he thanks me for something that he would do the same for me. I'm quite sure that he would have many eccentric stories to tell about me and I have tried to share as much as possible about him as well. The truth is that I never expected to be in a situation with the healthiest, fittest man I know, that we are currently faced with, but I also know that there would be no better candidate to show us just what is possible when it seems that things are impossible. There is little doubt in my mind that John will continue to astound us and all medical professionals who come into contact with him. It's his heart which caused this journey initially but it is also his heart which will help him thrive and amaze us throughout his journey.
Over the weekend, John and Holly were able to attend their church for the first time since John had his heart attack. It was emotional but John seemed to enjoy the service and seeing some familiar faces. Our goal is to continue to slowly introduce him to some of the things he used to be deeply involved with. It is a tightrope walking affair because we have to be cognizant of the fact that he might be overwhelmed or that the stimulation is simply too much. One thing that John has always felt deeply about is his Christianity. Even when John was first at TIRR and we took him downstairs for a prayer service or when his first roomate there, (A pastor) would pray with his family, John was interested and wanted to be involved. Tonight, there was a prayer service at Mentis provided by: In God's hands Ministries, and there were 8 preachers all of whom had a different message. Holly asked him several times if he needed to leave but John wanted to stay. They both received enormous support and love and Holly said she felt so grateful and so blessed that these folks took time out of their schedules to preach at Mentis. Sometimes you can go to church and receive messages but they received messages from those who saw first-hand the love that John and Holly share in a place that most people don't even know about.
Although church is an important aspect in John's life, he also lived his life in a spiritual way. Holly and John have not bought gifts for each other for Christmas for many years instead choosing to sponsor a needy family. Holly's employer, Upchurch Kimbrough, has decided to continue this tradition sponsoring three needy families from John's school. This is an absolute honor and one John would be thrilled with because his school happens to be in an economically challenged area. Holly's co-workers have been supportive since the first morning that this happened. They were in the waiting room with us along with John's co-workers to hear about John for those first few days. They provided constant presence in the waiting room, and since then, they have given Holly the latitude to do her job while providing constant care for John at the same time.
This is a busy time of year for Holly in terms of work so there are many people who have stepped in to buy the gifts for these families and wrap and deliver them and it is an amazing thing to see a great company doing great things for their community. Upchurch Kimbrough is located less than 3 miles from Spring Branch Elementary where these needy families reside and where John works. Although the families were asked for a "Wish list", most of them put that blankets, pots and pans and food were their wishes. They will receive much more than that, and Upchurch Kimbrough and it's employees are to thank for that.
I was recently with John for dinner and it was dark outside. As I told him I was leaving he unlatched his seat belt and stood and told me that he would walk me out to my car because it was dark outside and he wanted to make sure I was okay. This brought a flood of emotions into my heart and made me see that while things are different today than they were last December, John still wants to make sure those around him are safe and happy and he is such a giving soul. It was also the first time that I have been with John since June that he stood on his own without chiding from me or his therapist and there was such reciprocity in our friendship and our commitment to family. John frequently tells me that he loves me and that he hopes he will be okay and sometimes he asks me if I feel the same way. I usually respond with a gentle, yet resounding...Hell yes you will be okay!...in fact, you will be better than ever! On this particular night, I simply looked him in the eyes and put my hands on his strong shoulders and told him of all the people who have faith in him and reminded him that there are so many who are deeply invested in his well-being. I tell him of the emails I receive on a daily basis and try to reassure him that not only do most of the people who read this blog believe that he will conquer this...all that have been a part of his life feel the same way as well.
Sometimes it is hard to see John because he is in a place he hasn't been seen before. He requires help with a lot of normal activities of daily living and in the past he has been the rock for so many of us...myself included. He tells me of his gratitude but I also tell him of mine. I believe deeply that if roles were reversed it would be him writing this blog on my behalf and I don't hesitate to remind him when he thanks me for something that he would do the same for me. I'm quite sure that he would have many eccentric stories to tell about me and I have tried to share as much as possible about him as well. The truth is that I never expected to be in a situation with the healthiest, fittest man I know, that we are currently faced with, but I also know that there would be no better candidate to show us just what is possible when it seems that things are impossible. There is little doubt in my mind that John will continue to astound us and all medical professionals who come into contact with him. It's his heart which caused this journey initially but it is also his heart which will help him thrive and amaze us throughout his journey.
Over the weekend, John and Holly were able to attend their church for the first time since John had his heart attack. It was emotional but John seemed to enjoy the service and seeing some familiar faces. Our goal is to continue to slowly introduce him to some of the things he used to be deeply involved with. It is a tightrope walking affair because we have to be cognizant of the fact that he might be overwhelmed or that the stimulation is simply too much. One thing that John has always felt deeply about is his Christianity. Even when John was first at TIRR and we took him downstairs for a prayer service or when his first roomate there, (A pastor) would pray with his family, John was interested and wanted to be involved. Tonight, there was a prayer service at Mentis provided by: In God's hands Ministries, and there were 8 preachers all of whom had a different message. Holly asked him several times if he needed to leave but John wanted to stay. They both received enormous support and love and Holly said she felt so grateful and so blessed that these folks took time out of their schedules to preach at Mentis. Sometimes you can go to church and receive messages but they received messages from those who saw first-hand the love that John and Holly share in a place that most people don't even know about.
Although church is an important aspect in John's life, he also lived his life in a spiritual way. Holly and John have not bought gifts for each other for Christmas for many years instead choosing to sponsor a needy family. Holly's employer, Upchurch Kimbrough, has decided to continue this tradition sponsoring three needy families from John's school. This is an absolute honor and one John would be thrilled with because his school happens to be in an economically challenged area. Holly's co-workers have been supportive since the first morning that this happened. They were in the waiting room with us along with John's co-workers to hear about John for those first few days. They provided constant presence in the waiting room, and since then, they have given Holly the latitude to do her job while providing constant care for John at the same time.
This is a busy time of year for Holly in terms of work so there are many people who have stepped in to buy the gifts for these families and wrap and deliver them and it is an amazing thing to see a great company doing great things for their community. Upchurch Kimbrough is located less than 3 miles from Spring Branch Elementary where these needy families reside and where John works. Although the families were asked for a "Wish list", most of them put that blankets, pots and pans and food were their wishes. They will receive much more than that, and Upchurch Kimbrough and it's employees are to thank for that.
Sunday, November 29, 2009
Thanksgiving week...
This has been an eventful week for John. He started of the week by being moved to a new "facility". The new place is called Mentis and they work specifically with folks who have brain injuries and/or head trauma. The focus now is to help John regain some more of his life skills and independence.
Since June, John has been to 4 different hospitals and facilities. One of the things that Holly and I both noticed about this move was just how much easier this transition and move was from a logisitical standpoint. When we moved from the hospital to Triumph, it took almost an hour just to disconnect John from all the tubes and wires running into his body and we were so nervous that something would go wrong. Then, in the move from Triumph to TIRR there was huge concern that John wouldn't receive adequate nursing because he was being moved from an acute care setting to one with shared nursing staff.
This recent move was simply a matter of loading John's personal stuff and him into Holly's truck and driving him from TIRR to Mentis. Needless to say, it wasn't lost on us just how far John has come over the past 6 months. There is always trepidation with change because we get comfortable at each place knowing that John is stable but so far we have been very blessed that John has consistently received top-knotch care and we have no reason to believe that this won't continue at Mentis. This is a small facility housing no more than 20 patients and each of them have their own room. Residents are encouraged to help with meal preparation and receive occupational and physical therapy throughout the day. The true focus is to enable residents to be able to live more independently so there is a bit of a pulling back of the constant family presence. While we are still very much involved, John is in the process of regaining who he is as a person and as an individual and he is allowed to do so while under the watchful eye of more objective professionals. This is simply the next step in John's magnificent journey!
On Thanksgiving day, John had a pass to leave Mentis and Holly and he spent the day visiting with family. The above pictures of farm animals are at the FHA barn where John and Holly's niece Sydney is raising a goat...(she named the goat JohnJohn!)
Friday, November 20, 2009
November 19...Raffle update
Softball/Raffle Slideshow
The above is a link to photos from the softball tournament and raffle drawing. Thanks so much to Samuel Karnes for putting the pictures together in such an artistic way!
This is a week which helps us to pause and reflect for things we are thankful for. In the course of my life I have seen generosity and been blessed with amazing friends and family members. I have never experienced the level of generosity or outpouring of support like I have seen for John and Holly. I consistently feel lucky to have John in my life and being able to meet people who work with him or know him is a constant reminder of how he has lived his life and a basis for comparison about what it means to live life with compassion and spirit.
Over the past couple of months, there has been a raffle to benefit and help defer John's medical costs. This raffle was spearheaded by Kate Stohl and the drawing was held today. For those of you who purchased tickets, thank you! Holly asked me to post the following on her behalf:
Mel, please post the following:
~ I AM BEYOND TOUCHED AND NO WORDS CAN EXPRESS HOW GRATEFUL I AM TO EVERYONE. I WISH I COULD THANK EVERYONE PERSONALLY. JUST THE TIME AND EFFORT THAT WENT INTO THE WHOLE EVENT AND HOW ASTOUNDING THE AMOUNT OF MONEY THEY RAISED WAS. I ALSO WANT TO INCLUDE THAT THIS WILL HELP SO MUCH WITH HIS CARE. I AM STILL IN SHOCK AT THE AMOUNT THEY RAISED AND AM SOOO BEYOND GRATEFUL…..
I would like to mention that the amount raised was close to $11,000 dollars! We simply cannot tell you how shocked we are and want each of you to know that this money will go directly toward helping John through his coming months of medical care. We are in awe at how hard each person worked to help out John and Holly and words simply cannot express the level of gratitude in our hearts.
The above is a link to photos from the softball tournament and raffle drawing. Thanks so much to Samuel Karnes for putting the pictures together in such an artistic way!
This is a week which helps us to pause and reflect for things we are thankful for. In the course of my life I have seen generosity and been blessed with amazing friends and family members. I have never experienced the level of generosity or outpouring of support like I have seen for John and Holly. I consistently feel lucky to have John in my life and being able to meet people who work with him or know him is a constant reminder of how he has lived his life and a basis for comparison about what it means to live life with compassion and spirit.
Over the past couple of months, there has been a raffle to benefit and help defer John's medical costs. This raffle was spearheaded by Kate Stohl and the drawing was held today. For those of you who purchased tickets, thank you! Holly asked me to post the following on her behalf:
Mel, please post the following:
~ I AM BEYOND TOUCHED AND NO WORDS CAN EXPRESS HOW GRATEFUL I AM TO EVERYONE. I WISH I COULD THANK EVERYONE PERSONALLY. JUST THE TIME AND EFFORT THAT WENT INTO THE WHOLE EVENT AND HOW ASTOUNDING THE AMOUNT OF MONEY THEY RAISED WAS. I ALSO WANT TO INCLUDE THAT THIS WILL HELP SO MUCH WITH HIS CARE. I AM STILL IN SHOCK AT THE AMOUNT THEY RAISED AND AM SOOO BEYOND GRATEFUL…..
I would like to mention that the amount raised was close to $11,000 dollars! We simply cannot tell you how shocked we are and want each of you to know that this money will go directly toward helping John through his coming months of medical care. We are in awe at how hard each person worked to help out John and Holly and words simply cannot express the level of gratitude in our hearts.
November 17 Softball updates!
John getting updates on tournament progress:
T!
SWING TODD, SWING!!!
Relaxing, dugout style!
Hudd's Red Raiders
The Melonballers:
Simply Maria...
Best cheerleaders ever!
Beth selling raffle tickets...
Todd Oliver and his Dad...Yes, his dad played!
Kate Stohl...raffle chairperson extraordinaire!
Guarding the Brackets!
Holly throwing out the first (and second) pitch!
Tina keeping the field in perfect playing condition!
Yay softball!
On November 7, the Spring Branch Health and Fitness Teachers Association held it's 3rd annual softball tournament. This was a tournament that John had been involved with the planning and organizing of and his fellow teachers really stepped up to continue the tradition even adding a bracket for so that John's friends and family could play. The tournament had a bracket for the more advanced players and another bracket for recreational teams and I can tell you that a fantastic time was had by all involved. I should tell you that if you haven't played softball in a few years, or ever, you should expect to be in pain for several days afterward! Most of our players in the recreational bracket reported needing a few days of recuperation but I want to personally thank everyone who participated. I simply cannot express how much fun the tournament was and we are still talking about what a great day it was. Holly threw out the first (and second) pitch at the Memorial field and later left to go to TIRR to see and update John about the days events. Our hope is that next year John will be able to attend and be an integral part of putting the tourney on once again!
Sometimes in life you do things that you think are going to be fun but there are unexpected turns of events which take it to another level. The day of softball was just such a day. There was a sea of red "coaches crew" t-shirts and the vibe at the field was indescribable. All day, I met folks who know John and heard stories about him and his years of teaching at Spring Branch Elementary. There were people there who have overcome similar hurdles in their lives and some of the stories I have heard make me realize that the human condition and resiliency we are given at birth can help us to overcome most anything thrown our way.
There are so many people to thank for making the tournament possible and I want to mention that each of the organizers put their heart and soul into it and made it a complete success. Samuel Karnes was the first to, "Step up to the plate", and put together teams, brackets and fields and his supporting cast of so many who took time out of their busy schedules to lend a helping hand where needed. We are currently in the process of compiling photos from the day from all three fields and I hope to be able to post some more of them soon but if you would like the complete photo catalog, shoot me an email and I will try to get it to you. If you have some pictures you would like included that you haven't forwarded to Samuel, you can do so by emailing him at: Samuel.Karns@springbranchisd.com
T!
SWING TODD, SWING!!!
Relaxing, dugout style!
Hudd's Red Raiders
The Melonballers:
Simply Maria...
Best cheerleaders ever!
Beth selling raffle tickets...
Todd Oliver and his Dad...Yes, his dad played!
Kate Stohl...raffle chairperson extraordinaire!
Guarding the Brackets!
Holly throwing out the first (and second) pitch!
Tina keeping the field in perfect playing condition!
Yay softball!
On November 7, the Spring Branch Health and Fitness Teachers Association held it's 3rd annual softball tournament. This was a tournament that John had been involved with the planning and organizing of and his fellow teachers really stepped up to continue the tradition even adding a bracket for so that John's friends and family could play. The tournament had a bracket for the more advanced players and another bracket for recreational teams and I can tell you that a fantastic time was had by all involved. I should tell you that if you haven't played softball in a few years, or ever, you should expect to be in pain for several days afterward! Most of our players in the recreational bracket reported needing a few days of recuperation but I want to personally thank everyone who participated. I simply cannot express how much fun the tournament was and we are still talking about what a great day it was. Holly threw out the first (and second) pitch at the Memorial field and later left to go to TIRR to see and update John about the days events. Our hope is that next year John will be able to attend and be an integral part of putting the tourney on once again!
Sometimes in life you do things that you think are going to be fun but there are unexpected turns of events which take it to another level. The day of softball was just such a day. There was a sea of red "coaches crew" t-shirts and the vibe at the field was indescribable. All day, I met folks who know John and heard stories about him and his years of teaching at Spring Branch Elementary. There were people there who have overcome similar hurdles in their lives and some of the stories I have heard make me realize that the human condition and resiliency we are given at birth can help us to overcome most anything thrown our way.
There are so many people to thank for making the tournament possible and I want to mention that each of the organizers put their heart and soul into it and made it a complete success. Samuel Karnes was the first to, "Step up to the plate", and put together teams, brackets and fields and his supporting cast of so many who took time out of their busy schedules to lend a helping hand where needed. We are currently in the process of compiling photos from the day from all three fields and I hope to be able to post some more of them soon but if you would like the complete photo catalog, shoot me an email and I will try to get it to you. If you have some pictures you would like included that you haven't forwarded to Samuel, you can do so by emailing him at: Samuel.Karns@springbranchisd.com
Subscribe to:
Posts (Atom)