One of the big changes that we have noticed recently is the increase in verbal sounds that Kevin is making. It seems to be mostly from the Hyperbaric Oxygen Therapy but many of our daily programs are to help improve this long awaited ability. We are very encouraged when we hear him repeat sounds and when we hear the occasional word, usually only once.
Here are a couple of examples of recent words we have heard:
One Sunday we decided to go for a walk at a local trail after sitting around all afternoon watching football. For some reason, Jon remarked that maybe we would see a bear during our walk. Well as we were walking along, a man and his very large dog were walking towards us. At the same time two other people were walking towards us with two small dogs. As the dogs passed, I remarked that the very big dog did look like a bear. And Kevin immediately began vocalizing many sounds and Jon and I both heard “bbbeeaarr” and “do dogs” (bear and two dogs). It was very exciting especially to have Jon there to witness it as well.
One other day, Kevin and I were finishing lunch and after he finished his last bite he pushed his dish away and said “all done”.
Friday, October 22, 2010
Kevin's New Program (Fall/Winter 2010)
Nutrition Program
As I said before, the digestive issue is one of Kevin’s greatest problems in life right now. I communicated with the Nutritionist regularly during the last six months trying to improve this situation and we continue to work towards solving this problem. One suggestion that she made was to try a liquid diet once a week. This is given to individuals who have multiple food and environmental sensitivities and to help support and strengthen their liver. This will rest and cleanse the digestive system including the liver, helping it to function better in terms of digestion, immune function, and detoxification. Other changes will be made after a stool test is completed and results are received to determine other changes that could be helpful to improve this situation.
Physiological Program
• Passive Deep Breathing Program/Reflex Bags – The purpose of this program is to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
• The Oxygen Enhancement Program/Carbogen Therapy (95% Oxygen and 5% Carbon Dioxide) - The purpose of this program is to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
• The Mild Hyperbaric Therapy Program – To increase partial pressure which increases oxygen uptake in the brain and body, improving overall brain and body function.
“Simply defined, hyperbaric oxygen therapy is a medical treatment that uses pure oxygen at increased ambient pressure to speed and enhance the body’s natural ability to heal. In cases of cerebral palsy and brain traumas, the brain tissue is revived and can assist the child in restoring those functions that have been lost or compromised. It is interesting to note that the recovery of the child’s motor and intellectual functions often continues long after the treatments have ended. The brain cells that have been dormant need to re-learn (or, perhaps, learn for the first time) the functions for which they are responsible.” (Richard Neubauer)
We have noticed remarkable changes in Kevin since receiving the Hyperbaric Oxygen Chamber in July. We call this “the spaceship” because it is a huge (7 feet long) white enclosure that looks similar to a rocket or spaceship. I even made it comfy cozy inside for Kevin with spaceship bedding. (Check out photos of “the spaceship” on our blog.) The most noticeable change in Kevin since beginning HBOT in July was the increase in his verbal sounds. The quality and quantity has increased significantly. There have been several examples of hearing words (one time). Kevin loves to go into the spaceship. Generally he goes in daily after lunch for about two hours. He can take a nap in it or just occupy himself with some books. When Grandma is here once a week, she will usually go in the chamber with Kevin and read to him. When Grandee visits she also enjoys spending time with Kevin inside the chamber. But he certainly does not mind going in by himself, in fact, one time our power was out and he was not able to go in for his session at his normal time after lunch and he was very upset about that. Jon and I have also benefitted from this new addition to our home.
Intellectual Program
This program was particularly challenging the last six months. Initially we were to begin with using simple picture cards and have Kevin point to the correct picture consistently. We never progressed from this point. I became very frustrated when Kevin would consistently point to the picture card that was closest to his right hand, not even considering it seems the correct answer. I was given some helpful advice on how to move forward on this task and get Kevin to respond correctly. It is unquestionable that Kevin knows the pictures but our goal is for Kevin to give clear feedback on what he does know.
Social/Emotional Program
Developing Self and Self Control – our goal is to get Kevin to imitate, interact, experiment, and play purposefully; and also to accept boundaries for acceptable behavior. Kevin made a lot of progress in this area in the last six months. The simple act of holding Kevin by the hand/wrist/arm to give him boundary has improved his behavior greatly. It is still something we are working on but we are having much more success. Because his brain is unorganized a boundary is a way to help bring him back and keep him on task.
To our visit we brought a video of several daily tasks and situations that occur at home. I am very proud of some of the routine activities that Kevin participates in around the house. For instance, loading the silverware in the dishwasher and closing the door, turning on and off the lights appropriately, shutting doors, etc. I was given some very helpful feedback as well as very encouraging affirmations that my own actions as a parent were confident and clear and appropriate…which every mother is relieved to hear…that I am doing it right.
Sensory Program
• Olfactory & Gustatory Integration Program – Presenting smells and tastes
• Auditory Training – To be comfortable in noisy situations, to not be upset by sounds and to not be easily distracted; To hear sounds at the appropriate volume; To hear all sounds well in daily life and speech. This is one of Kevin (and mine) favorite programs. When Kevin completed his morning program and completed it in a timely manner he was rewarded with this program. He loves to listen to his headphones. I was apprehensive about whether or not he would actually wear the headphones on his head but he doesn’t mind at all, and looks forward to listening to his EASE music and snuggling with his Mom on couch.
• Sensation Level 3 – Create the ability to feel pleasurable and un-pleasurable sensations in the appropriate length of time consistently all over the body. Using Proprioception for Kevin to become more aware of his body, specifically through his left hand, and using joint compressions on his left hand.
Physical Program
This six month period was bit challenging to us because we had to return to crawling and creeping indoors during the spring and summer months. Finding motivation to accomplish this was even more difficult at times. Initially is was not difficult to get Kevin to do this activity, especially when he played hide and seek with Grandma, our neighbor Karen, and other friends but over time as the distance increased weekly it became more and more challenging. Eventually when we were one week from our goal Kevin shut down. He became very apathetic about everything, he was not smiling or happy, he was not eating well, his sleeping during the day significantly increased despite the lack of physical activity he was accomplishing. When I communicated this to the FHC, we were told to stop all physical programming for a week and then start back up again. We never reached our crawling and creeping goal but did get a fair amount accomplished each day. I was relieved to hear that some of the improvements that Kevin made in the last six months were due to the crawling and creeping (even though we did not reach our goal). Some of these changes were his ability to visually bring his eyes together and track upwards on an object; improvement in depth perception; and improvement in ability to filter sounds and stay on task; and improvement in understanding; improvement in creating many different sounds. All of these are activities are learned in the midbrain which crawling and creeping directly affect. His crawling and creeping technique began to improve as well. Six months ago, Kevin was not able to use his toes during belly crawling and now he is able to with both the right and left toes, still needing help occasionally but definitely an improvement.
I was not expecting our physical program to change much at all considering we had not met our crawling and creeping goals. But I was happy to learn that our crawling and creeping distance has decreased significantly and very happy to learn that we have added walking again to our program.
• Crawling – helps develop the pons in the brain to help control face & tongue, focus & concentration, feet & hips, and visual tracking; 200 meters a day (ideal 300 meters)
• Creeping – helps the midbrain with convergence of vision, understanding, and coordination; 400 meters a day
• Walking – begin with ¼ mile and increase ¼ mile every two weeks until 1 mile with a goal of 42 minutes.
• Reflex Integration Program – To support the organization of the Medulla Oblongata and to pattern and integrate pathological and dysfunctional reflexes into higher level brain stages. Out of the 22 Reflexes we have 13 to work on.
As I said before, the digestive issue is one of Kevin’s greatest problems in life right now. I communicated with the Nutritionist regularly during the last six months trying to improve this situation and we continue to work towards solving this problem. One suggestion that she made was to try a liquid diet once a week. This is given to individuals who have multiple food and environmental sensitivities and to help support and strengthen their liver. This will rest and cleanse the digestive system including the liver, helping it to function better in terms of digestion, immune function, and detoxification. Other changes will be made after a stool test is completed and results are received to determine other changes that could be helpful to improve this situation.
Physiological Program
• Passive Deep Breathing Program/Reflex Bags – The purpose of this program is to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
• The Oxygen Enhancement Program/Carbogen Therapy (95% Oxygen and 5% Carbon Dioxide) - The purpose of this program is to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
• The Mild Hyperbaric Therapy Program – To increase partial pressure which increases oxygen uptake in the brain and body, improving overall brain and body function.
“Simply defined, hyperbaric oxygen therapy is a medical treatment that uses pure oxygen at increased ambient pressure to speed and enhance the body’s natural ability to heal. In cases of cerebral palsy and brain traumas, the brain tissue is revived and can assist the child in restoring those functions that have been lost or compromised. It is interesting to note that the recovery of the child’s motor and intellectual functions often continues long after the treatments have ended. The brain cells that have been dormant need to re-learn (or, perhaps, learn for the first time) the functions for which they are responsible.” (Richard Neubauer)
We have noticed remarkable changes in Kevin since receiving the Hyperbaric Oxygen Chamber in July. We call this “the spaceship” because it is a huge (7 feet long) white enclosure that looks similar to a rocket or spaceship. I even made it comfy cozy inside for Kevin with spaceship bedding. (Check out photos of “the spaceship” on our blog.) The most noticeable change in Kevin since beginning HBOT in July was the increase in his verbal sounds. The quality and quantity has increased significantly. There have been several examples of hearing words (one time). Kevin loves to go into the spaceship. Generally he goes in daily after lunch for about two hours. He can take a nap in it or just occupy himself with some books. When Grandma is here once a week, she will usually go in the chamber with Kevin and read to him. When Grandee visits she also enjoys spending time with Kevin inside the chamber. But he certainly does not mind going in by himself, in fact, one time our power was out and he was not able to go in for his session at his normal time after lunch and he was very upset about that. Jon and I have also benefitted from this new addition to our home.
Intellectual Program
This program was particularly challenging the last six months. Initially we were to begin with using simple picture cards and have Kevin point to the correct picture consistently. We never progressed from this point. I became very frustrated when Kevin would consistently point to the picture card that was closest to his right hand, not even considering it seems the correct answer. I was given some helpful advice on how to move forward on this task and get Kevin to respond correctly. It is unquestionable that Kevin knows the pictures but our goal is for Kevin to give clear feedback on what he does know.
Social/Emotional Program
Developing Self and Self Control – our goal is to get Kevin to imitate, interact, experiment, and play purposefully; and also to accept boundaries for acceptable behavior. Kevin made a lot of progress in this area in the last six months. The simple act of holding Kevin by the hand/wrist/arm to give him boundary has improved his behavior greatly. It is still something we are working on but we are having much more success. Because his brain is unorganized a boundary is a way to help bring him back and keep him on task.
To our visit we brought a video of several daily tasks and situations that occur at home. I am very proud of some of the routine activities that Kevin participates in around the house. For instance, loading the silverware in the dishwasher and closing the door, turning on and off the lights appropriately, shutting doors, etc. I was given some very helpful feedback as well as very encouraging affirmations that my own actions as a parent were confident and clear and appropriate…which every mother is relieved to hear…that I am doing it right.
Sensory Program
• Olfactory & Gustatory Integration Program – Presenting smells and tastes
• Auditory Training – To be comfortable in noisy situations, to not be upset by sounds and to not be easily distracted; To hear sounds at the appropriate volume; To hear all sounds well in daily life and speech. This is one of Kevin (and mine) favorite programs. When Kevin completed his morning program and completed it in a timely manner he was rewarded with this program. He loves to listen to his headphones. I was apprehensive about whether or not he would actually wear the headphones on his head but he doesn’t mind at all, and looks forward to listening to his EASE music and snuggling with his Mom on couch.
• Sensation Level 3 – Create the ability to feel pleasurable and un-pleasurable sensations in the appropriate length of time consistently all over the body. Using Proprioception for Kevin to become more aware of his body, specifically through his left hand, and using joint compressions on his left hand.
Physical Program
This six month period was bit challenging to us because we had to return to crawling and creeping indoors during the spring and summer months. Finding motivation to accomplish this was even more difficult at times. Initially is was not difficult to get Kevin to do this activity, especially when he played hide and seek with Grandma, our neighbor Karen, and other friends but over time as the distance increased weekly it became more and more challenging. Eventually when we were one week from our goal Kevin shut down. He became very apathetic about everything, he was not smiling or happy, he was not eating well, his sleeping during the day significantly increased despite the lack of physical activity he was accomplishing. When I communicated this to the FHC, we were told to stop all physical programming for a week and then start back up again. We never reached our crawling and creeping goal but did get a fair amount accomplished each day. I was relieved to hear that some of the improvements that Kevin made in the last six months were due to the crawling and creeping (even though we did not reach our goal). Some of these changes were his ability to visually bring his eyes together and track upwards on an object; improvement in depth perception; and improvement in ability to filter sounds and stay on task; and improvement in understanding; improvement in creating many different sounds. All of these are activities are learned in the midbrain which crawling and creeping directly affect. His crawling and creeping technique began to improve as well. Six months ago, Kevin was not able to use his toes during belly crawling and now he is able to with both the right and left toes, still needing help occasionally but definitely an improvement.
I was not expecting our physical program to change much at all considering we had not met our crawling and creeping goals. But I was happy to learn that our crawling and creeping distance has decreased significantly and very happy to learn that we have added walking again to our program.
• Crawling – helps develop the pons in the brain to help control face & tongue, focus & concentration, feet & hips, and visual tracking; 200 meters a day (ideal 300 meters)
• Creeping – helps the midbrain with convergence of vision, understanding, and coordination; 400 meters a day
• Walking – begin with ¼ mile and increase ¼ mile every two weeks until 1 mile with a goal of 42 minutes.
• Reflex Integration Program – To support the organization of the Medulla Oblongata and to pattern and integrate pathological and dysfunctional reflexes into higher level brain stages. Out of the 22 Reflexes we have 13 to work on.
Allergy Clearing at FHC (October 18 - 20)
Kevin still struggles greatly with digestive issues and his numerous allergy sensitivities. Despite all the efforts we have taken to solve this major problem nothing seems to eliminate the problem. Matthew Newell the Director of FHC offered to do a three-day allergy clearing on him that is an energy-based treatment. This is something we have been open to in the past and have experienced it with a couple different people, but have seen inconclusive results. But since it was included in our visit – why not!
On the first day, Matthew tested Kevin for 600 items (food, environmental, etc) and 121 items came up as allergens to Kevin. Matthew performed the energy-clearing. On the second day those same 121 items were tested and only 31 items remained as allergens. Another clearing was performed. On the third day 12 items remained (eggs, sugars, vegetables, tree mix, peanuts, strawberry, etc.) and a final clearing.
As I said, we have had some experience with similar treatments so we were not totally surprised by the way the energy treatment was executed. There was no denying that despite the fact that Matthew’s hands were not even directly on Kevin at times, and the fact that he only needed the item name written on paper, there were changes taking place in Kevin, most noticeably his left ear turning bright red during treatment.
During the allergy clearings Kevin was to eat only white rice and distilled water. I was a little apprehensive about this, especially while traveling and wanting Kevin to be happy and comfortable. But he didn’t complain about eating the rice and he was very compliant the entire time during our visit despite the lack of food and sleep. He would sit very nicely in the chair during our individual visits with each department (medical doctor, educational, physical, etc) and it was commented on several times how pleasant he was.
Jon’s parents attended this visit with us and this was their first time witnessing an energy treatment. And I was touched by the comment that Jon’s Dad said, ”I’m not sure what I think of all this energy stuff, but because I have someone invested in it (putting his hand on Kevin), it’s worth a try.”
After Kevin’s last clearing on Wednesday, we immediately left Philadelphia to make our journey home. Not more than an hour after the clearing Kevin became very upset and uncomfortable. He was crying and twisting about in his car seat. We thought that he was probably trying to go to the bathroom, but instead he began vomiting. We were not surprised that this happened because it is probably a way for his body to rid itself of toxins. We were able to stop soon afterwards and all seemed fine again. But when we started on our way again he began crying and twisting around again in his car seat. I climbed in the backseat with him but was unable to comfort him. He would reach out to me only to hit or scratch me. He vomited again. He would also yawn repeatedly but seemed to be so worked up that it was impossible for him to sleep. We finally stopped again, I pulled him out of his car seat and he almost immediately fell asleep in my arms (without any hitting or scratching). We let him sleep for about 30 minutes and then made movements to start on our way again. I actually just put him in the seat belt on the backseat with me because I was afraid he would start screaming again. As we started on our way, he began laughing and acting very happy and his normal self (he loves to ride in car). When Jon saw that I was not smiling, he asked why I wasn’t happy now that Kevin was, I said I felt snookered. So I moved Kevin into his car seat with no resistance and then everybody was happy. Kevin didn’t’ fall asleep again until about 9:00 pm for the last hour of our journey. And we all returned home safe and sound.
I have a lot of respect for Matthew Newell. Not only does he have the expert education and experience from his many years working with Glenn Doman at The Institutes but he is also is very knowledgeable in energy treatments that will also benefit and help heal our hurt kids.
On the first day, Matthew tested Kevin for 600 items (food, environmental, etc) and 121 items came up as allergens to Kevin. Matthew performed the energy-clearing. On the second day those same 121 items were tested and only 31 items remained as allergens. Another clearing was performed. On the third day 12 items remained (eggs, sugars, vegetables, tree mix, peanuts, strawberry, etc.) and a final clearing.
As I said, we have had some experience with similar treatments so we were not totally surprised by the way the energy treatment was executed. There was no denying that despite the fact that Matthew’s hands were not even directly on Kevin at times, and the fact that he only needed the item name written on paper, there were changes taking place in Kevin, most noticeably his left ear turning bright red during treatment.
During the allergy clearings Kevin was to eat only white rice and distilled water. I was a little apprehensive about this, especially while traveling and wanting Kevin to be happy and comfortable. But he didn’t complain about eating the rice and he was very compliant the entire time during our visit despite the lack of food and sleep. He would sit very nicely in the chair during our individual visits with each department (medical doctor, educational, physical, etc) and it was commented on several times how pleasant he was.
Jon’s parents attended this visit with us and this was their first time witnessing an energy treatment. And I was touched by the comment that Jon’s Dad said, ”I’m not sure what I think of all this energy stuff, but because I have someone invested in it (putting his hand on Kevin), it’s worth a try.”
After Kevin’s last clearing on Wednesday, we immediately left Philadelphia to make our journey home. Not more than an hour after the clearing Kevin became very upset and uncomfortable. He was crying and twisting about in his car seat. We thought that he was probably trying to go to the bathroom, but instead he began vomiting. We were not surprised that this happened because it is probably a way for his body to rid itself of toxins. We were able to stop soon afterwards and all seemed fine again. But when we started on our way again he began crying and twisting around again in his car seat. I climbed in the backseat with him but was unable to comfort him. He would reach out to me only to hit or scratch me. He vomited again. He would also yawn repeatedly but seemed to be so worked up that it was impossible for him to sleep. We finally stopped again, I pulled him out of his car seat and he almost immediately fell asleep in my arms (without any hitting or scratching). We let him sleep for about 30 minutes and then made movements to start on our way again. I actually just put him in the seat belt on the backseat with me because I was afraid he would start screaming again. As we started on our way, he began laughing and acting very happy and his normal self (he loves to ride in car). When Jon saw that I was not smiling, he asked why I wasn’t happy now that Kevin was, I said I felt snookered. So I moved Kevin into his car seat with no resistance and then everybody was happy. Kevin didn’t’ fall asleep again until about 9:00 pm for the last hour of our journey. And we all returned home safe and sound.
I have a lot of respect for Matthew Newell. Not only does he have the expert education and experience from his many years working with Glenn Doman at The Institutes but he is also is very knowledgeable in energy treatments that will also benefit and help heal our hurt kids.
Kevin's FHC Evaluation (October 18 & 19)
Kevin is chronologically 72.5 months old (6 years old) and based on the Integrative and Developmental Progression Chart his neurological age is now at 19.6 months. Compared to his first FHC visit six months ago, his neurological growth rate is 115% faster this period. His degree of injury is still severe and extensive in the bilateral brainstem, limbic, and cortex area of the brain.
Integrative & Developmental Progression Chart Changes
Seeing & Reading – Displays a fast pupil contraction reflex in both eyes
Sensation & Tactility – Partially Achieved: Feel and identify an object by its physical characteristics (hard, soft, round, flat) with each hand
Manual & Writing – Partially Achieved: Use both hands together, cortically opposing the thumb and finger; build structures using blocks; begin basic dressing and undressing
Emotional & Social – Nearly Achieved: Enjoys playing interactive games; miss parents/ objects when moved out of sight; start to imitate behavior; assert position/begin to test boundaries; experiment with a variety of objects; transition smoothly from one situation to another
Kevin received his second Craniosacral Fascial Therapy session. During our last visit, Kevin’s brain was not breathing at all which is typical for brain-injured kids. The brain expands and contracts in a rhythm, the bigger the expansion the better, 120 being ideal. Kevin’s brain was breathing at about 100 during this visit. So the necessary fluids are traveling effectively through his spinal cord and central nervous system.
We also met with the medical doctor/homeopathic who made some adjustments to his current remedies to help Kevin with continued wellness.
The foot doctor recommended a new pair of orthotic inserts for Kevin’s shoes, now that he is not “toe walking”.
Integrative & Developmental Progression Chart Changes
Seeing & Reading – Displays a fast pupil contraction reflex in both eyes
Sensation & Tactility – Partially Achieved: Feel and identify an object by its physical characteristics (hard, soft, round, flat) with each hand
Manual & Writing – Partially Achieved: Use both hands together, cortically opposing the thumb and finger; build structures using blocks; begin basic dressing and undressing
Emotional & Social – Nearly Achieved: Enjoys playing interactive games; miss parents/ objects when moved out of sight; start to imitate behavior; assert position/begin to test boundaries; experiment with a variety of objects; transition smoothly from one situation to another
Kevin received his second Craniosacral Fascial Therapy session. During our last visit, Kevin’s brain was not breathing at all which is typical for brain-injured kids. The brain expands and contracts in a rhythm, the bigger the expansion the better, 120 being ideal. Kevin’s brain was breathing at about 100 during this visit. So the necessary fluids are traveling effectively through his spinal cord and central nervous system.
We also met with the medical doctor/homeopathic who made some adjustments to his current remedies to help Kevin with continued wellness.
The foot doctor recommended a new pair of orthotic inserts for Kevin’s shoes, now that he is not “toe walking”.
Kevin's FHC Revisit (October 18 & 19)
We have just returned from our second visit with the Family Hope Center (FHC) in Philadelphia. They recently relocated to a new building that is much larger than their previous home. We were very impressed by how spacious and clean it was. We enjoyed the nice bright colors that they used to decorate with and were especially delighted with the new wall murals. Kevin took a particular interest in the fish tank that is featured in the lobby area.
I found our two-day visit at FHC to be very uplifting. I feel much less stress during our visit at FHC compared with visits we have had at The Institutes, partially because our visit is not an entire week where I need to keep Kevin rested and happy. Having been on a program for the last four years, we feel very blessed that we have been able to faithfully return every six months for Kevin’s evaluations and updated treatment programs. But what I find just as important is the affirmation that we receive while we are there knowing that we are with the best people to help our son continue to make progress. Our visits really motivate us to keep the program going. It can even help bring us back into focus about what are goals are with Kevin. When preparing for our revisit at FHC, I was feeling like maybe it would not be worth returning just yet because we had not met our program goals and I did not feel there were many noticeable changes in Kevin‘s progression. But of course all those small changes are exactly the changes we need to keep Kevin progressing. The staff was able to see and remind us of changes that had taken place that we had not remembered due to being with Kevin on a daily basis. For instance, six months ago he was “toe walking”.
Over the last six months Kevin seems happier. He enjoys laughing along with others and tickling Mom to make her laugh. We have noticed that Kevin seems to be more aware of the world around him. He is making more sounds and he seems to be more intent on communicating. At times we hear a word, usually only once, although we are certain many times it is just a matter of our inability to be able to decipher the words/sounds that are coming out of his mouth. He also wants to do more on his own if he is able to do it, like feeding himself and walking up steps by himself and even problem solving. For instance when the hand rail is on the left side of a stairway and he needs his right hand on the rail to go up the steps he will walk up backwards to be able to use the assistance of his right hand on the rail. Overall he is much more pleasant and cooperative.
Probably the best thing that happened to us in the last six months was taking a full day off of program on Sundays to spend together as a family and not feeling guilty to take a couple days off here and there for visits with family and friends. We even divulged in a monthly date night for Jon and I with an occasional overnight for Kevin at the Grandparents. I have also learned to take some time for myself and picked up a beloved old hobby of reading for pleasure. In the past I felt like if I had any time to read I should be reading some kind of self help book for Kevin, now I have a wide variety of books that I have been reading very regularly, and this makes me happy.
I found our two-day visit at FHC to be very uplifting. I feel much less stress during our visit at FHC compared with visits we have had at The Institutes, partially because our visit is not an entire week where I need to keep Kevin rested and happy. Having been on a program for the last four years, we feel very blessed that we have been able to faithfully return every six months for Kevin’s evaluations and updated treatment programs. But what I find just as important is the affirmation that we receive while we are there knowing that we are with the best people to help our son continue to make progress. Our visits really motivate us to keep the program going. It can even help bring us back into focus about what are goals are with Kevin. When preparing for our revisit at FHC, I was feeling like maybe it would not be worth returning just yet because we had not met our program goals and I did not feel there were many noticeable changes in Kevin‘s progression. But of course all those small changes are exactly the changes we need to keep Kevin progressing. The staff was able to see and remind us of changes that had taken place that we had not remembered due to being with Kevin on a daily basis. For instance, six months ago he was “toe walking”.
Over the last six months Kevin seems happier. He enjoys laughing along with others and tickling Mom to make her laugh. We have noticed that Kevin seems to be more aware of the world around him. He is making more sounds and he seems to be more intent on communicating. At times we hear a word, usually only once, although we are certain many times it is just a matter of our inability to be able to decipher the words/sounds that are coming out of his mouth. He also wants to do more on his own if he is able to do it, like feeding himself and walking up steps by himself and even problem solving. For instance when the hand rail is on the left side of a stairway and he needs his right hand on the rail to go up the steps he will walk up backwards to be able to use the assistance of his right hand on the rail. Overall he is much more pleasant and cooperative.
Probably the best thing that happened to us in the last six months was taking a full day off of program on Sundays to spend together as a family and not feeling guilty to take a couple days off here and there for visits with family and friends. We even divulged in a monthly date night for Jon and I with an occasional overnight for Kevin at the Grandparents. I have also learned to take some time for myself and picked up a beloved old hobby of reading for pleasure. In the past I felt like if I had any time to read I should be reading some kind of self help book for Kevin, now I have a wide variety of books that I have been reading very regularly, and this makes me happy.
The last six months were a bit of a roller coaster with some weeks noticeably better than others. Another big change in our lives was missing our daily visits from our many supportive friends (volunteers). We did however receive weekly visits from Grandma to help with the program and Kevin’s beloved morning visits from our good neighbor Karen who assisted us with the one reflex that requires three people. We feel uplifted and motivated after our FHC visit and we are looking forward to implementing the new changes to our program.
Hyperbaric Oxygen Chamber ("The SpaceShip")
“Simply defined, hyperbaric oxygen therapy is a medical treatment that uses pure oxygen at increased ambient pressure to speed and enhance the body’s natural ability to heal. In cases of cerebral palsy and brain traumas, the brain tissue is revived and can assist the child in restoring those functions that have been lost or compromised. It is interesting to note that the recovery of the child’s motor and intellectual functions often continues long after the treatments have ended. The brain cells that have been dormant need to re-learn (or, perhaps, learn for the first time) the functions for which they are responsible.” (Richard Neubauer)
We have noticed remarkable changes in Kevin since receiving the Hyperbaric Oxygen Chamber in July. We call this “the spaceship” because it is a huge (7 feet long) white enclosure that looks similar to a rocket or spaceship. I even made it comfy cozy inside for Kevin with spaceship bedding. The most noticeable change in Kevin since beginning HBOT in July was the increase in his verbal sounds. The quality and quantity has increased significantly. There have been several examples of hearing words (one time). Kevin loves to go into the spaceship. Generally he goes in daily after lunch for about two hours. He can take a nap in it or just occupy himself with some books. When Grandma is here once a week, she will usually go in the chamber with Kevin and read to him. When Grandee visits she also enjoys spending time with Kevin inside the chamber. But he certainly does not mind going in by himself, in fact, one time our power was out and he was not able to go in for his session at his normal time after lunch and he was very upset about that. Jon and I have also benefitted from this new addition to our home.
We have noticed remarkable changes in Kevin since receiving the Hyperbaric Oxygen Chamber in July. We call this “the spaceship” because it is a huge (7 feet long) white enclosure that looks similar to a rocket or spaceship. I even made it comfy cozy inside for Kevin with spaceship bedding. The most noticeable change in Kevin since beginning HBOT in July was the increase in his verbal sounds. The quality and quantity has increased significantly. There have been several examples of hearing words (one time). Kevin loves to go into the spaceship. Generally he goes in daily after lunch for about two hours. He can take a nap in it or just occupy himself with some books. When Grandma is here once a week, she will usually go in the chamber with Kevin and read to him. When Grandee visits she also enjoys spending time with Kevin inside the chamber. But he certainly does not mind going in by himself, in fact, one time our power was out and he was not able to go in for his session at his normal time after lunch and he was very upset about that. Jon and I have also benefitted from this new addition to our home.
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Steeler Fans
Jon & Karen were thrilled to have the opportunity to go to our first Steelers game in Pittsburgh.
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The Farm
This summer we participated in a CSA (Community Supported Agriculture) or co-op. It is a great way to support your local farms and get fresh vegetables throughout the summer. Once a week we would go to our farm and pick up our vegetables. This proved to be an excellent reward for Kevin at the end of a productive day. He would even help put the veggies in the bag. Before we would leave the farm he could have the opportunity to feed the chickens walking around. http://www.localharvest.org/
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Watching Sledriding Video
Between crawling and creeping sessions Kevin has various rewards that he can choose from. One of his favorites is looking at photographs and videos, especially on our blog. Here is a video of him watching a video of himself sledriding. I just had to capture his contagious laugh.
Riding in the Car Video
Kevin loves to ride in the car. We can use this as a reward at the end of a successful day of crawling and creeping. Here is a video of Kevin as we get on the highway to go to Grandee & Pap's house.
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Spring/Summer 2010 Program
To increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
1. Passive Deep Breathing with Reflex Bags
2. Oxygen Enhancement with Carbogen Therapy (95% O2 & 5% CO2)
To support the organization of the Medulla Oblongata; To pattern and integrate pathological & dysfunctional reflexes into higher level brain stages.
Reflex Integration
To organize the lower levels of the brain in particular the Pons and Midbrain. It is also an important program to develop visual tracking, convergence, organization, focus, language, establish dominance, and improve breathing.
1. Crawling - 200 meters a day
2. Creeping - 1200 meters a day
Language & Learning
To be comfortable in noisy situations; To not be upset by sounds; To not be easily distracted; To hear sounds at the appropriate volume; To hear all sounds well in daily life and speech
Auditory Training with EASE music
FHC Families
We are so fortunate to have our own little Family Hope Center (FHC) Support Group here in North East Ohio. Currently there are four families that have been to FHC and programming. It really is great to have local friends to support each other and share helpful programming tips. Our biggest challenge is finding and making the time to get together.
SomaEnergetics with Tara
SomaEnergetics (Soma meaning "body" in the original Greek) is a powerful series of Sound Therapies that utilize tuning forks tuned to the frequencies of the Ancient Solfeggio. These amazing therapies release blockages in the energy bodies, and thus assists one with connecting with Source. www.somaenergetics.com
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