A little over a year ago we signed Silas up for his very first Napa intensive. We had planned to go to California, but when we heard that a Napa pop-up was coming to Boston we jumped right on it! Being able to experience this, but not having to put Silas through the long plane ride and 3 weeks without seeing Dada was a much better scenario in our books...not to mention the money we will be saving on travel and lodging, bonus! We first heard about Napa a few years ago when many of our HIE friends were jumping into the intensive therapy world. I was always curious if Silas might benefit from this program, but I didn't feel like we were ready to commit to two different intensive programs. We were doing two MNRI intensives a year at the time and we felt like that was what we needed to commit ourselves to. Now that he's six years old (five at the time when we applied for Napa) we feel like Silas has come so far and would really benefit from a therapy program like Napa. We will still do our one MNRI intensive each year and then focus on some other programs like Napa and Project Walk.
At Napa Silas will be doing one hour of CME and two hours of Neurosuit therapy everyday, Monday through Friday for three weeks. CME, which stands for Cuevas Medek Exercises, is a therapy created by a Chilean Kinesiologist named Ramon Cuevas. The therapy program involves over 3,000 different exercises which each create a different biomechanics challenge for the child. Because a lot of the exercises use gravity as their main component with the child, some of the moves can only be done if they are under a certain height and weight, for safety reasons. When we applied over a year ago Silas was 10 pounds lighter, so now that he is heavier, his CME exercises are more limited. There are still many he can do, since there are over 3,000 within the program, but some of the moves cannot be done on Silas since he is now so tall and heavy. His therapist is adapting the CME program really well to meet his needs despite how big he's gotten and getting creative with him! For neurosuit therapy they wear a special suit that has multiple components. It has a vest, a pair of shorts, knee pads and bungees. There are dozens of small hooks sewn into the suit where the bungees attach and allow for the therapist to place them to assist with proper alignment of the body from the outside. The bungees attach as well onto their shoes. The suit also provides the child with compression to their joints which creates more body awareness for them while sending messages to their central nervous system. And of course with increased body awareness, the child will show improvements in motor planning. The suit allows them to build muscle at a faster pace, so when the child is in it they are working their bodies extra hard which makes the therapy more successful and will help them carry the skills they've learned with the suit on into their daily lives out of therapy and out of the suit. I am very excited to see how both of these therapies combined will help Silas make gains in his developmental progress and in turn help with his behavioral and cognitive progress. We have found that every time Silas develops a new gross motor skill, his cognitive functions also improve. He is so proud of himself when he reaches his goals made for him in therapy. As many of you that follow us know, we have been doing intensive therapy for Silas since he was 18 months old. We wish we would have found it sooner, I truly believe he would be so much further along if we had known about them soon after his birth injury. I am glad that we found it when we did though, and still we started our intensives earlier than most have gotten to. I am also glad we started with MNRI, and chose to branch out to other therapy modules later in his life. I think MNRI provides a really good foundation for children to succeed in other therapies. Reflex integration is so important for everyone, but even more so for those with neurological impairments. So when we decided we were finally ready to make the jump into adding Napa into our outside therapy schedule, I was hesitant but excited to see how it would mesh with our other programs. After experiencing just a couple days of their program I do see a lot of similarities with MNRI. Similar thought processes, and allowing the body to guide them rather then forcing their bodies into positions they are not ready to be in like more traditional therapies often do. I think if you are new to the therapy world, and brain injury or other neurological conditions that require your child to be in therapy, either of these programs would greatly help your child to make gains and progress, but I am so grateful for how we approached our journey. I strongly believe as well that children with such severe injuries like Silas will not make big gains with just traditional therapies, like those offered in his school setting. 30 minutes, three times a week of traditional PT, OT, Speech is not going to help them like these intensive programs do. Their injuries are just too severe, and require so much more attention than what school services can offer. Thats why we have always done intensive therapies with Silas. I am so glad we have the support from the community, grant programs, and foundations to be able to financially attend. I know this life and how we approach Silas' care is just not realistic for most families with children like Silas because all of these programs are typically out of pocket and not covered by insurance. It's amazing how much is out there, from intensive therapies, to stem cells, to robotic gait training, from acupuncture to hyperbaric oxygen diving, to alternative surgeries. If only we could all experience every single one of these, to pick and choose what you think might help your child most, and to have a wishlist like families like us do, is just devastating in general, especially when we can't afford to give our children everything possible that is out there that could help them. So much for daydreaming, we are just SO THANKFUL to be adding Napa to our list of wishes that we ARE able to achieve!
I will try to keep everyone in the loop daily to show Silas' progress and what they are working on with him. I will try to explain to the best of my ability what these programs are doing to help him (as I learn as well) in hopes that we can help other families decide if this would help their children. We are learning as we go, and by the end of the therapy intensive we will have a program to follow through at home. Realistically I wanted to write a blog daily to explain what he did that day, but...LIFE. Life gets in the way...so on day five of our intensive I am just now finding the time to blog and catch everyone up on how Napa is!
So far our favorite is definitely CME. He's doing things with his body that I didn't know he was capable of. I feel confident that this therapy modality will really help him to make gains in understanding what his body is capable of. Creating body awareness, and I'm hoping it will help him to understand how to help protect himself when falling and understand how to move his body more appropriately. He uses his extensor tone and "fake strength" a lot from his spasticity, and throws himself backwards and to the side and is very unsafe (a lot of times during his temper tantrums and behavioral outbursts) but I really hope to see him develop safer ways to move his body. There is a huge difference in his "fake strength" from spasticity and from actual strength from his muscles. I didn't know he was so strong, but seeing him stand up from a full squatting position only using his muscles and not from hyper extension is so cool to see! I also can't wait to see the difference in his core strength from Day 1 to Day 13. I again feel like he has more core strength than I knew he had. It will be interesting to see if his sitting pattern will change. Right now when Silas sits he is on his tailbone rather than his "sit" bone. And he has a very rounded back (kyphosis). I am so curious to see how CME will help him with his posture in sitting.
The Neurosuit therapy is also very cool! I can tell instantly that his body comes into proper alignment when wearing it. When he lays down he postures into a slight "C" shape. He has a 10% scoliosis, but it is postural and not fixed, which is a good thing. I could tell right away that the neurosuit was going to help because after getting all the bungees on, his body was straight rather than curved into that slight "C" shape. He doesn't mind the suit at all, and is actually really fascinated with the bungee cords when he looks at his legs. The suit helps to provide him with the input his body needs, especially in all the different positions they are putting him in, like sitting. He is able to sit in a much better posture with less kyphosis, and the idea is that this should help train his muscles to sit the same that he does in the suit, outside of the suit. The suit is also supposed to help with motor planning. He has been working on a lot of crawling in the suit, and really doing well with shifting his weight and figuring out how to move his arms and legs at the right moments to propel himself forward. I can already see some improvement, because he is non-stop rolling over onto his stomach, fixing his arms to be out in front of him, and actually scooting himself forward. He is doing this as well on his back. We he would normally just be kicking on his back and going in circles not able to really gain traction, he is now learning to dig his heel into the mat and scoot himself while on his back. I love it all of course, I want him to gain this mobility, but wow! We really have to watch him now, he can get places, and fast! And he doesn't have the abilities to wear his tube feeding backpack or move it with him so he gets across the room within seconds and the tube is all stretched out across the floor, you can't leave him alone at all! At this rate we might have to baby proof the house, haha! Something i've never thought we'd have to do!
He did so incredible for his first week. I am so proud of his endurance with such intensive therapy, physically and emotionally. You could tell that towards the third day he was getting tired faster and his body seemed sore. He still powered through though. Overall I am really surprised with how much strength he has, even after having such a hard year in and out of the hospital, barely getting his therapies, not getting answers for his irritability. He really didn't regress at all and is still making great gains, and fast. He is already reaching goals that they made for him on Day 1, and they are already having to change his program and create new goals to reach. He's also doing really well being unhooked from his Gtube vent that is usually on him 24/7 and isn't showing signs of discomfort from being clamped off. He is talking up as storm too and seems to be showing cognitive improvements. Trying to really have conversations and mimicking as well. I love seeing gains in other areas that I wasn't expecting he'd make gains in. I am so thankful we are able to do intensive therapy with him and have such a supportive community helping us. It really is life changing for Silas. I am so excited to see what week two will bring. He did so well this first week, you can tell he is proud of himself when he does the work. I am so thankful he has the opportunity to grasp further control of this body he is stuck inside of. Stay tuned for week 2!
At Napa Silas will be doing one hour of CME and two hours of Neurosuit therapy everyday, Monday through Friday for three weeks. CME, which stands for Cuevas Medek Exercises, is a therapy created by a Chilean Kinesiologist named Ramon Cuevas. The therapy program involves over 3,000 different exercises which each create a different biomechanics challenge for the child. Because a lot of the exercises use gravity as their main component with the child, some of the moves can only be done if they are under a certain height and weight, for safety reasons. When we applied over a year ago Silas was 10 pounds lighter, so now that he is heavier, his CME exercises are more limited. There are still many he can do, since there are over 3,000 within the program, but some of the moves cannot be done on Silas since he is now so tall and heavy. His therapist is adapting the CME program really well to meet his needs despite how big he's gotten and getting creative with him! For neurosuit therapy they wear a special suit that has multiple components. It has a vest, a pair of shorts, knee pads and bungees. There are dozens of small hooks sewn into the suit where the bungees attach and allow for the therapist to place them to assist with proper alignment of the body from the outside. The bungees attach as well onto their shoes. The suit also provides the child with compression to their joints which creates more body awareness for them while sending messages to their central nervous system. And of course with increased body awareness, the child will show improvements in motor planning. The suit allows them to build muscle at a faster pace, so when the child is in it they are working their bodies extra hard which makes the therapy more successful and will help them carry the skills they've learned with the suit on into their daily lives out of therapy and out of the suit. I am very excited to see how both of these therapies combined will help Silas make gains in his developmental progress and in turn help with his behavioral and cognitive progress. We have found that every time Silas develops a new gross motor skill, his cognitive functions also improve. He is so proud of himself when he reaches his goals made for him in therapy. As many of you that follow us know, we have been doing intensive therapy for Silas since he was 18 months old. We wish we would have found it sooner, I truly believe he would be so much further along if we had known about them soon after his birth injury. I am glad that we found it when we did though, and still we started our intensives earlier than most have gotten to. I am also glad we started with MNRI, and chose to branch out to other therapy modules later in his life. I think MNRI provides a really good foundation for children to succeed in other therapies. Reflex integration is so important for everyone, but even more so for those with neurological impairments. So when we decided we were finally ready to make the jump into adding Napa into our outside therapy schedule, I was hesitant but excited to see how it would mesh with our other programs. After experiencing just a couple days of their program I do see a lot of similarities with MNRI. Similar thought processes, and allowing the body to guide them rather then forcing their bodies into positions they are not ready to be in like more traditional therapies often do. I think if you are new to the therapy world, and brain injury or other neurological conditions that require your child to be in therapy, either of these programs would greatly help your child to make gains and progress, but I am so grateful for how we approached our journey. I strongly believe as well that children with such severe injuries like Silas will not make big gains with just traditional therapies, like those offered in his school setting. 30 minutes, three times a week of traditional PT, OT, Speech is not going to help them like these intensive programs do. Their injuries are just too severe, and require so much more attention than what school services can offer. Thats why we have always done intensive therapies with Silas. I am so glad we have the support from the community, grant programs, and foundations to be able to financially attend. I know this life and how we approach Silas' care is just not realistic for most families with children like Silas because all of these programs are typically out of pocket and not covered by insurance. It's amazing how much is out there, from intensive therapies, to stem cells, to robotic gait training, from acupuncture to hyperbaric oxygen diving, to alternative surgeries. If only we could all experience every single one of these, to pick and choose what you think might help your child most, and to have a wishlist like families like us do, is just devastating in general, especially when we can't afford to give our children everything possible that is out there that could help them. So much for daydreaming, we are just SO THANKFUL to be adding Napa to our list of wishes that we ARE able to achieve!
I will try to keep everyone in the loop daily to show Silas' progress and what they are working on with him. I will try to explain to the best of my ability what these programs are doing to help him (as I learn as well) in hopes that we can help other families decide if this would help their children. We are learning as we go, and by the end of the therapy intensive we will have a program to follow through at home. Realistically I wanted to write a blog daily to explain what he did that day, but...LIFE. Life gets in the way...so on day five of our intensive I am just now finding the time to blog and catch everyone up on how Napa is!
So far our favorite is definitely CME. He's doing things with his body that I didn't know he was capable of. I feel confident that this therapy modality will really help him to make gains in understanding what his body is capable of. Creating body awareness, and I'm hoping it will help him to understand how to help protect himself when falling and understand how to move his body more appropriately. He uses his extensor tone and "fake strength" a lot from his spasticity, and throws himself backwards and to the side and is very unsafe (a lot of times during his temper tantrums and behavioral outbursts) but I really hope to see him develop safer ways to move his body. There is a huge difference in his "fake strength" from spasticity and from actual strength from his muscles. I didn't know he was so strong, but seeing him stand up from a full squatting position only using his muscles and not from hyper extension is so cool to see! I also can't wait to see the difference in his core strength from Day 1 to Day 13. I again feel like he has more core strength than I knew he had. It will be interesting to see if his sitting pattern will change. Right now when Silas sits he is on his tailbone rather than his "sit" bone. And he has a very rounded back (kyphosis). I am so curious to see how CME will help him with his posture in sitting.
The Neurosuit therapy is also very cool! I can tell instantly that his body comes into proper alignment when wearing it. When he lays down he postures into a slight "C" shape. He has a 10% scoliosis, but it is postural and not fixed, which is a good thing. I could tell right away that the neurosuit was going to help because after getting all the bungees on, his body was straight rather than curved into that slight "C" shape. He doesn't mind the suit at all, and is actually really fascinated with the bungee cords when he looks at his legs. The suit helps to provide him with the input his body needs, especially in all the different positions they are putting him in, like sitting. He is able to sit in a much better posture with less kyphosis, and the idea is that this should help train his muscles to sit the same that he does in the suit, outside of the suit. The suit is also supposed to help with motor planning. He has been working on a lot of crawling in the suit, and really doing well with shifting his weight and figuring out how to move his arms and legs at the right moments to propel himself forward. I can already see some improvement, because he is non-stop rolling over onto his stomach, fixing his arms to be out in front of him, and actually scooting himself forward. He is doing this as well on his back. We he would normally just be kicking on his back and going in circles not able to really gain traction, he is now learning to dig his heel into the mat and scoot himself while on his back. I love it all of course, I want him to gain this mobility, but wow! We really have to watch him now, he can get places, and fast! And he doesn't have the abilities to wear his tube feeding backpack or move it with him so he gets across the room within seconds and the tube is all stretched out across the floor, you can't leave him alone at all! At this rate we might have to baby proof the house, haha! Something i've never thought we'd have to do!
He did so incredible for his first week. I am so proud of his endurance with such intensive therapy, physically and emotionally. You could tell that towards the third day he was getting tired faster and his body seemed sore. He still powered through though. Overall I am really surprised with how much strength he has, even after having such a hard year in and out of the hospital, barely getting his therapies, not getting answers for his irritability. He really didn't regress at all and is still making great gains, and fast. He is already reaching goals that they made for him on Day 1, and they are already having to change his program and create new goals to reach. He's also doing really well being unhooked from his Gtube vent that is usually on him 24/7 and isn't showing signs of discomfort from being clamped off. He is talking up as storm too and seems to be showing cognitive improvements. Trying to really have conversations and mimicking as well. I love seeing gains in other areas that I wasn't expecting he'd make gains in. I am so thankful we are able to do intensive therapy with him and have such a supportive community helping us. It really is life changing for Silas. I am so excited to see what week two will bring. He did so well this first week, you can tell he is proud of himself when he does the work. I am so thankful he has the opportunity to grasp further control of this body he is stuck inside of. Stay tuned for week 2!
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