A few key influences along the way
When you are on a learning journey there are so many people you meet along the way. We've been fortunate to have some amazing professionals join into our village, educating us along the journey. When you've got a medical team that supervises your child's ongoing health, you become a bit desensitized. While every specialist is important they can begin to run together.
We've had many specialists and about every type of doctor and testing of which you can think. Some of those doctors worked at fancy hospitals in big cities. That didn't make them a part of our village. In fact, it usually just meant they needed a lesson in bedside manner. No, the ones that made the greatest impact were those that we saw day in and day out like our pediatrician, feeding specialist and nutritionist.
Shortly after returning home from the "ground zero" hospitalization Charlie's pediatrician began having us fortify my breastmilk with formula. It seemed that Charlie was running a bit small and his weigh gain trajectory was beginning to fall off the trend line. Little did I know at the time that no matter how much I tried to fortify Charlie's diet, he needed specialized help.
By March 2016 we were on the border of being labeled failure to thrive. Charlie was no longer gaining weight and his head had stopped growing. Our pediatrician, referred us to a GI and Early Intervention. While a coconut oil regimen would be recommended by Charlie's pediatric gastroenterologist, and would help us overcome of our lack of weight gain, it wouldn't be sufficient to overcome Charlie's inability to form and maintain a bolus. Charlie was incredibly weak, he lacked an ability to maintain his head upright. There definitely wasn't any rotary jaw action that a child would need to mash food.
We were evaluated and immediately qualified for physical therapy. An amazing physical therapist, through Illinois's Early Intervention system, worked to get us a specialized chair, a Lecky Squiggles adaptive activity seat with high low base. It would be a pivotal piece of equipment that would the first of many we would battle insurance in order to get. However, this chair would become our secrete to good body positioning and postural support. The lateral head supports would keep Charlie's head from flopping over to one side, providing stable head positioning, something we'd only achieved with pool noodles and towel rolls.
The truth was, Charlie's skull was beginning to come misshapen and deformed from his inability to move off of his back. Charlie's arms were incredibly weak. We did tummy time, he just couldn't lift his head up off the ground. Ultimately, we elected to reshape Charlie's skull using a cranial band. His severe case of hypotonia and torticollis were making it nearly impossible for him to sit independently, or roll over, resulting in a severe case of plagiocephaly. In essence, Charlie's head was very flat in one spot. The flat spot on the back was creating a large bulge in the front. It was causing an orbital deformity of his eye socket and lowering his ear on one side of his head. He would wear the cranial band for 7 months. It would move his ear, reshape his head and realign his neck base on his spine. In order to do it would require traveling every other week for a readjustment. No problem right? It was just a mere 13 miles one way, in evening commuter traffic, in Chicago, for 7 months of the school year. With that said, we would do it again.
It was shortly after receiving his cranial band, and his adaptive chair that Charlie began feeding therapy along with nutrition. We had be desperately trying introduce foods to Charlie in order to increase his caloric intake. The milk would just run out of his mouth and we couldn't get him to drink from a straw. We were attempting to use concentrated fruit purees but they would end up all over him instead of in him. It was as though the food just fell out of his mouth resulting in slow weight gain and chronic constipation. It was with the help and guidance of our feeding specialist and our nutritionist we were able to overcome our major obstacles, staying off stool softeners and a feeding tube. These are two very common challenges of children with feeding disorders.
Recently, I was asked to prepare a video for Charlie's former feeding specialist and speech pathologist, Stephanie Cooper Cohen. Stephanie is one of only two feeding specialists we've had. When you talk about people, and influences that change the trajectory of your child's life, she is one of those people. Not only did she teach me everything I know about feeding, but she has continued to be a powerful presence in our lives.
Another great influence was our nutritionist Amanda Gordon. A Pediatric Dietitian, and Board Certified Lactation Consultant she specialized in providing nutritional support to children with feeding disorders, particularly those that have feeding tubes and mashed diets. These ladies came into our home regularly, educating and sharing their expertise.
See a great deal of my day is spent preparing food, planning positioning, practicing biting and chewing using any number of prosthetic chew toys or tubes. Yet none of that would be possible if it were not for these impact these women had own our journey. It was as a result of the safety net these women provided that the cacophony of noise that radiated from the aftershocks was finally quieted.
To say that these women were key influences along the way would be understating their importance. They are sisters, and mothers, to me and Charlie. These are the women that hugged and cried with me as I learned of my own mother's life altering strokes. They, like me, are daughters and teachers. They too are desperate to help their clients achieve. It is in that necessity, that we bonded, our passions sparking innovation. To this day, I reach out when I need them. They have never left our village. Our lives, its trajectory forever altered because these key influences chose to walk the path with us.
We've had many specialists and about every type of doctor and testing of which you can think. Some of those doctors worked at fancy hospitals in big cities. That didn't make them a part of our village. In fact, it usually just meant they needed a lesson in bedside manner. No, the ones that made the greatest impact were those that we saw day in and day out like our pediatrician, feeding specialist and nutritionist.
Shortly after returning home from the "ground zero" hospitalization Charlie's pediatrician began having us fortify my breastmilk with formula. It seemed that Charlie was running a bit small and his weigh gain trajectory was beginning to fall off the trend line. Little did I know at the time that no matter how much I tried to fortify Charlie's diet, he needed specialized help.
By March 2016 we were on the border of being labeled failure to thrive. Charlie was no longer gaining weight and his head had stopped growing. Our pediatrician, referred us to a GI and Early Intervention. While a coconut oil regimen would be recommended by Charlie's pediatric gastroenterologist, and would help us overcome of our lack of weight gain, it wouldn't be sufficient to overcome Charlie's inability to form and maintain a bolus. Charlie was incredibly weak, he lacked an ability to maintain his head upright. There definitely wasn't any rotary jaw action that a child would need to mash food.
We were evaluated and immediately qualified for physical therapy. An amazing physical therapist, through Illinois's Early Intervention system, worked to get us a specialized chair, a Lecky Squiggles adaptive activity seat with high low base. It would be a pivotal piece of equipment that would the first of many we would battle insurance in order to get. However, this chair would become our secrete to good body positioning and postural support. The lateral head supports would keep Charlie's head from flopping over to one side, providing stable head positioning, something we'd only achieved with pool noodles and towel rolls.
The truth was, Charlie's skull was beginning to come misshapen and deformed from his inability to move off of his back. Charlie's arms were incredibly weak. We did tummy time, he just couldn't lift his head up off the ground. Ultimately, we elected to reshape Charlie's skull using a cranial band. His severe case of hypotonia and torticollis were making it nearly impossible for him to sit independently, or roll over, resulting in a severe case of plagiocephaly. In essence, Charlie's head was very flat in one spot. The flat spot on the back was creating a large bulge in the front. It was causing an orbital deformity of his eye socket and lowering his ear on one side of his head. He would wear the cranial band for 7 months. It would move his ear, reshape his head and realign his neck base on his spine. In order to do it would require traveling every other week for a readjustment. No problem right? It was just a mere 13 miles one way, in evening commuter traffic, in Chicago, for 7 months of the school year. With that said, we would do it again.
It was shortly after receiving his cranial band, and his adaptive chair that Charlie began feeding therapy along with nutrition. We had be desperately trying introduce foods to Charlie in order to increase his caloric intake. The milk would just run out of his mouth and we couldn't get him to drink from a straw. We were attempting to use concentrated fruit purees but they would end up all over him instead of in him. It was as though the food just fell out of his mouth resulting in slow weight gain and chronic constipation. It was with the help and guidance of our feeding specialist and our nutritionist we were able to overcome our major obstacles, staying off stool softeners and a feeding tube. These are two very common challenges of children with feeding disorders.
Recently, I was asked to prepare a video for Charlie's former feeding specialist and speech pathologist, Stephanie Cooper Cohen. Stephanie is one of only two feeding specialists we've had. When you talk about people, and influences that change the trajectory of your child's life, she is one of those people. Not only did she teach me everything I know about feeding, but she has continued to be a powerful presence in our lives.
Another great influence was our nutritionist Amanda Gordon. A Pediatric Dietitian, and Board Certified Lactation Consultant she specialized in providing nutritional support to children with feeding disorders, particularly those that have feeding tubes and mashed diets. These ladies came into our home regularly, educating and sharing their expertise.
See a great deal of my day is spent preparing food, planning positioning, practicing biting and chewing using any number of prosthetic chew toys or tubes. Yet none of that would be possible if it were not for these impact these women had own our journey. It was as a result of the safety net these women provided that the cacophony of noise that radiated from the aftershocks was finally quieted.
To say that these women were key influences along the way would be understating their importance. They are sisters, and mothers, to me and Charlie. These are the women that hugged and cried with me as I learned of my own mother's life altering strokes. They, like me, are daughters and teachers. They too are desperate to help their clients achieve. It is in that necessity, that we bonded, our passions sparking innovation. To this day, I reach out when I need them. They have never left our village. Our lives, its trajectory forever altered because these key influences chose to walk the path with us.
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