Get Joe Swimming Again
Donation protected
The most important thing to know about Joseph Garver is how resilient he is. The second most important piece of information about this boy with the cutest half smile is how much he loves the water. Water is the one place on earth that Joe is free from the use of a wheelchair, a standing frame, gait trainer, foot braces, and a personal support person. In the water he is free from all equipment and his pain is as relieved as it can be. He can twist, splash, and float to his heart's content. He can also play a mean game of “I won’t swim near you because that means I have to get out!”
Over the last four years, Joe has been through numerous surgeries and procedures. He has weathered immeasurable pain and suffering. On Joe’s health record, he has 91 pages filled with doctors appointments. At around eight to ten appointments per page, that is between 728-910 doctor visits in his short life, and that doesn’t even include the specialty clinics he has to visit.
In 2015 Joe was 35 pounds and suffering from an extreme leak in his feeding tube that his pediatric surgeon did not address, causing malnutrition, skin breakdown, and immense pain and suffering. In 2016, his orthopedic doctors wanted to address his severe scoliosis by placing rods in his back to correct a curve that could eventually affect his lungs.
In the fall of 2016, Joe underwent a ten hour procedure placing the rods on his spine. The wait was the longest, most excruciating time apart from her child that his mom, Penny, has ever known. His family regularly states they wish they had known the road ahead for him, as it changed their whole life. The boy who went into that first back surgery is not the boy who came back to them. Almost immediately the rods began to move away from Joe’s spine and two days after Christmas he was in surgery again because his bones were too soft to hold the rods in place. During these hospital stays, Joe’s family pleaded with the surgery team to give Joe a feeding tube revision; however, their begging and advocating went ignored for a very long time. Despite being so small and his pain meds and food could not be adequately delivered through his feeding tube, Joe managed to heal again and begin his physical therapy to regain strength.
By April of 2016, Joe’s pain was all too close, and his discomfort was notable. In May of 2016 Joe’s family saw that the rods had moved away from the base of his spine. Once again in the hospital, his family continued to seek an answer for the feeding tube. Again, their concerns were dismissed. Doctors insisted that this kind of issue was typical for a child with a disability. Knowing quality of life is not something only for children of typical development, his family pressed for more answers, and eventually Joe’s doctors gave him a nasogastric feeding tube. Joe’s rods were repaired at the base of his spine and he was sent home with the NG tube.
The nasogastric feeding tube led to the year-long battle begging surgeons to put in another tube and revise the site that was allowing food and medication leak out of him, literally onto the floor. In February 2017, after tens of emergency room trips, many appointments, calls, and messages sent, Joe was referred to a doctor that was ready to listen. Two doctors were to be present at this unusual appointment. Joe’s brave and unwavering family was prepared. Joe received a much-hated haircut, volume was turned to loud on his Proloquo2go app so his iPad-generated voice would be heard loud and clear, and he was dressed in his finest, so the docs would see the beautiful boy he was - rather than just his disability. His mother and step father walked in with a flash drive filled with footage of the leakage, skin breakdown, the crying from the pain while countless dressings were changed, and a speech given to the initial pediatric surgery team and other disregarding doctors countless times. Our team finally committed to the change so that Joe could receive proper nutrition. Joe gained 30 pounds within three months.
Sadly, Joe’s trying times were not over.
Joe was never the same, and in 2018 and 2019, he had low energy, chronic pain, and inexplicable illness. He had every test one could come up with to evaluate what was happening inside of him. On June 26, 2019, a bone infection presented itself and Joe’s fight for health began again. In one week he endured three procedures. The rods were removed and his back was cleared of the infection. He was placed on a PICC line, given strong antibiotics, and monitored around the clock. He could not swim and spent his summer at home in bed.
Fast forward to 2020. January 3, 2020 a small lesion appeared on Joe’s back and he was in surgery again for possible infection. From there, many of you know the rest. The pandemic closed the only two therapy pools in town, wildfires kept him inside, and extreme COVID-19 risk conditions kept us from putting Joe at risk with the general public. His small world where he could be out in the community, swimming and seeing friends, got a whole lot smaller.
Please help us give this boy the freedom that only water can give him in the safety of his home. We are asking for the community that loves this sweet boy to help us raise money for a swim spa, so that Joe can have weekly physical therapy and recreational swimming in the safety of his own home. The funds will be used to purchase a swim spa, a lift to get Joe in the spa safely, the pad needed underneath, and for chemicals and maintenance.
Thank you,
The Baumann Family
#joefundme #josephgarver #justkeepswimming
Over the last four years, Joe has been through numerous surgeries and procedures. He has weathered immeasurable pain and suffering. On Joe’s health record, he has 91 pages filled with doctors appointments. At around eight to ten appointments per page, that is between 728-910 doctor visits in his short life, and that doesn’t even include the specialty clinics he has to visit.
In 2015 Joe was 35 pounds and suffering from an extreme leak in his feeding tube that his pediatric surgeon did not address, causing malnutrition, skin breakdown, and immense pain and suffering. In 2016, his orthopedic doctors wanted to address his severe scoliosis by placing rods in his back to correct a curve that could eventually affect his lungs.
In the fall of 2016, Joe underwent a ten hour procedure placing the rods on his spine. The wait was the longest, most excruciating time apart from her child that his mom, Penny, has ever known. His family regularly states they wish they had known the road ahead for him, as it changed their whole life. The boy who went into that first back surgery is not the boy who came back to them. Almost immediately the rods began to move away from Joe’s spine and two days after Christmas he was in surgery again because his bones were too soft to hold the rods in place. During these hospital stays, Joe’s family pleaded with the surgery team to give Joe a feeding tube revision; however, their begging and advocating went ignored for a very long time. Despite being so small and his pain meds and food could not be adequately delivered through his feeding tube, Joe managed to heal again and begin his physical therapy to regain strength.
By April of 2016, Joe’s pain was all too close, and his discomfort was notable. In May of 2016 Joe’s family saw that the rods had moved away from the base of his spine. Once again in the hospital, his family continued to seek an answer for the feeding tube. Again, their concerns were dismissed. Doctors insisted that this kind of issue was typical for a child with a disability. Knowing quality of life is not something only for children of typical development, his family pressed for more answers, and eventually Joe’s doctors gave him a nasogastric feeding tube. Joe’s rods were repaired at the base of his spine and he was sent home with the NG tube.
The nasogastric feeding tube led to the year-long battle begging surgeons to put in another tube and revise the site that was allowing food and medication leak out of him, literally onto the floor. In February 2017, after tens of emergency room trips, many appointments, calls, and messages sent, Joe was referred to a doctor that was ready to listen. Two doctors were to be present at this unusual appointment. Joe’s brave and unwavering family was prepared. Joe received a much-hated haircut, volume was turned to loud on his Proloquo2go app so his iPad-generated voice would be heard loud and clear, and he was dressed in his finest, so the docs would see the beautiful boy he was - rather than just his disability. His mother and step father walked in with a flash drive filled with footage of the leakage, skin breakdown, the crying from the pain while countless dressings were changed, and a speech given to the initial pediatric surgery team and other disregarding doctors countless times. Our team finally committed to the change so that Joe could receive proper nutrition. Joe gained 30 pounds within three months.
Sadly, Joe’s trying times were not over.
Joe was never the same, and in 2018 and 2019, he had low energy, chronic pain, and inexplicable illness. He had every test one could come up with to evaluate what was happening inside of him. On June 26, 2019, a bone infection presented itself and Joe’s fight for health began again. In one week he endured three procedures. The rods were removed and his back was cleared of the infection. He was placed on a PICC line, given strong antibiotics, and monitored around the clock. He could not swim and spent his summer at home in bed.
Fast forward to 2020. January 3, 2020 a small lesion appeared on Joe’s back and he was in surgery again for possible infection. From there, many of you know the rest. The pandemic closed the only two therapy pools in town, wildfires kept him inside, and extreme COVID-19 risk conditions kept us from putting Joe at risk with the general public. His small world where he could be out in the community, swimming and seeing friends, got a whole lot smaller.
Please help us give this boy the freedom that only water can give him in the safety of his home. We are asking for the community that loves this sweet boy to help us raise money for a swim spa, so that Joe can have weekly physical therapy and recreational swimming in the safety of his own home. The funds will be used to purchase a swim spa, a lift to get Joe in the spa safely, the pad needed underneath, and for chemicals and maintenance.
Thank you,
The Baumann Family
#joefundme #josephgarver #justkeepswimming
Organizer and beneficiary
Zoe Baumann
Organizer
Salem, OR
Penny Lane
Beneficiary