Bennett Felsheim Fund
Donation protected
Update as of Wednesday October 4, 2017:
It's been quite awhile since the last update on Bennett...aka, Super Bennett. Bennett has overcome many obstacles and defied odds and is now approaching is 2nd birthday! He is the sweetest boy and always has a smile for anyone he meets.
Bennett's condition still makes it necessary to monitor his health carefully because any cold or virus is very dangerous. At almost 2 years old, Bennett has seen the inside of the doctor's office or hospital more than most people do in a lifetime. Care for Bennett is round-the-clock, with full time in-home nursing care during the day and mom and dad taking over at night.
Because of his condition, Bennett is unable to eat and drink like most kids and requires tube feeding. Because he does not swallow like you and me, he also needs constant suctioning treatments. He often has a hard time breathing. So much so, that doctor's advised mom and dad that someday he may require a tracheostomy.
Earlier this week, Bennett was yet again admitted to the hospital because he was unable to sustain healthy oxygen levels. Mom and dad received the news they knew was in the future, but were not ready to hear out loud. On Thursday, little Bennett - our hero and super fighter - will undergo surgery to receive a tracheostomy. According to him mom "After surgery, he will be fully sedated and immobile for 7 days in order for the trach to heal. After the 7 days, they will begin waking him up and weaning him off of sedation and pain medications. For someone with healthy lungs, that would take up to a week. Since Bennett's lungs are damaged from chronic aspiration, his time adjusting to the trach will be longer. Probably 2 weeks or so. He will likely develop pneumonia also. So, we are settling in for a long stay but are just looking to tomorrow with hope and strength and will take things day by day." He will most likely be in the hospital for a few weeks and then go home with a ventilator.
Tonight the family is with Bennett and has been taking videos of him smiling and cooing. They have been told they will most likely not hear his voice again after the surgery.
Kristin (mom) and Greg (dad), as well as Avery (big sister) and PJ (big brother) are the strongest people I know. They have fought so hard to give Bennett the most normal and wonderful life that he so deserves and their strong faith in God is the engine that keeps them going. "Our mission every day when we wake up is making Bennett happy and comfortable"
At this time, Mom and Dad's priority is to Bennett and big brother and sister. Other priorities, including their careers - must come to a stand still at the moment. Unfortunately, life around them will continue and the financial burdens will continue to mount.
Please consider helping this beautiful family continue to care for their little fighter without having to worry about paying for supplies, equipment, therapy, etc.
Thank you for your support of little Bennett and the Felsheim family and God Bless!
Previous post from last year:
Little Bennett has been a strong fighter since he was born in November, 2015. Immediately after birth he was placed in the NICU due to various medical issues and remained there until January 2016.
Recently, Bennett was diagnosed with a very rare genetic disorder called Nemaline Myopathy. Little Bennett has the intermediate to severe strain of the disorder - http://rarediseases.org/rare-diseases/nemaline-myopathy/.
Bennett's family are fighters, too! Mom (Kristin) and Dad (Greg) both continue to work full-time, raise big sister Avery and big brother P.J., and care for Bennett's medical needs (at this time, in-home nursing care has not been placed in the home). Care for little Bennett includes N.G. tube feedings (he does not suck on a bottle), constant medical equipment monitoring (especially at night), many, many doctor appointments, and lots of snuggles and kisses.
The hard part about this disorder is that the mortality rate for children under 2 is 66%. The top priority for the family is to keep Bennett as healthy as possible so he can have as normal of a life as possible.
With that said, the family has many things to prepare for and consider as they absorb this diagnosis and prepare for the future. Unfortunately, how to pay for medical costs not covered by insurance will be part of that planning.
Please consider helping this beautiful family continue to care for their little fighter without having to worry about paying for supplies, equipment, therapy, etc. that will certainly be part of his life.
Bennett has made everyone he has touched a better person.
Thank you for your support of little Bennett and the Felsheim family and God Bless!
It's been quite awhile since the last update on Bennett...aka, Super Bennett. Bennett has overcome many obstacles and defied odds and is now approaching is 2nd birthday! He is the sweetest boy and always has a smile for anyone he meets.
Bennett's condition still makes it necessary to monitor his health carefully because any cold or virus is very dangerous. At almost 2 years old, Bennett has seen the inside of the doctor's office or hospital more than most people do in a lifetime. Care for Bennett is round-the-clock, with full time in-home nursing care during the day and mom and dad taking over at night.
Because of his condition, Bennett is unable to eat and drink like most kids and requires tube feeding. Because he does not swallow like you and me, he also needs constant suctioning treatments. He often has a hard time breathing. So much so, that doctor's advised mom and dad that someday he may require a tracheostomy.
Earlier this week, Bennett was yet again admitted to the hospital because he was unable to sustain healthy oxygen levels. Mom and dad received the news they knew was in the future, but were not ready to hear out loud. On Thursday, little Bennett - our hero and super fighter - will undergo surgery to receive a tracheostomy. According to him mom "After surgery, he will be fully sedated and immobile for 7 days in order for the trach to heal. After the 7 days, they will begin waking him up and weaning him off of sedation and pain medications. For someone with healthy lungs, that would take up to a week. Since Bennett's lungs are damaged from chronic aspiration, his time adjusting to the trach will be longer. Probably 2 weeks or so. He will likely develop pneumonia also. So, we are settling in for a long stay but are just looking to tomorrow with hope and strength and will take things day by day." He will most likely be in the hospital for a few weeks and then go home with a ventilator.
Tonight the family is with Bennett and has been taking videos of him smiling and cooing. They have been told they will most likely not hear his voice again after the surgery.
Kristin (mom) and Greg (dad), as well as Avery (big sister) and PJ (big brother) are the strongest people I know. They have fought so hard to give Bennett the most normal and wonderful life that he so deserves and their strong faith in God is the engine that keeps them going. "Our mission every day when we wake up is making Bennett happy and comfortable"
At this time, Mom and Dad's priority is to Bennett and big brother and sister. Other priorities, including their careers - must come to a stand still at the moment. Unfortunately, life around them will continue and the financial burdens will continue to mount.
Please consider helping this beautiful family continue to care for their little fighter without having to worry about paying for supplies, equipment, therapy, etc.
Thank you for your support of little Bennett and the Felsheim family and God Bless!
Previous post from last year:
Little Bennett has been a strong fighter since he was born in November, 2015. Immediately after birth he was placed in the NICU due to various medical issues and remained there until January 2016.
Recently, Bennett was diagnosed with a very rare genetic disorder called Nemaline Myopathy. Little Bennett has the intermediate to severe strain of the disorder - http://rarediseases.org/rare-diseases/nemaline-myopathy/.
Bennett's family are fighters, too! Mom (Kristin) and Dad (Greg) both continue to work full-time, raise big sister Avery and big brother P.J., and care for Bennett's medical needs (at this time, in-home nursing care has not been placed in the home). Care for little Bennett includes N.G. tube feedings (he does not suck on a bottle), constant medical equipment monitoring (especially at night), many, many doctor appointments, and lots of snuggles and kisses.
The hard part about this disorder is that the mortality rate for children under 2 is 66%. The top priority for the family is to keep Bennett as healthy as possible so he can have as normal of a life as possible.
With that said, the family has many things to prepare for and consider as they absorb this diagnosis and prepare for the future. Unfortunately, how to pay for medical costs not covered by insurance will be part of that planning.
Please consider helping this beautiful family continue to care for their little fighter without having to worry about paying for supplies, equipment, therapy, etc. that will certainly be part of his life.
Bennett has made everyone he has touched a better person.
Thank you for your support of little Bennett and the Felsheim family and God Bless!
Organizer and beneficiary
Brenda Ewald Kirsch
Organizer
Sioux Falls, SD
Kristin Felsheim
Beneficiary