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Carson will be having her 23rd surgery this summer. On July 18, Carson will undergo her biggest surgery of her life at Morgan Stanley Children's Hospital in New York City. She will be undergoing a bladder augmentation and they will reposition her current stomas.
We've been told after surgery she will spend 2 days in the PICU and when she is stable, she will be moved to a regular floor for approximately 2 weeks. After she is discharged, we will stay another 3 days just to make sure she is stable for the trip back home. 6 weeks later, we will have to return to New York for a procedure to see if the inside of her bladder has healed appropriately.
Thankfully, my mother's family is not far from the hospital and housing will not be an issue! I will be staying with Carson the entire time, but my family will be coming and going.
Money that is donated to our Go Fund Me site will help us with transportation ( to and from NYC, tolls for crossing the GW bridge, parking, etc) medical bills, and the day to day items needed while we are living in the hospital.
We are very hopefully that this massive surgery will be able to help Carson return to the active girl that she is. I pray this is the answer!
*A little about Carson. Carson is a beautiful 11 yr old girl with a heart of gold. She was born at 31 weeks with her twin brother Cooper. She spent 26 days in the NICU before she could come home. All looked well with Carson at that time.
At 6 months she was diagnosed with a skull condition called Craniosynostosis. Craniosynostosis is when the skull is fused before the brain is done growing. She has had 4 surgeries to help repair her skull. Her first at 8 months old and her 4th at age 11.
Carson also was diagnosed with Chiari Malformation type 1 (along with my 2 older children). Chiari Malformation is when there isn't enough room in the skull and the cerebellum gets pushed downward and intertwines with the spinal cord. There is no cure for Chiari. Only surgery to help with symptoms. Carson had brain surgery at age 4.
Chiari is a nasty beast. Carson's Chiari damaged her nerves to her bladder and bowels. It's called Neurogenic bladder and bowels. At age 5, Carson had surgery to help with her NG BB. They to her appendix out, cut it into 2 pieces and made two stomas. One for urine, Mitrofanoff, and one for stool, MACE.
She will forever need to cath to urinate and we will forever have to flush her bowels. We learned a few months ago that Carson's bladder has not grown since she was 5 yrs old. So this surgery, in July, will be to make Carson's bladder larger.
This is a small part of Carson's story. She is has been complete rockstar through it all! We love her to pieces!
#CHIARISUCKS!!!!
Thank you!

We've been told after surgery she will spend 2 days in the PICU and when she is stable, she will be moved to a regular floor for approximately 2 weeks. After she is discharged, we will stay another 3 days just to make sure she is stable for the trip back home. 6 weeks later, we will have to return to New York for a procedure to see if the inside of her bladder has healed appropriately.
Thankfully, my mother's family is not far from the hospital and housing will not be an issue! I will be staying with Carson the entire time, but my family will be coming and going.
Money that is donated to our Go Fund Me site will help us with transportation ( to and from NYC, tolls for crossing the GW bridge, parking, etc) medical bills, and the day to day items needed while we are living in the hospital.
We are very hopefully that this massive surgery will be able to help Carson return to the active girl that she is. I pray this is the answer!
*A little about Carson. Carson is a beautiful 11 yr old girl with a heart of gold. She was born at 31 weeks with her twin brother Cooper. She spent 26 days in the NICU before she could come home. All looked well with Carson at that time.
At 6 months she was diagnosed with a skull condition called Craniosynostosis. Craniosynostosis is when the skull is fused before the brain is done growing. She has had 4 surgeries to help repair her skull. Her first at 8 months old and her 4th at age 11.
Carson also was diagnosed with Chiari Malformation type 1 (along with my 2 older children). Chiari Malformation is when there isn't enough room in the skull and the cerebellum gets pushed downward and intertwines with the spinal cord. There is no cure for Chiari. Only surgery to help with symptoms. Carson had brain surgery at age 4.
Chiari is a nasty beast. Carson's Chiari damaged her nerves to her bladder and bowels. It's called Neurogenic bladder and bowels. At age 5, Carson had surgery to help with her NG BB. They to her appendix out, cut it into 2 pieces and made two stomas. One for urine, Mitrofanoff, and one for stool, MACE.
She will forever need to cath to urinate and we will forever have to flush her bowels. We learned a few months ago that Carson's bladder has not grown since she was 5 yrs old. So this surgery, in July, will be to make Carson's bladder larger.
This is a small part of Carson's story. She is has been complete rockstar through it all! We love her to pieces!
#CHIARISUCKS!!!!
Thank you!