Baby Kolten's Medical Fund

This is our son Kolten David Simon. He was born 3 weeks early on 3/31/15.  At our 20 week ultrasound we found out that our son has Arnold Chiari Malformation which is a condition in which brain tissue extends into the spinal canal blocking the flow of fluid which can cause permenant brain damage and mental development issues.

Later ultrasounds confirmed that he has Spina Bifida which is causing the Arnold Chiari Malformation.

When he was born the result from his Spina Bifida was permenant spine damage on his L1 through L5 vertabrates and underdevelopment of his leg muscles.  His spine was incomplete  resulting in a Myelomeningocele which is a protruding sack on his back that causes his spinal nerves and fluid to be exposed. The lack of movement in his legs also caused his right foot to be clubbed.


On the second day of his life Kolten underwent his first surgery to repair the Myelomeningocele and close up his back to protect any further damage on his spine.  He spent the next 6 days in the NICU for recovery.  



Due to the closer of his back the pressure was increased in his head resulting in Hydrocephalus which is a build up of fluid in his head.  On the 7th day of his life Kolten underwent his second surgery to place a VP Shunt in his head to relieve the pressure and drain the fluid through a tube down into his abdomen.




After 11 total days in the NICU Kolten was allowed to come home.  

Due to the underdevelopment of his lower body muscle funtion Kolten lacks full control of his bladder and bowel movements.  Each diaper change we have to put a special cream on his butt to prevent skin break down do to his leakage of stool.  We also have to Cath him 3 times daily to fully drain his bladder. 

Recent Urology visits have determined that he is gaing some control over his urinating and after 3 weeks we were able to stop the Catheters.

Kolten has just began a series of castings to fix his club foot too.

The castings need to be changed weekly for 2 months and will help put his foot in the best postion.  In the next months and beyond he will undergo lots of therapies and with lots of prayers and work hopefully he will be able to walk with the assistance of braces.

He is now 7 weeks old and showing good signs of progression.  The upcoming years are going to be hard and long.  We have weekly doctor visits for the forseeable future to help Kolten on every level to be the best he can be.

With a lot of love and support Kolten can live life to his fullest potential.