A Project Celebrating Differences and Triumphs
Colton is Beautifully Different
Meet sweet Colton! Colton is a beautiful and vibrant little boy. He has Congenital Hydrocephalus, Partial Agenesis of the Corpus Callosum, and Chiari Malformation. Colton is Beautifully Different!
Congenital Hydrocephalus is a condition where the CerebroSpinal Fluid in his brain has no way to re-absorb into his body, as it should. There is currently no known way to prevent or cure hydrocephalus and the only treatment option today requires brain surgery. Colton wasn’t even 24 hours old, when he received his first brain surgery to insert a medical device called a “shunt” into his brain. It has a tube that goes behind his ear, in his neck, all the way down to a cavity in his abdomen to drain the CSF from his brain. Unfortunately, shunts have a very high failure rate – 50% of shunts fail within the first 2 years. When Colton was 6 months old, his shunt stopped working, which caused his head to grow at a rapid rate, and he had to have another brain surgery to replace it.
Partial Agenesis of the Corpus Callosum
Partial Agenesis of the Corpus Callosum, which means that he’s missing the middle part of his brain that connects the two hemispheres of his brain. Your left brain controls the right side of your body, and your right brain controls the left side of your body. The corpus callosum is called the “information highway” that communicates to both sides of your brain. Colton is missing this piece, and things that come natural and easy for “neural typical children”, is more challenging for Colton. He has received Occupational Therapy, and Physical Therapy since he was and infant, and he started Speech Therapy at 18 months. Colton receives an hour of each therapy a week to help him hit milestones
A Chiari Malformation, is a condition where the bottom part of Colton’s brain is being pushed into his spinal column. This causes pressure on the cerebellum and brain stem that may affect functions controlled by these areas and block the flow of cerebrospinal fluid (CSF). This is a serious condition that may cause a variance of symptoms, and they are still investigating what it means for Colton. He has periodic MRIs to check for pockets of CSF called Syrinx. If he were to have a syrinx (cyst of blocked CSF), and becomes symptomatic, he will need an intense brain surgery called a “decompression” where they cut away some of the bone in the skull to make room for his brain, to hopefully relieve pressure.
When Colton’s parents went in for their 18 week anatomy scan (during pregnancy) the ultrasound tech continured to measure his head multiple times. During that ultrasound, they found that the ventricles in Colton’s brain were enlarged, and they were concerned. His Mom had to receive bi-weekly ultrasounds the rest of her pregnancy, where they observed his ventricles and head circumference continue to grow at a rapid rate. Through MRIs, they discovered the Partial Agenesis of the Corpus Callosum, and Chiari Malformation. Colton has had 4 brain surgeries so far, and there is a possibility that there will be more.
A Day In The Life of Colton
Because of Colton’s conditions, he is prone to seizures, but has never had one. His family is always on alert that he may have a seizure, or that his shunt may fail at any time. Colton receives an hour each of Physical, Occupational and Speech Therapy every week. He also has an array of specialists that he sees periodically. Colton is a very “go with the flow” kind of kid and adapts to all of these things very well. He is a very social toddler, and loves meeting new people and making them smile. Brain Conditions are tricky because they are invisible to the naked eye, and if you were to look at Colton, you would never know the things that he’s been through, or the things that he’s over come.
Loving. Social. Warrior.
Colton has been through so much in his life and yet he is always smiling. He wakes up with a smile, and is constantly doing things to make others smile! Colton brings so much joy wherever he goes. At church he is known for how loving he is, as he’s always giving hugs and “booms” (Fist bumps) to anyone he meets. Things may be challenging for him, yet he takes things in strides and is always willing to try new things. He is obsessed with Sesame Street and can name every character of the show! His favorite song is the Itsy Bitsy Spider, and My God is so big. He loves cars, trucks and tractors! He Mom says he is truly her hero, and the biggest warrior she ever met. I could not agree more! Colton is such a special and amazing little boy!
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