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Colton's Story (Lincoln)

This is Colton Wertz’s story:

Hello! My name is Colton Wertz and I am 10 years old. I am in 5th grade at Lincoln Elementary. I was born on April 10, 2012 at full term. I am on the Autism Spectrum. I really enjoy playing sports and watching sports! I really look up to my big brother Grant who plays baseball and helps me when I play my sports. I am on the Morton Red Wings team for basketball and this year we are going to have a bowling team as well. I also enjoy traveling and being with my family. My family and I are very thankful for the Children’s Hospital of Illinois and happy that it is so close to us to use. My journey with the Children’s Hospital started when I was about 2 weeks old. I was crying continuously and no one knew why so my mom took me to the emergency room after trying everything that my mom could think of to help me. The doctors in the emergency room couldn’t find anything wrong so they sent us up to the PICU (Pediatric Intensive Care Unit) floor in the Children’s Hospital to be monitored for a few days to help find the reason for me crying so much. The nurses, techs, and doctors were amazing! They held me, fed me, and bathed me to help my mom out throughout our stay there. That’s when we knew we were in the right place for perfect care! The only thing that was found by the doctors was that I had acid reflux/Colic, which was an easy fix with some medicine and special formula.

I was also born with Hydrocephalus. Hydrocephalus is where you have extra fluid around your brain. My bones on the top of my skull did not fuse together due to all the extra fluid. The top of my head had only skin from the top of my forehead to the crown of my head; and from top of my left side to the top of the right side. A neurosurgeon at the Children’s Hospital monitored the fluid to see if I needed to have surgery or not to close the soft spot. It eventually grew together as I grew, so thankfully, I didn’t need to have surgery for that. I was also born with low muscle tone, so it was hard for me to move around when I was a baby. I started physical therapy through OSF when I was 6 months old to build up my muscles. My therapist and mom set a goal that I would start walking on my own by the time I turned 2 years old and on my 2nd birthday I took off walking all by myself. I also had to wear braces on my ankles to help support them since they were weak. Now I walk, run, jump, and everything on my own just fine. I do this with no help or support and no longer need physical therapy! Along with physical therapy, I had speech therapy (I was tongue tied) and feeding therapy (I was a silent aspirator and all liquids had to be thickened).

I started having seizures at about 6 months old as well, and started to see a neurologist at the Children’s Hospital. I had to stay at the hospital for a couple days for testing. The test consisted of wires attached to my head and to a machine that would record the wavelengths in my brain. The seizures I was having were Hydroclonic seizures, which are a jolting of the body. I was put on a medication to help control my seizures and had several visits and more testing with my neurologist to check on the seizures and make any adjustments that were needed to help. I was having multiple ear infections, so I went to the Children’s Hospital for a surgery to put tubes in my ears to help drain my ears out. Once the tubes were in, my seizures stopped and the doctor was amazed that they had stopped. Yay! We also saw a Genetics doctor to see if anything was connected through my parents, but nothing was ever found genetically. We think that the seizures were caused by the extra fluid on my brain, but also not 100% sure either. When I was 3 years old, I had my tonsils and adenoids removed and another set of tubes put in my ears. The doctors decided to have me stay at the Children’s Hospital to help me stay hydrated since I was having a hard time drinking. I stayed for a couple days at the hospital and then went home for a couple days, but ended up back at the hospital for a couple more days for dehydration. When I was 4 years old, I had to have umbilical hernia repair and inguinal hernia repair. That was one of my easier surgeries! At 7 years old the doctors decided it was time to clip my tongue because I was so tongue tied. This was one of my hardest surgeries because the underneath of my tongue was so tight that I had to go back to the hospital a couple times to get it clipped so I could stretch my tongue past my lips without it pulling and making It bleed. I had a hard time with that surgery but my doctor and nurses were really good and did their best at making it easier for me and my family. The last thing I have been diagnosed with at the beginning of 2022 (9 years old) was hearing loss. I have 50% hearing loss in both of my ears so now I wear hearing aids. The coolest thing about my hearing aids is that I got to pick out some cool colors that were marbled and molded together. It was coolest thing when I first got my hearing aids and I walked outside and heard noises that I have never heard before. It was awesome! Overall, all the nurses and doctors that I have seen or continue to see through OSF and the Children’s Hospital have been wonderful to my family and me. They always made sure we had everything we needed and were as comfortable as possible. They are all amazing people and I would not choose to go anywhere else for care. They have all helped me in different ways to get me where I am today! The Children’s Hospital of Illinois is the best!!

As his mother, I am so blessed for everything the Children’s Hospital has done for Colton and our family. They truly know how to help and make things the easiest it can be for us as parents when sometimes it can be really challenging going through some of the obstacles we have to go through. We are so thankful for all the help we have had over the years from the teachers at school and the nurses and doctors we have had or still have now to help get Colton to where he is now and continue to help him grow! We are definitely thankful for the Children’s Hospital and everything they do for the children! Thank you again to everyone who has helped/helping Colton along on his journey! Also thank you for letting us share Colton’s story!!

The Wertz Family


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