Sylis Creed Rewinkel was born on May 7, 2019. The third and last child in our family of five.
My pregnancy was rough. I had gestational diabetes. I was monitored closely and regulated my sugars with diet. I chose not to have any genetic testing while pregnant. Because of health concerns, my doctor opted to induce labor at 37 weeks, 1 day with Sylis.
He came out 6 pounds, 12 ounces. He seemed happy and healthy. He seemed small and skinny, but this was on par with my other children.
Right away, we noticed that Sylis had an extreme soft spot. His skull was open all the way down in between his eyes. At his birth and two-week check, we mentioned this to the doctor. It wasn’t something they were concerned about.
At a year old, he couldn’t roll from belly to back, sit up, walk, or even really hold his head up. He could roll from back to belly but had no means of locomotion. As soon as our doctor examined him, he said there was something wrong and we needed to start services. Immediately, we were contacted by our school district. They had PT, OT, and resource evaluate him. He qualified for services immediately.
Since his physical abilities were so delayed, PT started seeing him once a week. At a year old, Sylis couldn’t eat solid food and was strictly formula fed by bottle. For this reason, OT started seeing him every other week. Since there didn’t seem to be a mental delay, resource only saw Sylis once every 3 months.
Shortly after services started, COVID hit. The providers were not allowed to do in-person visits to help Sylis. They sent as much documentation as they could, and I had to fulfill the services myself. Within 6 months, Sylis could roll and sit up. Within another 6 months, Sylis could shuffle side to side along the walls to get around. As COVID died down, the service providers were able to do in-person visits. Shortly after this, his physical therapist noticed his speech was quite delayed. Because of this, resource and speech started seeing him every other week, together.
This seemed to be the push he needed to get going. His speech and physical delays have improved immensely. However, he is still delayed.
During a well-child visit in the summer of 2022, the doctor recommended we do genetic testing on Sylis. He couldn’t tell us what his suspicions were, but he believed there was an abnormality. Sylis was seen by the genetics team at Sanford Children’s Specialty Clinic in Sioux Falls, SD. It took a few months for the first round of results to come back. There was no abnormality. They wanted to do further testing and collected samples from me and my husband. These results took several weeks to come back as well. And when they did, we learned that Sylis has a de novo deletion of his ANKRD-11 gene that has caused KBG Syndrome.
In August of 2022, his IFSP transitioned into an IEP. Through this, they recommended we do early preschool at three. The only option in our area was with a private church school. Aside from being delayed, Sylis is also not potty trained. This is due to a cognitive understanding as well as a physical barrier. In October of 2022, we had parent-teacher conferences for Sylis. The teacher informed us that Sylis was incredibly delayed physically, mentally, and socially compared to the other children. She told us that he had until the end of October to catch up or he wouldn’t be allowed back in November.
I immediately met with his team and the superintendent of our school as he is our contact for district representation. We devised a plan to hold another IEP meeting and invite the teacher. We wanted her to see where Sylis started and how far he had come. They were also concerned that she was not evaluating him appropriately. As an example, she said that Sylis didn’t interactively play with other children. She noted he did parallel play, though. When I mentioned this to his resource teacher, she informed me that for his age, that is appropriate.
During the special IEP meeting, the teacher had nothing to add, nothing positive to say, and didn’t seem to want to be there. At this point, I didn’t feel comfortable letting him attend. I was very concerned with how he was going to be treated. We all decided it would be best for me to pull him in October. Next school year (August 2023), he will be able to attend the 4-year-old preschool at the public school where his IEP will be honored.
Currently, Sylis is 3 years and 9 months old. He sees resource and speech every other week. He sees PT every week, and he sees OT once every 6 months. Sylis can do everything physically that he should be. However, his gait and methods of movement are not natural and you can tell his body feels foreign to him. Recently, we have noticed behavioral changes. He struggles with regulation, intense stimming, social cues, and eye contact. He's very awkward around people. We reached out to his team at Sanford and have been referred to their behaviorist. The school has also set us up with their psychologist. We are expecting some academic delays once Sylis can attend school next year. They are prepared to assist him as much as he needs.
We are so blessed to have our little miracle baby. Not only is Sylis our own personal miracle because of his condition, he is our rainbow baby. This makes him extra special to us.
Everyone has a story to tell, here's some of ours. Whether diagnosed early or diagnosed decades later, each KBG story is as unique as their fingerprints (yes, we do have fingerprints).