Excerpts written by Ray’s mom, Keely Goettsch.
Raymond, aka Ray, was welcomed into the world on May 14, 2010, by his mom, dad, sister and two brothers. His life started with a routine doctor visit at 35 weeks with an ultrasound tracking his weight because doctors knew he had intestinal issues. The ultrasound showed Raymond would need to be delivered that day due to his decline in weight. The prior week, Ray was in the 68th percentile for weight for his gestation, but the ultrasound now showed that he was down to five percent.
“Ray is a fighter, and we are thankful he is because in the minutes, hours and days to follow, it would take being a fighter to survive,” Keely Goettsch, Ray’s mom, reflected.
Ray was born at 8:50 p.m. that evening, after his heart rate dropped. Keely was rushed into the surgery room for an emergency C-section. They would later find out that the umbilical cord was only about a foot long. After Ray was born, he was given a quick kiss by his mom and promptly taken to the NICU (neonatal intensive care unit).
The first time Keely saw Ray, he was sleeping. The NICU doctor came to see him, and he said something that both shocked and scared the family.
“He said that he wanted to do a chromosome test on Ray due to his square forehead and some other traits,” said Keely. “We agreed that we didn’t know much about it!”
Five days later, the preliminary test results came in and Ray was confirmed to have Trisomy 21, better known as Down’s Syndrome. According to Keely, Ray really struggled with his intestinal issues for several days after that. Doctors ran every kind of test they could, and it always ended up with no answer.
Once, Ray got so bad that the family was called to the NICU. Ray was so full of stool that it was coming out of his mouth. Struggling with this for two more weeks, the NICU doctor called Children’s Hospital in Omaha to ask some questions about what to do.
The doctors in Omaha suggested a few things until Ray was strong enough to make it to Omaha for a biopsy. Less than a week from that day, after 46 days in the NICU in Sioux City, Ray was transferred by ambulance to Children’s Hospital to do a biopsy. The biopsy concluded that Ray had Hirshsprungs Disease (a lack of nerves in the intestinal tract).
Keely says of that day, “I can safely say that we were overwhelmed, to say the least; but, looking back, I wouldn’t have had it any other way!”
Once Ray grew strong enough, he got to come home with a lot of medical attention. Ray would have to have surgery for his Hirshsprungs, but he would have to get stronger first.
Keely said she received a call from Northwest AEA Early ACCESS teacher/service coordinator, Brenna Franken, who wanted to evaluate Ray. The family agreed and was so happy to work with the AEA staff.
“These ladies have helped our son, and they have a place in our hearts forever,” explained Keely.
Ray started with Brenna, who helped the family with the simple stuff, like getting Ray on Medicaid, testing his adjusted age and more. She has also helped them through his four surgeries.
As Ray got older, his ability to do more things also grew. He began speech therapy with AEA speech-language pathologist, Amanda Bengtson. Amanda also rode the bus route with Ray from the family’s home to the babysitter’s home after therapy.
AEA physical therapist, Jennifer Kaskey, started to visit him and work on his low muscle tone. AEA occupational therapist, Ann Hardy, also started to work on his feeding. He is now running and is stronger than ever. He also feeds himself which is one of his favorite things to do.
After three years with the AEA in Raymond’s life, it was time to transition to school and he started this last fall. The family had a meeting to get everyone on the same page with Ray.
“The AEA really helped with this transition. Ray is doing so well in school. He loves it so much; and every day, he wants to go to school and ride the bus,” said Keely. “The AEA is still working with him in school and strengthens him day by day. We are so thankful for the AEA. If not for them, we would have lost out on a world with so much to offer our son and his special needs!”
Ray is a fighter and continues to fight every day with a great support system behind him!