Corey’s Story

I’m honored to be sharing Corey’s story and give you a small glimpse of Corey’s journey with SETBP1. If you were able to meet him today, you would see the happiest, most determined and one of a kind little boy. His first year of life did not go as we had planned, but we have learned so much and will stop at nothing to help him achieve a better quality of life.

At his 2 month appointment, we expressed concerns with his pediatrician about his inability to lift his head on his own. We decided to give him more time and would check in at his 4 month appointment. I can still feel my heart drop like it did on that day when I heard his pediatrician say, “I am concerned about Corey.” We were referred to a Neurologist who ordered several tests and recommended physical therapy right away. At 7 months old, we were given the diagnosis of SETBP1 Disorder.

Through further testing we identified that Corey was aspirating and immediately started thickening his liquids. We recently started seeing an Occupational Therapist and Speech Therapist duo specifically for feeding therapy. Their strategy is to address the whole child’s foundational development, so we are working on crawling in a way that properly engages his core, sensory tactile play, and maintaining proper positioning for safe eating. In a few short meetings, we realized that Corey has sensory processing issues mainly revolving around touch and taste, so we are using techniques to provide sensory input in which he has been responding well. The only downside that we have noticed is trouble getting him to bed and entering his first sleep cycle and waking around 3am and not getting into his final sleep cycle. We are hoping this is a phase as we “wake” his sensory system and are told that he may sleep better down the road. Up until this point Corey has been a very good sleeper.

While being home during quarantine, we have seen significant improvement for Corey due to a lot of one on one time. He started sitting while supported around 10 months but at 14 months he still is not able to sit independently due to his weak core muscles. He started to army crawl at 12 months and he is loving the ability to move around the room especially if his sister, Olivia, is close by to play.

Another big area of improvement we have seen is his vocal play. He started making “mama” and “baba” sounds around 11 months but then there was not much babble again until recently. During that period, we were doing a lot of physical therapy, pushing him to work hard and it was difficult to add babbling on top of the tasks his brain was telling his body to perform (rolling over, proper sitting while eating, “in and out” play, etc.). With Occupational and Speech Therapy, we are now seeing an increase in his babbling while doing some of those difficult tasks. We are hearing “w”, “m”, “p” and “n” sounds.

It is our hope that as we achieve small wins for Corey, we are able to provide what’s needed to keep our boy happy and healthy. We are unsure of what the future holds for him but we are so blessed to be chosen to help him along his journey.
…“The Noonan Family is a SETBP1 family living in Nebraska”…

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