Ruth is our first and only child. Although she seemed fine at birth, the doctors quickly realized that she was anything but. Ruth was unable to suck and swallow and experienced dangerous episodes of apnea. She was placed in the NICU and examined by a myriad of specialists ranging from infectious diseases to genetics, and everything in between. Severe congenital hypotonia, sometimes called rag doll or floppy baby syndrome, was their conclusion. Her muscle tone was so low that Ruth was unable to swallow or keep her lungs properly inflated. She required the surgical insertion of a gastrostomy port into her stomach known as a MiKey button, allowing her to be pump fed. After seven weeks we were finally able to take her home along with an assortment of fun and flashy medical devices to which
she remained tethered.
Three days later Ruth went into respiratory failure and was admitted to the PICU at Children’s. We then spent the next eighteen months in and out of the PICU. Frequent visits made Ruth quite popular with the nurses. At two months of age, Ruth contracted Respiratory Syncytial Virus (RSV) and became so ill that she had to be placed on full life support. After three weeks on the vent, she came home, but with a full blown addiction to Fentanyl, an opiate 50-100 times more powerful than morphine. We spent the next month weaning her with methadone and Ativan. It was certainly not an experience we expected for our newborn.
Ruth required supplemental oxygen for a very long time.
Leaving the house meant dragging the O2 tank, feeding
pump, apnea monitor, and pulse oximeter along with us.
Because of the severity of the hypotonia, Ruth was unable to sit up until 18 months. She was eventually able to use a walker and took her first unassisted steps at 27 months.
Her neurologist said he’d only seen two other cases of hypotonia as severe as hers, and those children never walked or talked.
When she was two years old, Ruth’s speech therapist suggested we look at Capitol School. Ruth was dealing with both gross and fine motor delays as well as oral-motor and feeding problems at the time and her therapist believed CSA would be a great starting point. We enrolled Ruth in Language Stim with a wonderful teacher, Maggie Peiffer. We were so impressed with the unique and individualized care given to each child and by Maggie’s ability to work with Ruth’s special physical needs. Despite Capitol’s focus on language and learning differences, the school has the exceptional ability to address and support many other special needs. At first we thought CSA would be a short-term need for Ruth, but it quickly became apparent that we’d found the ideal place. Ruth was able to thrive in the small setting and was finally able to effectively interact with her peers.
Life dealt my sweet girl another blow at age four when my husband, Geoffrey, passed away quite suddenly and unexpectedly. The staff and teachers at CSA provided incredible support for both Ruth and me during that very difficult time. I was concerned that this would cause a significant setback in her progress, but Ruth’s teachers ensured that her daily routines were maintained and made things as “normal” for her as possible.
Ruth was diagnosed with ADD in 2012 and its severity made it difficult for her to learn. Though the medication made a tremendous difference in Ruth’s ability to work more independently, much of the credit must go to her teacher. Sharon English has been remarkably patient with her while continually challenging and pushing beyond her boundaries, both academically and socially. Some of Ruth’s greatest challenges now are with age appropriate behavior and social skills. CSA continues to address and support those needs.
This is Ruth’s eighth year at Capitol. I cannot imagine that any other school could have successfully served her unusual set of challenges. She simply would not have made the same progress anywhere else and would likely have been lost in the shuffle. That’s one of the things I love about CSA-they don’t employ the one size fits all approach but are instead able to cater to the specific needs of each child. Ruth is truly a miracle baby, surpassing every single one of the doctors’ grim predictions. She has been off the feeding pump now for three years and continues to flourish. While she still struggles with emotional and behavioral delays, I feel confident that CSA has given her the essential foundation for future success.