Ryland entered this world screaming and kicking! When my husband and I saw him for the first time our hearts smiled. He was everything that we thought he would be; happy and healthy.
During normal newborn screenings, Ryland failed his hearing test twice at the hospital. The doctors assured me that since he was delivered via c-section he probably had a bunch of fluid in his ears and told me not to worry because hearing loss is rare. Six weeks after bringing Ryland home, we had an ABR done to test his hearing. The results of the ABR broke my heart. I was told that my baby was profoundly deaf in both of his ears. At that point I was devastated. I remember calling my husband, in tears, mumbling the words “THEY SAID HE CAN’T HEAR”. The days, and weeks to follow were hard. I withdrew myself and didn’t want to face the reality that MY BABY WAS DEAF.
Although I was quite distraught when I got the news, I acted fast. I contacted early intervention and got him enrolled at St. Joseph’s Institute for the Deaf right away. He was fitted for hearing aids and they were activated when he was just 3 months old. My husband and I were excited about Ryland’s hearing aid activation and at that point we had gotten over what we thought to be the worst time of our lives and we began to embrace the fact that our son was deaf. We looked forward to all of his mapping and booth testing appointments and we thought he looked so cute with his blue hearing aids. Shortly after his First Birthday he received his first cochlear implant and received the second one a year later.
Soon after we came to accept Ryland’s hearing loss, I began to notice that his development wasn’t quite what it should be for a 3 month old baby and he was extremely underweight. His eyes had crossed all of a sudden and stayed that way and he still had very poor head control. I expressed my concerns with his doctor who assured me that Ryland was fine and he didn’t see a need to worry at that point. Months passed and during a check-up when Ryland was 5 month’s old, I demanded answers. I remember sitting in the doctor’s office crying my eyes out, looking at my baby, wondering what was wrong with him. I was afraid of the unknown.
During that appointment, Ryland was admitted to the hospital for about 6 days. He was seen by Neurology, GI, Genetics, Physical Therapists, Feeding Teams and many more specialists. They performed a slew of blood tests related to genetics and other conditions, ultra sounds, x-rays, and an MRI. ALL NORMAL! While that was a relief, it still didn’t give me any answers. I WANTED ANSWERS. It was determined that Ryland needed a feeding tube so that he could receive adequate nutrition. The feeding tube was placed and we were discharged. We still had so many questions, yet no one could give us the answers.
Ryland had eye surgery to correct his strabismus when he was 6 months old and he began physical therapy, occupational therapy and feeding therapy shortly after. Although Ryland has very little control of his movements, he is happy and he tries his best to make strides. He can’t yet sit unassisted but I see him getting stronger and better by the day.
Ryland finally received a clinical diagnosis after extensive genetics testing in 2016. we found out that it is extremely rare and caused each of his side effects including hearing loss, strabismus, dystonia, delayed development, speech delay and intellectual disability.
Ryland has made great progress with the help of his therapists and medical equipment and I know that he will continue to thrive. I know that there’s a long road ahead of us but I also know that God doesn’t make mistakes.
Ryland enjoys watching his sisters and friends ride their bikes and I am hoping that we are able to get Ryland a bike of his own soon so that he can join in on the fun!
:- By Ryland’s mom