My son was born in April 1993. I had a normal pregnancy until the end when he did a u-turn and got himself stuck in the breech position. This resulted in a Caesarian delivery. He was so tangled up in his cord and his head was stuck under my diaphragm. The doctors wrestles him out and my husband and I were the proud parents of a son. what and adventure this boy would take us on.
Seventeen days after our son's birth he would be hospitalized for viral encephalitis. He would spend three weeks at the local children's hospital for treatment. The prognosis was Grim. I can still remember the pediatrician I had chosen calling us by phone at the nurses station to break the horrible news to us.
A neurologist came to speak with us. He was matter of fact and pretty realistic bout how things would go for our son during his stay. To have him tell us he was likely to be disabled from the illness was a blow. But like many parents you don't want to believe that about your child.
F developed seizures during that first night. He nearly coded. They started him on anticonvulsants along with an antiviral drug. He had a feeding tube places through his nose to his stomach because he'd stopped eating. As the antiviral drugs began to help he became more and more stable.
He was released from that hospital ray on Mother's day. What a gift that was. We took F home. When I think about how naive we were then. That first illness didn't really prepare us for the road ahead. There would be many more challenges to come.
Starting with the crying…all that crying! It pierced my heart and my ears! I used to call the neurologist be cry that my son NEVER slept. If he did sleep he'd startle himself awake. Little did we know that was a seizure called infantile spasms. This was an extremely challenging summer. After starting steroid injections for the seizures and changing medications the crying improved some.
F had sensory issues and back then no one really addressed them with us. We'd notice certain sounds and environments were challenging for and overwhelming for him. Looking back he needed a sensory diet to help his nervous system. We would learn about sensory diet many years later have F suffers a femur fracture and do to being unable to get out of bed, pain medications, and probably the whole traumatic experience he began showing symptoms similar to those when he was younger. An occupational therapist would explain to us it was sensory overload and taught us the sensory diet. It really worked to.
F prior to his first birthday will also have surgery for gastrostomy (g-tube) placement, nissen fundoplication, and pyloroplasty. All to help with feeding and pneumonia related reflux. That was a tough procedure, but we got through it. This first year was hard and challenging, but when I look back at it I'd say it was hard and challenging because you get placed on a fast learning curve and your just naive new parents doing the best you can with a unique child so unique you meet only one family who has one similar in ability, lack of.
In a nutshell, looking back that first neurologist, who I still call my friend, painted the bleakest picture possible for F's future. He turned out to be absolutely correct about most things. Life is challenging for F. He is SEVERELY disabled. He is however "nerd" smart as his paraeducator puts it. He is an untapped resource and if he had expressive language that could pull some of that amazing knowledge out of his head who knows what could be possible. You just never know what life will give any individual. You just never know what life will give any of us. F is an inspiration and I can learn daily from his example in patience, forgiveness, and compassion. I sure love that kid and would trade most of our experiences together, not even that traumatic first year.
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