The Amazing Ezra
At 30 weeks pregnant Ezras mom and dad were so excited to see their baby boy and see how hes grown since the last ultrasound; and what they thought would be just a routine appointment turned into the day that changed their lives forever. The staff words haunt his mom Jessica forever – “theres some extra fluid around his brain buts its probably nothing and the specialist is going to laugh at us for sending you but its better safe than sorry.”
Well the perinatal specialist did not laugh and instead after and hour and a half ultrasound told the family that Ezra had suffered a stroke in utero and has severe brain damage and scarring on the right side of his brain. There was no explanation as to why, what happened or what that would mean when is born. With the hemorrhage happening in utero there was a chance that his brain could rewire itself and bypass the damaged parts but his entire life would be a “wait and see” to see how the damage would effect his life. Ezra has been poked and stuck so many times hes basically a pro at getting his blood drawn. He has seen numerous specialist to determine what the cause of his hemorrhage was and still 6 years later we have no explanation. Ezra was diagnosed with Cerebral Palsy, Infantile Spasms and Epilepsy.
The first year with Infantile Spasms was terrifying. He was put on a steroid treatment for a month straight with numerous overnight stays in the hospital to ensure that his brain was able to handle the medicine. The damaged part of Ezras brain tries to have seizures but thankfully with the help of medicine and the nondamaged side of his braining stopping any full seizures to develop! Ezra requires constant support physically via a wheelchair, support bath chair, Gait Trainer and Ankle Foot Orthotics.
Ezra currently goes to All Children.s Hospital for regular therapy to hopefully one day walk independently with the assistance of a Gait Trainer. He regularly gets Botox injections as his cerebral palsy causes his muscles to be incredibly tight and at times painful. He will be seeing a specialist in the upcoming months to determine if he will need a surgery or another intervention method to protect his hips that are beginning to displace due to the tension in his muscles. He also attends a school tailored for special needs children which has been such a BLESSING.
He is non verbal but absolutely not non communicative! Man can that kid express himself! He is a RAY of SUNSHINE; he has a smile that can light up the darkest room. Dispute his frustration when he cant communicate what he needs or move his body physically the way he wants he is such a happy child. Ezra loves dogs like LOVES them! At this point everyone in his family can recite every word to the first 6 seasons of Blues Clues and every version of Clifford the Big Red Dog! This journey has been difficult; but he is so loved and supported. Ezras mom and dad decided to get a divorce so that doubled the needs of equipment and difficulties transporting equipment but what it also did was double the experiences, double the love and double the family that Ezra gets!
Moving forward Ezra will need more adaptive equipment to make his life as comfortable and convenient as possible. And with larger and more equipment comes needs for larger vehicles, hitches on existing vehicles and new challenges that we cant predict. Our hope is that Ezra is able to enjoy life to the fullest and not miss out on any “typical” experiences due to his disability. Currently when you say “I love you” he responds with a kiss one day we hope to hear the words I love you either from him or his eye gaze speaking machine!