YOUR STORY

My child is disabled; here is what our life is like.

On January 13, 2015, Evan was laughing so hard that he aspirated, falling unconscious; resulting in 90 minutes of CPR and an anoxic brain injury. Evan has damage to the basal ganglia and occipital lobes. He spent two and a half weeks in the PICU at INOVA Fairfax Hospital, during which the goal was to heal his lungs. By the end of the first 24 hours of his stay, he wasn't doing well – not well enough to survive and not well enough for the pulmonologist to determine what was causing his lungs to fail. Thankfully, the medical team decided to go ahead and do a bronchoscopy to see what was happening… The ENT extracted raw carrots from his lungs. Evan had eaten carrot sticks with dinner – approximately two hours before aspirating. Evan was put in a medically induced coma for several days and his body was cooled to preserve whatever brain function remained. After he was warmed to normal body temperature, an MRI was completed to assess the damage. When Evan's lungs were completely healed, he received a gastronomy tube and two days later we left the PICU to go to Kennedy Krieger Institute. Evan was in-patient there for six weeks and received two-three sessions daily of OT, PT, Speech and Recreational Therapies. Evan was discharged for "making minimal progress" and deemed in a "minimally conscious state." He was much calmer and content at home and started therapies a week later. Prior to this injury, Evan was a typically developing, very active toddler.

 

Anyone who meets Evan and spends just a few minutes with him can easily tell that he is happy, smart, perceptive, sensitive, stubborn and overall, truly "gets it."   His cognition and personality are two abilities that he did not lose with his injury.  He is very aware of his environment.   Evan responds and reacts to his surroundings with facial expressions and vocalizations.   His reactions to new situations are appropriate.  Evan enjoys socializing with other children and is responsive to their words and actions.   At times, Evan will vocalize certain words.    Although inconsistent, when Evan does say these words, it is clear and appropriate.   

 

Evan enjoys being included in all daily activities – no matter what or where.  He loves going places – be it the grocery store, a park, restaurant, movies, museums, etc.  Evan very much enjoys learning and experiencing new things.    In addition to attending school full time and therapy after school each day, Evan enjoys participating in Cub Scouts, baseball, and Sunday School at our synagogue.    Recently, Evan, along with his mom, has started learning to play the violin. This is a hand-over-hand joint effort that encourages his love for the symphony and use of his arms.

 

Evan LOVES School.   He is in a Multiple Disabilities class and spends time in a second grade (general education) class with his peers.   His favorite subjects are reading and music.  Evan receives OT, PT, Speech, Feeding and Hippotherapy outside of school.   He also participates in an adaptive aquatics class on the weekends.   On a daily basis, Evan uses the following equipment (besides his wheelchair): prone stander, activity chair, gait trainer, sleep-safe bed, chill out chair, bean bag, wheelchair-accessible van and a communication device.   He also has gym mats to lay on for stretching, rolling, tummy time, etc.    Evan wears Dynamic AFOs daily to help stretch and support his legs.  

 

Evan is seen on a regular basis by many physicians/specialists including Pediatrician, Neurologist, Gastroenterologist, G-Tube Nurse Practitioner, Neuro-Opthalmologist, Ear Nose & Throat, Physical Medicine & Rehabilitation, Orthopedic Surgeon. Evan gets his nutrition via g-tube with tube feeding formula. He is progressing with eating by mouth and currently will eat up to ¼ cup of a puree-type food (i.e. pudding, applesauce, etc.)

 

We have learned a lot medically over a 7-year period since the accident.  Kids are resilient.  He continues to improve each and every day and the resources provided for him by people out there are what is motivating each and every day to wake up in the morning.  Life goes on and you deal with it.  You can't change the past and can only focus on what today brings, then tomorrow, and so on. I have learned Dads play a huge role in a family, and it truly is the bond that keeps us together.  Dads are sometimes left out of having support as many of us are normally working max hours while moms stay at home. We need our voices heard as well. 

"The difference between a successful person and others is not lack of strength, not a lack of knowledge but rather a lack of will." 

-Vince Lombardi