Elijah was born in August of 2002 after a complicated high risk pregnancy. He is an identical twin to Joshua and
was born at 35 weeks gestation after I was put on 2 months of complete bedrest at 26 weeks gestation. I learned
after a routine ultrasound that Elijah had developed hydrocephalus - I went into preterm labor the next day and subsequently
found out after being transported to a Boston, MA hospital that he had suffered a Grade IV Intraventricular Hemorrhage
(an intrauterine hemorrhagic stroke) at about 24 weeks gestation for no known reason. As a result of his stroke,
Elijah has Right Hemiparetic Cerebral Palsy and congenital hydrocephalus. His journey has not been easy, but he has
defied the odds time and time again. Doctors said he would never walk, communicate or feed himself. He would be
confined to a wheelchair, on a feeding tube, need communication devices to speak for him...well at 5 years old, he walks,
runs, hops, talks up a storm, feeds himself (although a bit messy at times :-)) and more. He is an absolute joy to be
around with his infectious smile. A true inspiration to all who meet him!!!
Elijah receives therapy through the local school district (he's in Kindergarten - where did the last 5 years go?!).
He has Physical Therapy once a week (not enough in mom's opinion!), Occupational Therapy twice a week and Speech Therapy
twice a week. He is monitored monthly by a Vision Specialist for suspected field cut weakness. He
will be seeing an OT at Childrens Hospital Boston soon to be evaluated for Constraint Therapy for his right hand/arm.
He has a history of seizures, although at this time his doctors do not want to medicate him. He also has a programmable
VP shunt to treat his hydrocephalus. We have experienced a few complications as a result of his shunt. He now
has to be in a magnet free environment because we have found that any type of magnet, not just MRI's, can adjust the valve
setting. This happened to him approximately 6 months after having the shunt placed in 2004 causing him to suffer a significant
subdural hematoma. He wears an AFO (Ankle Foot Orthotic) on his right foot and a McKie Thumb Abductor Splint on right
thumb to help keep his right thumb from tucking into his palm. He also wears a night time AFO to stretch his gastroc
muscles while he sleeps. He is starting to show a leg length discrepancy and the starting stages of scoliosis.
He also developed muscular kyphosis (low muscle tone in his trunk muscles) which contribute to his slouching posture.
He is also being evaluated by a neuropsychologist in the near future to help us determine how he learns best and help
us advocate for the supports he needs educationally and beyond.
Do I wish that Elijah didn't have to deal with all he does - ABSOLUTELY! More importantly, I know that if it
weren't for the stroke, he nor I would be who we are today! Now that Elijah is school age, there are so many answers
we wish we could have. As so many families affected by pediatric stroke feel, there are so many unknowns when it comes
to the affects of pediatric stroke: educationally, socially, emotionally, and physically....thus the dire need for more stroke
research geared towards the children who have survived....treatments, rehabilitation and causes of adult stroke differ so
much from that for children.
Thank you God, for allowing me to be the mother of such a wonderful boy and for trusting that I would be the best parent
for him!
Dawn Marie Perkins
