Childhood Stroke: One Day at a Time

At daycare, my niece plays in the park with other kids.

Playing with Ben.

Enjoying the slide at the park near her school.

Chasing the ball at East Hill Farm, NH.

My sister refrains from planning too far in the future. She prefers to embrace life with my niece one day at a time. Sometimes, she cannot help but worry about how she will cope with her disability as she gets older. Nonetheless, she remains hopeful. “I will always be proud of her no matter what she chooses to do with her life.”

For more information about Childhood Stroke, here is the fact sheet.

Childhood Stroke: The Affected Hand

At age one, her right hand was always clenched to a fist and held close to her body.

At age 3, her hand started to open but her thumb was always behind her other fingers. Her arm was bent causing stiffness to her limb.

She wears an orthotic brace at night.

At age 6, she can grasp medium to large objects but always with the help of her left hand. Her wrist remains limp but she has more strength in her arm. Regular therapy also helps lessen its stiffness.

Childhood Stroke: A Visit to the Neurologist

Elevator ride to the Department of Neurology at Children's Hospital Boston.

Dr. Adre DuPlessis examines my niece.

“I've always been optimistic about her.” he said. “I think she will be okay. The only thing we have to watch out for is seizures. They might occur at a later time but that is a small percentage.”

This was their last appointment with Dr. DuPlessis. It was time to refer my niece to another neurologist since he specializes in treating children from newborns up to three years of age. My sister held back tears. She thanked him and said goodbye. She later confided that among all the doctors that spoke to her after she gave birth, he was the one that showed the most concern.

Childhood Stroke Awareness Month

My niece, three weeks after coming home from the hospital.

My sister comforting my niece after her blood test. This was to check the phenobarbital levels in her blood stream to prevent seizures.

Check up with Dr. McCarthy.

Physical and Occupational Therapists from the Early Intervention Program at the Guidance Center are evaluating her visual and perceptual skills.

Eight years ago, my niece had a stroke on the left side of her brain just a few hours after she was born. The nurses rushed her to the NICU (Neonatal Intensive Care Unit) where the doctors quickly worked to stabilize her condition. She was closely monitored for a week to make sure seizures were under control. A panel of doctors sat in front of my sister a few days later to report their prognosis. The cause of the stroke was inconclusive and they were vague on the long term effects of her condition. My sister was so distraught knowing she was faced with an uncertain future. With a heavy heart, she took her daughter home. It was a very difficult time but we all pulled together as a family.

My niece is hemiparetic which means she has weakness in the right side of her body due to the stroke. Her right hand was most affected. Her fine motor skills are impaired and therefore will need life long therapy to maximize mobility. Thanks to the Early Intervention Program and the therapy sessions offered by her school, she is is doing well.

Further research is needed by the medical community in perinatal and childhood stroke to identify risk factors and eventually determine the best treatment and prevention. For further information, please visit the Childhood Hemiplegia and Stroke Association website.

Birthday Party



Magnolia Bakery at Columbus Avenue, NYC
About 15 kids sat around the table wearing self decorated paper chef hats. They chatted away while adorning their cupcakes with an assortment of colored sprinkles. Boxes were given out so they could take some home. Then they ate pizza. My niece blew out the candles on her birthday cake and everyone had a slice. When the party ended, I took this photograph right before the staff at the bakery cleared the table.

 

 

Tweenager




New York, April 2008

My niece gave me a big hug as soon as I walked in the door to my sister's apartment. I bent over and wrapped my arms around her. Last time we saw each other was in July of last year. It seemed like she had grown a few more inches.

She is now a full fledged tweenager. Her room is filled with High School Musical posters. She just started reading chapter books but they are of Hannah Montana's adventures. Where did all the Nancy Drew and Hardy Boys mystery books go?? She knows more about hair and make-up than I did when I was her age.

Time is truly flying at warp speed.



Niece

Oakland Zoo, 2006.

I will be traveling to New York this weekend for my niece's birthday. She turns 8. From the time she was born, my siblings and I made a commitment to get together every year for her birthday. I wish we lived closer to each other. It's sad to know that I cannot be there to experience her life as she grows up. Instead, I find comfort in capturing moments such as this on every visit.