Joey Is 'Big-Time Better,' Thanks to Children's
By Bob Levey
Washington Post Staff Writer
Tuesday, December 3, 2002; Page C10
Each year, during our holiday-season‚ fundraising campaign on behalf of Children's Hospital, we meet patients who are doing far better than they once were, thanks to the Children's staff. A 4-year-old from Montgomery County is one of the favorite success stories at Children's. My assistant, Samantha Ganey, has the story:
Joey Lora knows he is Mr. Personality. "I'm sweet," the 4-year-old said. "I'm adorable."
"And what else are you, Joey?" prompted his mother, Sandy Lora.
He paused and announced a little louder, "I'm handsome."
What Joey doesn't know is that he's disabled on his right side. Joey had five surgeries between his first and second birthdays. More of the left side of his brain was removed each time. The majority of it is now gone.
But his left arm is all the greeting power Joey needs. When he shakes your hand, you can't wait to hear what he's going to say.
What you'll never hear is Joey being upset over his epilepsy. "He never cried or complained," his mother said of his extended stays at Children's Hospital. "It's just so amazing to see that."
On July 20, 1999, when Joey was 9 months old, he awoke at 5:30 a.m. at the family's home in Silver Spring with a racing heart and shortness of breath. His parents said his eyes were fluttering and he was losing consciousness.
When he lost consciousness again at Holy Cross Hospital later that day, a chaplain came downstairs and baptized him, because his parents had not held the ceremony yet. Doctors were not sure whether Joey was going to live.
"I was hysterical. I couldn't even stand on my two feet," Joey's mother remembers. Children's Hospital neurologist Steven Weinstein came to Holy Cross that night. He has been working with the Loras ever since.
Abnormal brain waves were detected on the left side of Joey's brain. For 22 days, Joey was in Children's. Joey was put in the pediatric intensive care unit after having a seizure that lasted about an hour. During this time, doctors tried different combinations of medicines and dosages. In the end, Joey was given adult dosages because he has an unusually high metabolism.
Some medications would diminish his seizures for a day, others for only an hour. Even so, "I felt very safe for him there," said Joey's father, Albert, owner of a catering company, about the intensive care unit.
At one point, Joey's mother slept beside him in his crib so she could feel "his aura" as the seizures were coming on. Joey was having five to six every 30 minutes. During most seizures, he held his breath until his lips turned blue. Dr. Weinstein said that Joey's heart was in jeopardy because his seizures were lasting so long.
"He had them more than every day, more than every hour. At his worst, he was having them nonstop," Dr. Weinstein said.
Joey was having seizures when he arrived at Children's on January 11, 2000. On January 14th, Joey was put into the PICU to await his first brain surgery on January 18, 2000. Even after his third surgery 13 days later, Joey still could not live with his seizures, as many patients can.
"After that surgery, the seizures kept taunting him," his dad said.
In the middle of his fourth surgery, which lasted 12 hours, Joey's doctors recommended a hemispherectomy, the removal of the left side of Joey's brain, which was the side causing the seizures. But they still couldn't be sure how the right side of the brain would function.
Three weeks after being home seizure-free, Joey was having seizures again. On Oct. 4, 2000, Joey had a fifth operation. This time, doctors performed a corpus colosodomy which completely separated the left and right hemispheres of his brain.
"After the last surgery, by and large, there was a dramatic decrease in his seizures. By how much? Ninety-nine percent," Dr. Weinstein said. "Is Joey any better than anybody had envisioned? Big-time better. Everything has gone right for him."
| Joey's Scrapbook |
| He's 5 and the apple of our eye - see family photos - learn about his therapy sessions |
| Joey's Schedule |
| Joey is Poster Child for Children's Hospital - check his appearances |
| Fun for Kids |
| Print and Color - Discover your world |
| Help for Parents |
| There is a world of seizure and epilepsy information on the Internet - We've some helpful references listed here |
| Joey Lora Fund for Children |
| The "Joey Lora Fund" money goes to benefit the areas of the hospital that are responsible for Joey's success and the future successes of other children like him. |
| Home Page |
| Special Links here for Joey's Song / Joey's Poem / Washington Post Article on Joey |
| Joey's Guestbook |
| Please be sure to sign Joey's Guestbook!! |
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|
Joey and Mom Enjoying the Playground |
His mother said doctors think "his social skills are out of this world. That has totally floored them." But Joey's learning capabilities are
still not where they should be for a 4-year-old.
In addition, Joey can't use his right hand. He wears a brace and a strap on his right leg to pull it inward, and he has no peripheral vision on the right side of either eye.
Joey still has seizures every day. His mom said he taps her and says, "Mommy, Mommy. I seize." And then he is right back to playing. Mr. Personality doesn't let his deficits stop him.
"My goal is for him to live as normal a life as possible and have a wife and kids. We can't baby him. We treat him like a normal kid, just like his siblings," said Sandy Lora.
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