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'Whatever recovery we get we can call a miracle'

July 31, 2005|By BONNIE H. BRECHBILL

bonnieb@herald-mail.com

The scene in the Ruppenthal/Munson household at first glance seems typical.

Sixteen-year-old Rachel Munson is working on a scrapbook, 13-year-old Alex Munson is sprawled in the recliner watching cartoons, and 8-year-old Dallas Ruppenthal is playing Game Boy. Two pet chinchillas sleep in a cage.

But the children's mother, Billi Ruppenthal, is adjusting a feeding tube hanging from a pole beside the recliner. And the woman sitting at the dining room table is a nurse making notes in a chart.

In school last October, after complaining of a headache, Alex, then 12, experienced a bleed in the right side of his brain due to an arteriovenous malformation. The initial bleed and subsequent strokes caused brain damage.

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After numerous surgeries - at least five for shunt revision - crises, setbacks, and renal failure, Alex returned to his family's home in the woods of southern Fulton County, Pa., June 21.

And what a homecoming it was.

Alex was transported in an ambulance, and as it came through nearby Hancock, he received a police escort. The ambulance attendant lifted Alex's stretcher so he could see out. "Welcome home" signs could be seen all over the town, and people stood out on the street waving. Cars blew their horns.

"Alex grinned all the way through Hancock. He was so happy to be home," his mother said.

"He needs to be in a family environment, not in bed with a nurse hanging over him," she added. "Alex is not critically ill; he warrants a nurse because of his condition and his tracheostomy. We laugh and have fun and go to malls and out for ice cream."

The former Little League player, who now wears splints on his legs to prevent foot drop, participates in family life as much as he can. He recently made the first sound that resembled a word, saying "Uh-huh" twice when stepfather Brian Ruppenthal told him to.

When his mother asked, "Are you my boy?" he nodded vigorously.

But some changes in the family were inevitable.

Alex sleeps in a hospital bed in a large room that his grandfather created out of two smaller rooms. Closets hold large quantities of medical supplies. Rachel no longer has a bedroom and sleeps on the couch.

Rachel, who will be a junior in high school this fall, shows her brother the chinchillas and helps with his care when she isn't working at the local Park-N-Dine. She deftly switched the valve on his trach on a recent afternoon.

Alex's classmates at Southern Fulton High School applied to the "Extreme Makeover: Home Edition" television show on the family's behalf. Ruppenthal said she wants a therapy room, and when they suggested a video arcade room to Alex, "he really brightened up," she said.

Remodeling the basement for Rachel is also on the family's wish list.

Alex was a huge fan of video games, Ruppenthal said.

"He would take a shower with a Game Boy in his hand. We had to take the games away from him during school. I'd give anything to have to do that again."

But she doesn't look back often. "I go forward every day and accept what's here," Ruppenthal said. "I feel I'm dealing with a child who is trapped inside his body, not a person who is brain-damaged."

She dislikes people "treating Alex like a patient. He has his own personality. He's a great kid."

Alex brightens when his friends call and he hears them on the speakerphone, she said. His sweet smile and expressive brown eyes communicate his feelings.

Pediatric neurosurgeon Dr. Benjamin Carson performed Alex's surgeries at Johns Hopkins Children's Center in Baltimore. "Everyone looks at him as a celebrity," Ruppenthal said. "I don't. He's Alex's doctor. He's so humble, so down-to-earth. And he was the only doctor who looked at me and said, 'It's going to be OK.'"

After Alex's second surgery, Ruppenthal was told by another doctor that her son was brain dead. Later, Dr. Carson told her, "Your son is not brain dead. It's going to take a long time, but keep saying your prayers and don't lose hope."

Ruppenthal's hope has been rewarded. Alex laughs, cries and nods appropriately in response to others. "He understands everything we say," Ruppenthal said.

Nonverbal communication will be the focus at school this fall, when he will learn to use a picture board. He'll attend a Life Skills class at Southern Fulton High School.

While his mother is thrilled he can attend his former school again, she has some concerns. "His head worries me the most. His head has to be protected."

Alex is still missing a bone flap on the right side of his head; his brain is covered only by his scalp, which is deeply indented. He wears a helmet when he's in the wheelchair.

While the piece of skull eventually will be put back in, for now Ruppenthal is content to have it out. She can easily tell when he has an infection, she said, because the indented place starts to puff out.

Alex's recovery will be slow, due to the depth of the brain damage from the initial bleed and the subsequent strokes. "Whatever recovery we get we can call a miracle. He's home. That's a miracle," his mother said.

Surgery is scheduled for Aug. 26 for the placement of a pump that will drip a drug into Alex's spinal column to help control his high muscle tone.

Sometimes, Dallas lies on the edge of his brother's recliner and plays his Game Boy or arm-wrestles with him. The brothers had shared a room and often played cards and PlayStation together.

"He misses his playmate," Ruppenthal said.

She wants to start a support group for parents of children with disabilities similar to Alex's. "Most of everything I know, I learned from other parents," she said.

Anyone interested in a support group may contact Ruppenthal at brupp@nb.net.

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