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Our Newest Celebrity... Andy
Below is an article that was published in Andy's hometown newspaper. There are also a couple of photos that were published along with the article. Thanks for sharing DA and Andy... we are honored to know such a brave young man! We love you both!
Andy
by: Jim Anderson
Think of someone you know who has problems big, tough, difficulties just getting through life day by day. Chances are, they still couldn't come close to what a 10-year old boy in Robinson faces.
Doctors cant even explain why Andy Dalberg is still alive. But he is more than just alive. Andy's doing a lot of things that, according to everything doctors told his mother, Della, he's not suppose to be able to do.
He wasn't supposed to make it out of the Stormont-Vail intensive care unit 10 and half years ago.
Then he wasn't supposed to live past age 2, then 3. He certainly wasn’t supposed to see his 10th birthday.
He's not supposed to be able to talk, to recognize people, to learn.
Andy is a smart, happy kid, with a big grin as you’ve ever seen, which he flashes often. On a recent Friday afternoon during school time at home, he teases his teacher, Hiawatha special education instructor Lori Flowers.
"I like to mess up." Andy says.
His words are a little hard for someone who has just met him to understand he has to talk around a tube in his throat that connects him to a ventilator.
His grin is contagious. He makes people around him happy. He makes people appreciate life and believe in miracles - miracles that can be made to seem as common as joking around with your little boy.
"He is my hero," his mother Della said. " He's been my life, my breath, my joy for 10 years."
Andy was born with spina bifida, myelomeningocele, a defect caused when a fetus's spine doesn't close properly during the first month of development. Myelomeningocele is the most severe form of the defect and Della jokes that it's in keeping with the way her family does things.
"Andrew's" spine had to be completely exposed, she said. "But that's my family-were going to do it the long way."
Along with spina bifida came a host of other conditions and illnesses.
Andy has an Arnold-Chiari malformation, which affects the area where his brain and spinal cord come together, along with the surrounding bone-the lower rear part of his brain protrudes into his spinal column.
"Its like the brain and spinal cord are kind of fighting for room." Della said.
One of Andy's 29 surgeries was a decompression of the brain to help with the condition -- doctors went in and shaved the base of his skull to make a little more room. He was nine months old.
Andy has hydrocephalus, a condition in which fluid builds up in his head, pressing his brain against his skull. A permanent shunt in his head drains the fluid.
When he was 5, Andy began having seizures. He had 119 in two days and was flown by helicopter to regional hospitals three times during that period. Doctors could find nothing wrong with him, until someone discovered that the shunt, which had continued working, had slipped out of place and was resting against brain tissue.
Andy has a tenancy to aspirate-to suck food into his lungs-so he's fed every four hours through a tube in his stomach. Through the night he's on a feeding pump. He has an abnormally small stomach and, at times, suffers severe acid reflux.
Andy also has scoliosis an abnormal curvature of the spine. He has asthma. He's had pneumonia a lot. He has an extra nonfunctional lobe in his lungs not much of a problem just one more of his little quirks, Della says.
Doctors put Andy on a ventilator a few years ago, when he was having trouble breathing, and he's since grown to depend on it. His next big project is breathing on his own again.
"He stopped working on his own," Della said, leaning towards her son and speaking a little louder than normal. "He just became lazy. But he's under a doctor's order to get off it."
Andy pretends not to hear, but his smile and quick side-ways glance give him away.
Out of every 24 hours his mother is caring for Andy, during the day is Paula Folsom, Paula is Andy's aunt-his dad, Gary Folsom's sister in law. Who is also is a nurse. A team of nurses rotate in one at a time during the night, Mondays through Fridays.
"Its all complicated, but it's very easy," Della said of Andy's care. "After you live with it for so long, you start being able to do it in your sleep. I've never gotten over-stressed, I've never asked why."
It's all very expensive, too. But much of Andy's care is paid through the federal supplemental security income program.
It's feeding and medication time, and Paula begins working on Andy, while his teacher reads to him from, " The Lady with the Alligator Purse."
Andy has the distinction of being the "highest-tech" kid in the northeast Kansas, Della said, meaning he needs the most care.
"If he were in an institution," Paula said, "we're told, it could cost $2 million a year to take care of him. But there's not an institution that would."
Thinking back on her pregnancy, Della said she had no idea there were any complications.
She went into the hospital expecting a normal birth, then was told Andy would have to be born by cesarean section. He was completely breach and his head was lodged in Della's rib cage.
Normally, spina bifida is something of a genetic defect, but not in Andy's case. Della said she did everything right during her pregnancy, took the right vitamins and nutrients and, on paper at least, was not at risk.
She and Gary have two other sons, Phillip 6, and Max, 5 months, both born without complications.
Della was 20 when Andy was born. She said a minister told her that at her age she should consider giving Andy up. She didn't consider it.
When Andy was 6 months old, he was at the University of Kansas Medical Center being treated for pneumonia.
"Three doctors came into the room, sat me down and each gave me an option. One was to let Andy go. The second choice was to place him on a life support machine and let him go slowly, the third was to take him home. She said, "I looked at the doctors and told them to start the discharge because it wasn't Andy's time to go to the Lord just yet."
Della mountains a strong faith in God and Andy does, too.
"He prays all the time," she said. "Look in his eyes and you know there's a God out there - losing your faith is just not an option."
She said she believes Andy is here for a reason. He teaches those who come close to him that life is precious, meant to be cherished and not taken for granted, that maybe their problems aren't that big after all.
"See, Andy is a gift from God, And I will do whatever it takes to give him the best life I can as a parent. Even if it means spoiling him rotten. He has earned that right." Andy has gone through more in 10 years of life than adults can even dream of going through. He is the strongest person I know."
Other than physically, Andy is a typical 10 year old. Della said she and others around him try doing everything as normal as possible. If he gets in trouble, he has a time out just like the other kids.
"I really believe that kids like Andrew, you've got to treat them like normal kids," Della said. "If you come in with a lot of negativity, kids will be negative, But if you're positive, they'll have a more positive outlook."
On Fridays, Andy likes to go to Wal-Mart in Hiawatha, then to Lindy's and to McDonald's for his French fries. "He likes to lick the salt off and then throw the soggy fries at us," Della said.
Andy goes out a lot more since he got his wheelchair three years ago. "Before that, we were always at home," Della said.
The new mobility gave Andy a chance in Dec. 2003 to see a live show at the Sac and Fox Casino, featuring his idol, country singer Buddy Jewell.
Andy also got to meet the singer and the two started a card, letter and e-mail correspondence. "He keeps in touch with Andy and also Buddy's fan club has gotten involved," Della said.
Jewell and his fan club keep Andy up to date on his tours, shows and other events in Nashville, Tenn. The results cover the walls of Andy's room, just like any other 10 year old plastered with photos, posters and memorabilia that he shows off without too much coaxing.
Andy should be a third-grader in his schooling, but he's at a kindergarten level because he got started so late, his teacher said, and has had to work around his frequent illnesses.
"But he can do more than he lets on, " Della said.
She said he's intelligent and has a lot of imagination to go with his sense of humor.
If anything, Andy seems a lot older than he really is, the way he jokes around and teases his mother and other adults, the words he uses. "His whole life has been adults," said his teacher.
When he as littler, Della said the longer the word, the more he wanted to use it. He use to tease one of his night nurses, she said, calling her, "Kleptomaniac." He could speak basic Spanish when he was 2. When he as little before he began to talk, he also knew sign language.
"What do you want to do when you grow up?" Della asks Andy when he's done with the day's schooling. " You want to drive a truck like grampa?" He thinks about that one a little bit, "Hang out with my dad," he says. Andy's future really is a blank slate. He's beaten the odds so far, Della said, and who knows what other miracles will happen.
"Andy has been a miracle from the day he was born. He has shown more progress than anyone could of guessed, so anything with Andy is possible," she said.
"We don't know what tomorrow will bring for Andy. But as long as God allows me to care for him, I will forever take care of him."
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