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Don't forget to join Team "Baby Beau Stevenson" and mark your calendars for May 21. That is when the March for Babies is going to take place. Start your fund raising now!! We want to see you there!!

Beau ties this family together

By Kerri Sandaine of the Tribune

Lewiston couple rejoice in joys and challenges of raising sweet-natured son who was born with Down syndrome

Kyle and Alaina Stevenson's journey began in high school.

They started dating as teenagers in St. Maries, fell in love and got married six years ago. They dreamed of having a baby and, after five years of trying to get pregnant, the young Lewiston couple's wish came true.

At the time, they had no idea how many surprises and challenges were in store for them.

Their son, Beau, was born almost three months early with Down syndrome. He has undergone major surgery and spent 99 days in a neonatal intensive care unit at a Spokane hospital. He's fed through a tube in his stomach. Some days go better than others.

"It's a challenge, but it's worth it," says Alaina, as she holds her smiling baby boy.

Today Beau will celebrate his first Easter. As the Stevensons reflect on the past 10 months of his life, they remember the tears, shock and joys they've experienced.

"I look back now and feel so blessed to have him as our son," his mother says. "He makes us laugh every day. How could we not be thankful?"

The Stevensons say their strong relationship has helped them handle the ups and downs of caring for a premature and special-needs child.

"We're good as a team," Kyle says. "We also have a great support system of family, friends and co-workers."

Kyle, 28, is an information systems analyst at Clearwater Paper, and Alaina, 27, teaches kindergarten at Centennial Elementary School in Lewiston.

The Stevensons are the ambassador family for the local March of Dimes fundraiser, which will be conducted at 10 a.m. May 1 at Kiwanis Park in Lewiston. Money raised at the walk is used to improve the health of babies through helping mothers have healthy, full-term pregnancies.

Alaina's pregnancy ended with an emergency C-section after she was flown to Spokane because of complications. She and Kyle didn't know their baby had Down syndrome, although an ultrasound at 15 weeks had shown markers.

"At her second ultrasound, the doctors ruled everything out, so it was a real roller-coaster," Kyle recalls. "We went back at 20 weeks and they were still saying everything looks good. We didn't have amniocentesis because it was risky and we were going to keep him no matter what."

Down syndrome, also called Trisomy 21, is a condition in which extra genetic material causes delays in the way a child develops, both mentally and physically. It affects about 1 in every 800 babies.

On May 27, Beau was born, weighing 3 pounds, 3 ounces at 29 weeks gestation. "I just remember praying that he would weigh over 3 pounds," Alaina says.

She instantly knew her baby had Down syndrome, but Kyle says he was in denial at first.

Because he was premature and suffered various health issues, Beau had major problems with feedings and apnea. His parents spent a lot of time at the Ronald McDonald House in Spokane and went through many tough days during their son's hospitalization.

"At first, we wanted to go back to our normal lives," Kyle says. "Now we wonder how we could've even thought that. A counselor at the hospital told us she would've been worried if we didn't go through that thought process."

They broke the news of Beau's birth on their blog and still keep family and friends updated through the Web site. "That's pretty much how we told people he had Down syndrome," Kyle says. "We put everything out there on the blog. It's been a huge help. We've met so many families with Down syndrome. There's a whole community."

Many people have been touched by the family's story and photographs. Blog followers get a taste of daily life at the Stevenson household and the challenges of feeding time.

Beau had fundoplication surgery to help him with his severe acid reflux, and he can't burp or throw up because of the surgical procedure. When he gags, his parents plug in a vent tube to help release the air in his stomach.

"We can't leave home without this," Kyle says, holding the plastic tube.

The feeding tube will be removed when Beau can eat solids. He can't be fed with a bottle because he doesn't have a suck reflex.

"It's the hardest thing in the world to teach someone to swallow," Kyle says with a laugh. "I've sucked on the spoon. I've sang songs about it. I've tried everything."

Alaina and the baby bounce on an exercise ball during his feedings. She says the movement helps him through the process, which can be an ordeal.

Because of the tube, he can't go to day care. A nurse comes to the house while Alaina teaches half a day. The in-home care is covered by Medicaid through the Katie Beckett Program for children with disabilities.

Beau's development has been a bit slow because of his premature birth, but he now weighs close to 18 pounds and he's catching up in size to other babies his age. He rolls over, he's trying to talk and he pushes things away.

And every day, he brings a smile to his parents' faces.

"He's my son," Kyle says proudly. "I'll do whatever it takes to provide him the best life possible. His smile is contagious and I couldn't imagine life without him."

"I came back from Spokane a changed person," Alaina says. "I'm more sympathetic for other families going through this. Sometimes we still wonder why it all happened, but he's teaching us so much - not only us, our families, friends and co-workers. We love baby Beau and his designer genes."

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On the Net: Kyle and Alaina's blog is at www.alainakylestevenson.blogspot.com

March of Dimes information is available at www.marchforbabies.org