Monday, January 21, 2013

Community bands together to help this baby born with no arms get new prosthetics...


At 20 weeks pregnant, Brooke and Jim Davis of Spokane, Wash., knew their son, Jameson, would be born without arms months before he would come into this world.
"They basically said the ultrasound was inconclusive, that some things were inconclusive," said Jim."And they left the room and that was it. We didn't know for a week. Were his arms hiding? Were they in a funny position? Did he have any arms whatsoever?"

After a week, a geneticist expert explained to the Davis' that their son would be born a bilateral trans-radial congenital amputee or born without forearms or hands. After two miscarriages, Brooke was excited to finally be carrying for a third time--only to find her son would be born with difficulties.
"I have had a hard time coming to the realization that I will never ever get to hold my child's little hand in mine. I worry about how he will be able to pick up a spoon, a tooth brush, and someday ride a bike. The list goes on," said Brooke. "It was tough information to swallow when they told us he'd be missing the lower parts of his arm."
"He did have arms, he just didn't have any hands or fingers or digits," said Jim. "His arms stopped growing at the end of the humerus bones. He has a bit of soft tissue but no bones past the humorous."
As the first-time parents began to process the news, Jim says doctors wanted to send them to a place in Seattle to "look at their options" but Jim says abortion was "never, ever the answer."
"We turned that news into, 'This is our baby. This is what God gave us and we're going to raise him the best we can,'" said Jim. "For us, that's providing him with the best tools that are available for him to have the fullest life possible."
"We found out that they recommend starting prosthetics as soon as possible," said Brooke. "We decided to go that route and started pursuing prosthetic children's companies."
Throughout the rest of her pregnancy, Brooke and Jim began researching prosthetic options for their son. After a few failed options, Jim eventually found Advanced Arm Dynamics, a Texas clinic that specializes in upper limb prosthetic rehabilitation.
"They were wonderful and they specialize in upper extremity prosthetics," said Brooke. "It seemed like the perfect fit, so to speak."
Upper limb prosthetics for bilateral amputees can vary in price and cost between $10,000 and $25,000. In this instance, Jameson's prosthetics would cost the Davis' $25,000. Their insurance would only cover the cost up to 44 percent. To garner financial support and awareness, Brooke started a blog called, Davis Day 2 Day. The blog features updates on Jameson and a section called Hands for Jameson where visitors can donate to help purchase Jameson prosthetic arms.
"The first set of prosthetics will cost around $25,000. He will need a set every year until he is finished growing and each set will progressively get more expensive," said Brooke on a Nov. blog post. "We are unable to finance that kind of treatment, so we need to raise funds in order to complete our mission."
Brooke says that she and her husband are "on a very important mission to have Jameson fitted for both lower arm and hand prosthesis." She said they will be a "much-needed tool to help give him a better chance at a fuller, more normal life."
Brooke continued blogging and soon set up a donation section called "Hands for Jameson" where visitors can give money through a PayPal system. Once "Hands for Jameson" was posted on the site, the donations began pouring in.
"College friends I hadn't seen in 10 years sent us $200 and local people we've never met started sending money," said Jim. "We had a family mail us $100 and said they didn't need Christmas presents this year and wanted to give that money to Jameson instead of buying presents for each other. The stories go on."
Last year, baby Jameson was born on April 12, in Spokane, Wash. weighing six pounds 13 ounces. With her third pregnancy  Brooke describes the beginning of this one as "a little rocky." Brooke bled daily throughout the first 13 weeks.
"Luckily, it was just one of those things and did not affect the baby. Thank goodness! After that it was smooth sailing," said Brooke. "When we hit 20 weeks our extreme excitement and happiness took an abrupt turn for the worst."
With enough money for a down payment on Jameson's first set of custom-made prosthetics, the Davis' drove seven hours with a teething toddler to Portland, Ore., to AAD's Northwest Center of Excellence. Over the course of three days, the Davis' met and eventually worked with certified prosthetist Mac Juilian Lang to fit baby Jameson who was only six months at the time.
"Jameson is the youngest patient I have personally worked with," said Lang. "I've worked with pediatric patients before but rarely do the parents have the foresight to search out care for their child that soon."
Lang said Jameson's passive arms prosthesis, which only move with the help of his parents, are comprised of three parts including a silicon liner, a socket and frame. Lang explains the liner takes up some of the excess room between Jameson's arm and the prosthetic. The other pieces are a socket and frame, which is the part that goes right up against the liner. "This creates the stability in the prosthetic and is the connection between his arm and the prosthetic." Lang says it's important for the prosthetic to be comfortable and stable "otherwise he won't use it."
"It's rare to have your child missing one hand, it's really rare to have them missing both," said Jim. "We're just giving him the options to do both--use prosthetics now or just his God-given arms later."
Now Jameson is 9 months old and the Davis' say he's hitting all his regular milestones and "uses his short arms just like had fingers." As Jim and Brooke watch Jameson with his first set of prosthesis, they see he's able to hold his toys while exercising hand-eye coordination and balance all while strengthening his back muscles.
When Jameson is about a year and a half old, he will have outgrown his current set of prosthesis. The next set will feature at least one Myoelectric arm, which is a prosthetic that will be fully operated by Jameson himself. His current set are passive arms which must be manually adjusted for him by Jim and Brooke.
In the meantime, the Davis' are planning ahead and organizing fundraising efforts over the following months. Next month, the Davis' will hold an event called High 5's and a Thousand Hearts for Jameson.
"Jameson is beautiful, healthy and perfect in every way to us. We have to look at doing things a little bit differently," said Brooke. "We have to stay positive and be role models for him. I think kids and adults will look up to him and be inspired by him."






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