For the first time, 5-year-old J got to open a Christmas gift picked out and wrapped just for him. And like most kids, he found just as much joy — if not more — in popping the bubble wrap insulating the toy.
The last few days have been full of firsts for J — feeling a wet dog tongue, touching sand, chewing Cheerios — and the next three weeks will be full of many more firsts before the little boy has to return to the Chinese orphanage where he lives.
Felida residents Amanda Giese and Gary Walters brought J, as they call him, to the U.S. to spend the holidays with their family. (The adoption agency prohibits the use of his legal name.) They’ve also lined up appointments with several medical, vision and dental specialists so J can receive evaluations for the first time.
J’s most obvious medical issue is arhinia, which essentially means he was born without a nose. He’s also facing some other medical issues — none of which have stopped J from being an active, energetic and curious little boy.
“He doesn’t know any different,” Giese said. “He’s happy the way he is.”
Giese hopes J’s stay in the U.S. will provide more understanding about his medical issues and, ultimately, lead to a loving family adopting him.
“He’s an amazing kid,” Walters said.
Complex needs
Giese had been looking into adopting or fostering children in hospice care through the state foster care system. Fostering hospice children had long been a dream and passion of Giese’s, and now that her own children are older, she felt like she was finally in the position to take that step. But then Giese came across a Facebook post about little J and his medical issues.
“He’s right up my alley,” Giese said. “I thought, ‘I can do this.'”
Caring for those with complex medical needs isn’t new for Giese. Ten years ago she founded Panda Paws Rescue, a nonprofit rescue specializing in major medical, special needs and hospice care for dogs.
Giese reached out to Great Wall China Adoption, which was facilitating J’s trip to the U.S., and inquired about fostering the boy for the four-week visit. She had only four days before the deadline to complete the requirements and necessary paperwork.
“I just worked 18 to 20 hours a day to get him a visa and get him to America,” Giese said. “He wasn’t going to stay in the orphanage for the holidays.”
On Thursday, Giese greeted J at Portland International Airport. They connected immediately, showering each other with kisses.
“He’s very, very friendly,” Giese said, “and extremely affectionate.”
After a few days of getting familiar with each other, Giese and J this week began a rigorous schedule of appointments with specialists to determine the extent of his medical issues.
Giese started a GoFundMe page to raise money to pay the out-of-pocket costs for all of J’s appointments. They’ve nearly reached their original goal of $10,000, so Giese upped the goal to $45,000. The extra money will be used to help cover the roughly $35,000 in adoption fees facing prospective families.
While the arhinia is J’s most obvious medical issue, it’s not the most pressing.
The highest priority for J is surgery to correct undescended testicles, Giese said. Without the procedure, J is at higher risk for complications and testicular cancer. He also has a perforated eardrum that will need to be surgically repaired when he’s a few years older, she said.
With the arhinia, J will need several expensive diagnostic tests to determine how developed his olfactory system is, which would reveal whether surgery could restore his sense of smell. Not much is known about the condition because it’s so rare; only 44 cases have been documented worldwide.
J also has underdeveloped, small eyeballs. Giese hopes an appointment with a specialist at Oregon Health & Science University’s Casey Eye Institute will determine whether any of his vision can be restored.
J won’t undergo any surgeries while he’s here. His temporary visa is only for four weeks, and the recovery time for surgeries is too long. But the information gathered during these visits will be valuable for the adoption agency and J’s future family, Giese said.
In addition to the medical issues, J has some speech and education delays. But those, Giese said, are due to lack of nurture and exposure, not any intellectual disabilities. J doesn’t go to school or receive any therapies at the orphanage, she said.
“He’s not disabled in any way,” Giese said. “He’s just differently abled.”
‘Everyone can do something’
Because J predominantly relies on his sense of touch, he loves textures, Giese said. He’s had fun playing with Kinetic sand, playdough and paint, she said.
He also likes things that vibrate — he’s been exploring an electric toothbrush lately — as well as any type of music.
He’s enjoyed trying new foods and taking showers and baths.
“He’s got the best personality of any kiddo,” Giese said. “The medical is all fixable.”
In addition to getting J the needed medical evaluations, Giese hopes to find a family to adopt the boy. While she and Walters considered adopting J, Giese decided to keep her efforts focused on advocacy.
“Yes, I can give him an amazing home,” she said. “But then I can’t do that for the next or the next or the next.”
Giese hopes to continue providing temporary foster care for children — whether from the U.S. or other countries — who have medical needs that may be hindering adoption. She wants to advocate for the kids who may not have anyone else advocating for them.
“Everyone can do something,” she said. “And this is what I can do.”
