Meet Oksana and Oliana

This story was written by Carolyn Kates, a veteran physical therapist who has been part of the Boyer Children’s Clinic team for over 30 years. She has been honored to work with the Phan family since they were connected with Boyer. The Phans speak only Vietnamese, and live in subsidized housing in South Seattle with their twin daughters and Mrs. Phan’s mother, who emigrated from Vietnam to help support her daughter, son-in-law, and offer care for the children. Boyer provides interpreter services at no cost to the family, and due to Oksana’s severely compromised physical state, Oksana received all her care – physical therapy, speech-language therapy, and special education services - in their South Beacon Hill townhome for their entire time at Boyer.

Twins Oksana and Oliana Phan were born six weeks early, at 34 weeks. From the beginning, Oksana had a more difficult time than her sister. She was born with a small hole in her heart, called ventriculo-septal defect. Four months after birth, doctors placed a gastrostomy feeding tube, then an additional Farrell bag for drainage.

For two years, Oksana would vomit at least seven times per day. She was in and out of the hospital with pneumonia and other respiratory problems, and by her first birthday she required oxygen at night. Her family was then devastated to learn that her bones were not mineralized; she was diagnosed with severe osteoporosis. Her doctors were puzzled, and several consultations were made to discover the cause. Oksana was in tremendous pain and spent a year of her life crying constantly and not wanting to be touched. About six months later her bones began to break, resulting in seven fractures, two in her spine. The doctors at Seattle Children’s put her on excessive calcium and phosphate supplements. Emily Myers, MD, followed both girls both at Seattle Children’s, as well as at Boyer, where she serves as Medical Director.

Oksana was never able to attend Boyer’s preschool program – which many children do beginning at 18 months - because of the feeding tubes, the oxygen, and her pain and crying. At 2.5 years of age, she was only rolling to one side and uncomfortable sitting.

However, once the calcium and phosphate supplements began to work, minimizing her pain and strengthening her body, Oksana began to flourish. As a result of her physical therapy, within a six month period she was able to move in and out of sitting by herself, crawl across a floor, and pull to kneeling.

Now, at nearly three years old, Oksana has made remarkable progress. She is starting to take weight on her legs for short periods of time. She wants to crawl and explore all the time, and her family has placed barriers around the room to keep her safe. Oksana can only crawl the length of her tubes, but her mother will follow her with the bags and tubes to let her explore. Her family was persistent and never gave up on her.

Gradually the vomiting stopped, and Oksana’s mother was able to feed her by mouth, something she had not experienced since an infant. Now she is able to eat ¾ cup pureed foods per day by her mouth. The doctors at Seattle Children’s are hopeful that, in the future, Oksana will not need a feeding tube.

Oksana could never have come this far without her family’s constant love and support. They have given Oksana round-the-clock care to ensure that she is healthy, comfortable, and continues to grow and thrive, all while caring for her twin sister. They have always been there, steadfast, nurturing her back to health.

Next month, Oksana and Oliana will turn three years old, “graduate” from Boyer, and with the assistance of Boyer’s Family Resources Coordinator, Karen Rio, the girls are set to attend a preschool program through the Seattle Public Schools. The family was thrilled to learn that Oliana will be able to join her sister, riding the school bus and participating in the same program.

Addendum from the Phan family: “We were so scared in the beginning, now we are not scared, we have hope. Thank you so much for all of your help and support for us this far. Without Boyer, she would not have come this far. We do not have words to express the appreciation we have.”

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