It’s about 2,400 miles from Salt Lake City to Boston. But it’s a distance Jennifer and Vincent Ramirez are more than happy to travel to get care for their daughter Eva. The family first traveled to Boston Children’s Hospital in January of 2016 for surgery to remove Eva’s encephalocele — a surgery her doctors in Utah had said wasn’t possible.
For this visit, Jennifer and Vincent had decided to bring along their two older children, Violet, 7, and Vincent, 5, and make a family vacation of the trip, catching a Red Sox game and spending a slightly chilly day at the beach.
We caught up with Eva and her family at the end of their week to see how Eva is doing.
Slow but steady progress
“She’s just really content and happy, even with everything she’s gone through,” says Jennifer. “She’s the easiest baby ever.”
As her surgeons in Boston predicted, Eva is behind on meeting her milestones. But with intense physical therapy, along with vision therapy and feeding therapy, she’s made progress.
“She has better neck control and is learning to stand with help,” says Vincent. “We just want to see how far she can go. If we didn’t come to Boston, she wouldn’t be here. When we were at home, they said she wasn’t going to make it. That’s why we keep coming back here to Boston. It’s a long trip, but they gave her a chance and we’ll always come back.”
The couple mark each of Eva’s milestones with gratitude and awe. “When Eva does something it’s a huge deal for us,” says Vincent. “Just the other day, she got into a crawling position for a minute. She should have done that months ago, but we’re like ‘Man, she’s actually doing that!’”
Finding a new ‘normal’
Like any other baby, Eva loves playing with toys, but because of her poor vision, she prefers those that light up or make sounds. A singing glowworm is her current favorite.
“She loves music of any kind,” says Jennifer. “She’ll just sit and listen. And on the rare occasions when she’s fussy, music calms her down.”
Eva also enjoys long walks outside and snuggling, especially with her older brother and sister, and sometimes gives kisses.
“Despite everything, we have a ‘normal’ now,” says Jennifer. “We know that things with Eva could change overnight, but we can’t worry about that. We’re just happy with what we have. Happy she’s here.”
Learn more about Boston Children’s Craniofacial Program.