Robinson family

The Robisons are enjoying the new year together as a family, following a difficult start to 2017 when their daughter, Annaka, underwent a liver transplant. Pictured are Josh and JaLana Robison with their three children, Ellyana (left), Wade (right) and Annaka.

By Kim Jansen

News Report Staff

The past two years has brought many challenges and changes for the Robison family.

But in 2018, they are finding their new normal.

Josh and JaLana Robison, both teachers for the Effingham Unit 40 School District, and their three children, Ellyana, 8, Wade, 6, and Annaka, 2, have been on a journey that has led them all back home and under the same roof, as they celebrate a new year.

The Robison family’s journey began in December 2015, when their daughter Annaka was born with omphalocele, where her small intestines were growing outside her body. After a surgery and a few weeks of healing, Annaka was released from the hospital and was able to come home.

However, in February of 2016, it was discovered that Annaka had biliary atresia, a rare liver disease, that would lead to a liver transplant surgery in January 2017. A close family friend of the Robisons, Nancy Ervin, was a liver match for Annaka and donated a portion of her liver.

Following the liver transplant, Annaka spent three months recovering at the hospital in Pittsburgh, where her mother and grandmother watched over her, before she was able to return home in April.

A year following Annaka’s liver transplant surgery, Josh and JaLana are very thankful of where their family is today.

“Overall, from a surgery standpoint, she is doing about as good as possible,” said Josh, who added Annika goes in for blood tests every two weeks to have different levels checked.

Although her new liver is functioning properly, the side effects from the medicines she is taking, as a result of the transplant, have led to Annaka having numerous food allergies, including dairy and eggs, to name a few.

“This has actually been the big issue for us right now,” said Josh of the allergens. “We still keep track of the liver, but really the struggle for us is to feed her.”

The Robisons have to be careful not to expose Annaka to any of the allergens because doing so would create an emergency situation for their daughter.

Josh said there is a chance she will outgrow most of allergies as she ages and her anti-rejection medicine is decreased.

“We are hoping she will outgrow most of them,” said Josh. “But, there are no guarantees. It might be something she deals with her whole life. It is too early to tell.”

Annaka is scheduled for one more surgery this spring in Pittsburgh where doctors will reconnect her abdominal wall and muscles, which the doctors were unable to do during the liver transplant because the donor liver was so large compared to Annaka.

“The surgery will not be as invasive and won’t be quite as bad,” said Josh, adding she is likely to be home in just a few weeks after the surgery. “Ideally, she will not have any more surgeries; not for this anyway.”

Although Annaka has faced serious medical issues, the now 2-year-old girl is mostly like other 2-year-olds, although she currently receives speech therapy and occupational therapy once a week.

“She has made really good improvements since they have been working with her, but she is still delayed when compared to the average 2-year-old, particularly when it comes to her speech,” said Josh. “You can tell she still has a hard time enunciating a lot of words and articulating exactly what she is trying to convey.”

But Annaka is expected to be caught up by the time she reaches kindergarten.

“It is too early to tell what kind of accommodations she will need as she gets older,” said Josh. “The big thing we will continue to be concerned about is keeping her from being exposed to allergens.”

For now, the family enjoys being under the same roof and looks forward to living life together.

“Last year at this time, the surgery was over, but my wife, my wife’s mother and Annaka had to stay in Pittsburgh for about three months. So I was at home with my other two kids,” said Josh.

Josh would travel to Pittsburgh every weekend, or every other weekend, so the family could be together.

“That was difficult,” said Josh. “It was hard to be separated from them for such a long period of time and to know they were going through the recovery period in Pittsburgh. That was tough.

“Now we have everyone under the same roof, and we are at that point where we are starting to take that part for granted again. It has become the new normal — being together again.”

After the past few years with Annaka, Josh and JaLana look at life a bit differently now.

“It was really eye-opening at first because raising kids is hard. But we didn’t realize how relatively easy our other two were to raise because they didn’t have any health issues,” said Josh. “We didn’t realize how blessed we were with those two. With Annaka, there are a lot of challenges, even now.”

Josh said one of the family’s goals for 2018 is to find meals they can eat together as a family.

“For the five of us to be able to sit around the supper table at the same time and eat the same food would be remarkable,” said Josh. “It is something that doesn’t sound like that big of a deal, but it can be kind of frustrating.

“Annaka is so limited on what she can eat, it is a real challenge for the five of us to be able to sit down and eat at the same time,” he added. “In 2018, if we could figure out three or four meals where we can all sit at the same time and eat the same thing, that would be great.”

The Robisons continue to be thankful for the support they have received from the community.

“I can’t imagine going through something like this by ourselves without the close knit family support and that close knit community support. It has been very helpful,” said Josh. “That is just the kind of community Effingham is and the kind of people we are surrounded with.”

As Annka continues to thrive, the Robisons count their blessings and are thankful, and surprised, by Annaka, who Josh describes as his happiest kid.

“We continue to thank God every day for what he has blessed us with,” said Josh. “Annaka continues to teach us to appreciate what we do have because she is never upset. She is always reminding us to find the bright side of everything and to smile.”