Save on Medications

CLATSKANIE, Ore. — Angie Grover, who will be three on May 6, does not really know that she is sick.

That each days starts with her foster mother giving her four different seizure medications followed by “breakfast” – a special formula – fed to her through a tube in her abdomen – is just how it goes. It’s her daily routine.

“She does eat some food,” says her foster mother, Kara Harris of Clatskanie. “But she cannot drink formula because she has a history of aspiration, resulting in repeated pneumonias.”

Angie has Sturge-Weber Syndrome, a rare genetic disorder that causes glaucoma, developmental delay, seizures and progressive brain injury.

Harris, with her husband Toby, has been a foster parent since February 2000, having cared for some 33 foster kids as well as three biological children and two adopted kids. They have cared for Angie since she was born.

Because of the disease, Angie, whose day ends as it begins – with medications and feeding through a tube – gets early intervention services in the Harris’s home. She is seen by vision and hearing specialists, an occupational therapist, a speech therapist, a physical therapist and a special education teacher.

“We recently had to take her out of daycare on the instructions of her doctors because each illness she gets triggers more seizures,” Harris says. They also recently stopped taking her to outpatient speech and occupational therapy at Emmanuel.

“Insurance only pays for a certain amount of visits a year,” says Harris. “And we need to save visits for later in the year.”

“It sounds like a lot,” Harris says. “But it’s the way it is. It’s routine. We try and make it seem as normal as possible.Her condition is worsening and she now is suffering small strokes about every two weeks.”

One thing that will help the situation is surgery.

She had been scheduled to have a hemispherectomy, a type of brain surgery that’s kind of a last resort when medications fail to stop seizures. It’s not always effective but, Harris says, it was what Angie’s doctors thought was her best bet.

“We have not talked to her about the surgery because she does not have the ability to understand,” Harris wrote in her blog a couple of weeks ago. “But she knows she is getting a ‘haircut’ and she talks about that, while patting her head.”

Days later, though, things got bad.

“We received devastating news today,” Harris wrote. “One of Angie’s surgeons had to go on medical leave and her surgery will have to be canceled.

“I just cannot make sense of the endless delays and complications we have encountered trying to get help for our little angel. Maybe tomorrow will bring good news.”

For Harris and Angie. the next few days brought a mixed bag.

Seattle Children’s Hospital – one of the only places in the region capable of performing the surgery – has agreed to help Angie. What remains is for the hospital and officials from Oregon Health Authority, which provides Angie’s insurance, to agree on payment.

That has been a bit of a stumbling block but a spokeswoman from the Oregon Health Authority assures KGW the situation will be resolved.

“We are working to make sure that she receives the care she needs,” said the spokeswoman, Patty Wentz. “Everyone is working to make this happen.”

In the meantime, Harris says she is waiting, praying and trying to keep the life of her family as normal as possible – doing things like taking her daughter shopping for a prom dress on Saturday.

And, Harris says, she has an amazing family that is there for her every step of the way.

“My mother–in-law cares for Angie while I work part time at an early intervention center in Longview,” she says. “She drives 40 minutes each way from her house so Angie and her can play, learn, go to the park, go out to lunch and cuddle.”

“Angie has an amazing team of people working on her treatment,” says Harris. “She could not be in better hands.and I believe the outcome will eventually be proven to be worth the wait.”

Not every story has a happy ending. Maybe this one will.

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