Lunch with Marjorie: The five minutes that changed her world, part two

Jennifer Steines still seeks a diagnosis for her 6-year-old who contracted a virus that invaded her brain. Here’s Part Two of her journey.

Jennifer Steines grew up in Chicago. She thought she would teach business, but opted to be a stay-at-home mom. This choice became crucial when her daughter Kaitlyn’s care became a round-the-clock necessity.

“How did you feel about putting your career aside?” I asked.

“How do I feel?” she laughed at the thought. “It’s always with the financial struggles. I really enjoyed being home. I looked forward to seeing my mom every day when I came home from school.”

We were enjoying tortellini at Roscoe’s Anna Maria’s.

“I’m a sauce person,” I confessed.

“Me, too,” she said. “I dip everything. This is delicious.”

“You made a conscious choice to be at home.”

“Oh, yeah. My husband was the same way. We’re both firm believers in that…no matter where we had to sacrifice. We only had one car for the longest time.”

“Did you feel sorry for yourself?”

“I’ve always been one of those…my glass is half full. No matter how bad things get, you have a choice to be happy. I wake up every morning…there are moments when I think, ‘God, why can’t (Kaitlyn) be better? Why did my mom have to die?’ But I thank God every day for all the happiness in my life. It’s about relationships.”

When Kaitlyn got sick, Jennifer read about a neurosurgeon, one of the top five in the country.

“I sent him documentation to see if he had seen anything like this. I never heard back from him. Then he had prostate cancer, went on this diet, and now no longer has cancer. It works with sugars in your body…glyconutrition,” she said, boned up on the literature. “You have trillions and trillions of cells in your body that communicate…through sugar. It’s all about stem cell rejuvenation. Your body starts repairing. It doesn’t have side effects. We’ve tried so many other things…it’s not going to hurt her.”

Jennifer hopes the diet will repair some of Kaitlyn’s brain damage.

“If I could go back and do it again…I wish I had contacted a person who had had a child who had seizures right away. We were starting to go from A to Z. We should have gone straight to F and cut out half the…we tried six medications only to watch her seizures get worse and worse. That wasted valuable time. Meanwhile, she was losing all her skills. She quit walking, talking. If we had been able to stop the seizures faster, she might not have lost all of that. She was seizing all day long.”

Kaitlyn’s seizures have slowed. Her brain is processing now.

“They found the right medication?”

“Probably our eighth drug. The side effects were so minimal.”

After two years going from hospital to hospital with no progress, they found help at Rush Epilepsy Center in Chicago.

“I knew he was the right (doctor). He looked at me as a parent. He was willing to…have an open mind and try things, not in this chronological order because that’s what every other doctor said.”

“Is it possible to reverse the brain damage?”

“If you tell me no, you won’t be a part of my life.”

“The doctor says we won’t know how well she can do until the seizures stop.”

“I’m hoping this nutritional supplement will give her body what it needs to heal. She smiles at me and responds to me. That’s huge. She is definitely communicating.”

“How long did it take to accept this?”

“It’s hard. In this last six months, I’ve come to terms with…I have to handicap everything. Everything. She’s getting bigger. It’s been a reality check,” Jennifer said, tearfully. “We have to start planning for the future. I mean I’m strong, but I’m worried. What if my back goes out? I have a mini van. I’m trying to get (her new chair) in…and the aide is watching me. I was laughing. I wanted to just shove it in. I really have to get a handicap-accessible van. We only have one bathroom, where I put her chair, and then I lift her. It’s to the point that…she’s 50 pounds.”

“You are very positive,” I said.

“I don’t want to make it sound like I’m a peach. My husband can tell you I have my bad days. I just really think life’s too short. I just don’t like to dwell on the negative.”

Jennifer’s sister has planned a fund-raiser Oct. 23. Interested people can visit Neighbors, friends and family have purchased wristbands to help with the handicap bathroom, van, and equipment not covered by insurance.

From the Oct. 19-25, 2005, issue

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