Jennifer Steines still seeks a diagnosis for her 6-year-old who contracted a virus that invaded her brain. Heres 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 Kaitlyns 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. Its 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 Roscoes Anna Marias.
Im 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. Were 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?
Ive 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 cant (Kaitlyn) be better? Why did my mom have to die? But I thank God every day for all the happiness in my life. Its 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. Its all about stem cell rejuvenation. Your body starts repairing. It doesnt have side effects. Weve tried so many other things…its not going to hurt her.
Jennifer hopes the diet will repair some of Kaitlyns 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.
Kaitlyns 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 thats what every other doctor said.
Is it possible to reverse the brain damage?
If you tell me no, you wont be a part of my life.
The doctor says we wont know how well she can do until the seizures stop.
Im hoping this nutritional supplement will give her body what it needs to heal. She smiles at me and responds to me. Thats huge. She is definitely communicating.
How long did it take to accept this?
Its hard. In this last six months, Ive come to terms with…I have to handicap everything. Everything. Shes getting bigger. Its been a reality check, Jennifer said, tearfully. We have to start planning for the future. I mean Im strong, but Im worried. What if my back goes out? I have a mini van. Im 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. Its to the point that…shes 50 pounds.
You are very positive, I said.
I dont want to make it sound like Im a peach. My husband can tell you I have my bad days. I just really think lifes too short. I just dont like to dwell on the negative.
Jennifers sister has planned a fund-raiser Oct. 23. Interested people can visit www.careforkaitlyn.com. 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