Bringing Up Brooke: Raising a Daughter with Dwarfism

Life at Home

For months after Brooke was born, I was juggling health appointments, fighting with the insurance company for in-home nursing help (I couldn't use regular baby-sitters because Brooke's neck required special handling), and getting back to my job as a project coordinator for the engineering group at Kraft. My coworkers and boss were great; I was allowed to work part-time and from home. Tony, who lives in Wisconsin, came to many appointments with us and continues to see Brooke every week. He has been incredibly supportive. Family members who live near me were also a big source of support during those stressful first months.

Brooke is developing well both mentally and physically, though she is small for 30 months and people frequently mistake her for a much younger child. A year ago, she had the surgery to enlarge her foramen magnum, which was scary for Tony and me, especially because she developed a dangerously high fever right after the operation. But she's fine now, and doctors say the surgery was a success. She has a spine curvature called kyphosis in her lower back, which means that all her chairs have to be reclined to a 120 degree angle so she can sit comfortably. She's also learning to walk but probably won't be fully mobile until she's nearly 3 years old. This frustrates her, but she's got a strong will, and I know that before long she'll be running around just like other children.

In the meantime, she's learning new things every day. She loves looking at books and photo albums and listening to stories. One of our favorite things is snuggling up on the couch to watch Blue's Clues on TV. Dr. Pauli says I'm somewhat overprotective, and I agree with him. I do want to help Brooke become as independent as possible, but I still worry about her health.

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