As we head back to school this week, I am reminded yet again of the truly amazing team of physicians, therapists, teachers, and babysitters that surround Zella daily. Thanks to their encouragement, in the last few weeks of summer Zella has hit milestones we never believed she would reach, namely walking. Simultaneously she has struggled with new self-injurious behavior, but team Z has pulled through and everyone is working hard to cooperatively manage these new challenges. Zella is loving her new preschool program at Apparo Academy. Teachers and staff have already gone above and beyond to make her feel right at home in her new space. If it takes a village to raise a child, it takes a sprawling metropolis to raise a child with ADNP syndrome. The only way to fully recognize the ... [Read More]
Helsmoortel-van der Aa syndrome
Zella the Zebra…Fish
ADNP syndrome has stolen so much from our girl. At nearly 4.5 years old although she can chug along slowly with a walker, Zella is still unable to walk independently. She has a handful of approximations and signs, but we fear she may never utter a single word. Zella still can not scoop food onto a spoon to feed herself. She is not and may never be potty trained. Fatigue overwhelms her body.Frustration overcomes her mind.Milestones are never met on time, or at all... until now. Despite our initial assumption that she would never swim without a flotation device, Zella is defying us all and swimming independently at 4 years old. (My apologies for the toplessness...this is how we roll in the backyard). We could not be more thrilled with Zella's progress ... [Read More]
