How does it feel to be the parent of your child?
Lucy came into our lives rather unexpectedly. She was born 6 weeks premature and her birth was a very difficult one. The doctors believe she was without oxygen for an extended period of time. When Lucy turned 6 months old, we realized that her movements were abnormal and she favored one side of her body. She was diagnosed with Spastic Cerebral Palsy. We were devastated to learn that our perfect little girl would not be able to run and play like other children. We were also surprised to find out that nearly two children out of every thousand born in the United States have some form of cerebral palsy. Although there is no cure for Cerebral Palsy, Lucy is expected to have a normal life span. The only thing we can do is become her advocates and offer her as full of a life as we possibly can.
Lucy came into our lives rather unexpectedly. She was born 6 weeks premature and her birth was a very difficult one. The doctors believe she was without oxygen for an extended period of time. When Lucy turned 6 months old, we realized that her movements were abnormal and she favored one side of her body. She was diagnosed with Spastic Cerebral Palsy. We were devastated to learn that our perfect little girl would not be able to run and play like other children. We were also surprised to find out that nearly two children out of every thousand born in the United States have some form of cerebral palsy. Although there is no cure for Cerebral Palsy, Lucy is expected to have a normal life span. The only thing we can do is become her advocates and offer her as full of a life as we possibly can.
How is your child developmentally the same or different from other children at the various ages?
Lucy is an extremely bright and social child who excels academically. Her challenge is a physical one. "Cerebral" refers to the brain and "Palsy" to a disorder of movement or posture. Children diagnosed with Cerebral Palsy have an inability to fully control motor function, more specifically muscle control and coordination. Lucy has been diagnosed with Spastic CP which is the most common type of cerebral palsy. It causes the muscles to be stiff and permanently contracted. Spastic cerebral palsy is often subclassified as one of five types that describe the affected limbs. Lucy suffers from Hemiplegia which affects the limbs on only one side of the body. She walks with a walker and often tires from compensating for the side that has been affected.
What professionals/agencies do you deal with? What services are available to you and your child?
Lucy has quite a few health care professionals on her team. Her pediatric neurologist leads a group of professionals that include:
- An Orthopedist who treats her for muscle, tendon, and bone problems.
- A Physical therapist that works with her to improve her movement and strength.
- An Occupational therapist to help Lucy learn life skills.
How did you find out about the above services?
A Social worker assists our family in obtaining community assistance, education, and training programs. As Lucy's advocates, her father and I do extensive research on the internet and have joined the local Cerebral Palsy support group.
Please visit my PortaPortal for further resources at Cerebral Palsy Resources
Please visit my PortaPortal for further resources at Cerebral Palsy Resources
What financial burden, if any, are you experiencing?
Medical costs are the primary expenses in raising a child with Cerebral Palsy. Fortunately, our family has wonderful health benefits that cover a majority of Lucy's medical expenses. Although it covers most of Lucy's care, there are many fees that we are responsible for. We have had to make modifications to our home and vehicle in order to better accommodate Lucy's needs.
Medical costs are the primary expenses in raising a child with Cerebral Palsy. Fortunately, our family has wonderful health benefits that cover a majority of Lucy's medical expenses. Although it covers most of Lucy's care, there are many fees that we are responsible for. We have had to make modifications to our home and vehicle in order to better accommodate Lucy's needs.
What other information do you want to share?
The most important thing for a parent of a child with Cerebral Palsy is to become educated. One way to do this is ask as many questions as possible. This is a link to a thorough list of questions a parent of a child with Cerebral Palsy needs to ask their doctor: Questions for the Doctor
Please visit my Glog for additional information as well: Cerebral Palsy
The most important thing for a parent of a child with Cerebral Palsy is to become educated. One way to do this is ask as many questions as possible. This is a link to a thorough list of questions a parent of a child with Cerebral Palsy needs to ask their doctor: Questions for the Doctor
Please visit my Glog for additional information as well: Cerebral Palsy
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