Tuesday, March 25, 2014

Cerebral Palsy Awareness 2014

Today is Cerebral Palsy awareness day. Something I knew very little about up until a few years ago.

November 24, 2011. Sarah received a diagnosis of cerebral palsy, which was likely caused by oxygen deprivation early on in my pregnancy. Up until this point, I'd only heard of that term and on that day, it became personal. Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different. They also found that there is "periventricular white matter", consistent with "periventricular gliosis", WHICH as I understood, was the cause of her balance issues. Over the past few years, Sarah's balance has become more stable, although she is much more "stumblier" than other kids her age. We still tend to wince as she runs around corners or walks past the corner of the counter top. 

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time. (Cited from here)

What is Cerebral Palsy?

- While cerebral palsy is a blanket term commonly referred to as CP and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing before birth, during birth, or immediately after birth. 
- Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.
- Current research suggests the majority of cerebral palsy cases result from abnormal brain development or brain injury prior to birth or during labor and delivery.
- An individual with cerebral palsy will likely show signs of physical impairment. However, the type of movement disorder, the location and number of limbs involved, as well as the extent of impairment, will vary from one individual to another. It can affect arms, legs, and even the face; it can affect one limb, several, or all.
- Cerebral palsy affects muscles and a person’s ability to control them. Muscles can contract too much, too little, or all at the same time. Limbs can be stiff and forced into painful, awkward positions. Fluctuating muscle contractions can make limbs tremble, shake, or writhe.
- Balance, posture, and coordination can also be affected by cerebral palsy. Tasks such as walking, sitting, or tying shoes may be difficult for some, while others might have difficulty grasping objects.
- Other complications, such as intellectual impairment, seizures, and vision or hearing impairment also commonly accompany cerebral palsy.

Cerebral palsy is non-life-threatening: With the exception of children born with a severe case, cerebral palsy is considered to be a non-life-threatening condition. Most children with cerebral palsy are expected to live well into adulthood.
Cerebral palsy is incurable: Cerebral palsy is damage to the brain that cannot currently be fixed. Treatment and therapy help manage effects on the body.
Cerebral palsy is non-progressive: The brain lesion is the result of a one-time brain injury and will not produce further degeneration of the brain.
Cerebral palsy is permanent: The injury and damage to the brain is permanent. The brain does not heal as other parts of the body might. Because of this, the cerebral palsy itself will not change for better or worse during a person’s lifetime. On the other hand, associative conditions may improve or worsen over time.
Cerebral palsy is not contagious; it is not communicable: In the majority of cases, cerebral palsy is caused by damage to the developing brain. Brain damage is not spread through human contact. However, a person can intentionally or unintentionally increase the likelihood a child will develop cerebral palsy through abuse, accidents, medical malpractice, negligence, or the spread of a bacterial or viral infection.
Cerebral palsy is manageable: The impairment caused by cerebral palsy is manageable. In other words, treatment, therapy, surgery, medications and assistive technology can help maximize independence, reduce barriers, increase inclusion and thus lead to an enhanced quality-of-life.
Cerebral palsy is chronic: The effects of cerebral palsy are long-term, not temporary. An individual diagnosed with cerebral palsy will have the condition for their entire life.

**All information on this post was taken directly from MY CHILD.  I do not claim any part of this is as my own** 

There are many different degrees of cerebral palsy, with a large spectrum. Sarah falls on the mild end. Most of her delays are caused by the severe microcephaly while the CP causes her balance to be off a bit. I think it is also the cause of her weaker muscle tone in her legs and why she drags her toes when she walks. 

I have gone through a lot of moments of grief and sadness over the past two years. Some days, I'm still really sad that she will never catch up to her peers, and rather the gap will continue to increase. They will get further and further ahead and while Sarah will develop, it will be at a much slower pace than them. I am sad for what opportunities she may not have and I worry about how others treat her, especially since she acts so much younger than five.

It only takes a glimpse of her and her amazingly contagious smile to see what a blessing she is to me. She is almost always joyful. She shines with happiness and frequently checks in with her family with a "Are you happy?" She is easy to please and loves life. As long as there is Curious George, her baby, bananas and pink cheerios, then that's all that matters in her little world. I am blessed!

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