Saturday, March 2, 2013

March is Cerebral Palsy Awareness Month

"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."

Stepping back in time to November 24, 2011...  Together, Doug and I went to Sarah's appointment to follow up from the MRI that was done a week or so before.  I am so thankful that his job at the time, allowed him the flexibility to attend this one with me.  I couldn't have done it alone.  We were told that 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 understand, is the cause of her balance issues. 

All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy.   

And now...
Today, she is still Sarah.  No more, no less.  She is still the sweet little girl that she was even without a diagnosis.  She loves Curious George, Harry Potter (you should see what her big sister has taught her!), pink cheerios, bananas, water and her people.  In addition to her immediate family, Grandma, Lucy, Ben, Rosie and "Auntie 'Eesha" are among the ones we hear the most about. She loves pretend play, stuffed animals and her blankets.  She is sweet, charming and manages to capture the hearts of everyone around her.  

Nothing has changed other than our awareness.  We still don't know what her future holds, we likely won't for a long time and that's ok.  There is no cure for Cerebral Palsy because the damage is done.  Brains can't be fixed.  But there is therapies and treatments.  And professionals who are passionate about these kids.  Sarah's EI coordinator is amazing.  We only have four more months of Early Intervention and then our time with them is over.  That makes me sad and slightly nervous.  Wendy has become someone I trust and appreciate.  She's encouraged me all the way and supported all of my decisions.  She's offered tools, toys, websites and information all on how I can help Sarah through some of the struggles she has.  

Sarah is simply amazing.  I couldn't have asked for a greater blessing to be part of my life.  She has taught me so much and I am continuing to learn more every day.  

This blog post was inspired by Because Miracles Happen.

1 comment:

  1. She sounds like such an amazing little girl! So glad she has a family who loves her so much!



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