National Cerebral Palsy Awareness Month

Wow, March is busy! March is also National Cerebral Palsy Awareness Month. Just as with all the other month long celebrations, I am sharing Charlie’s story.

I knew there was something “not quite right” about the way Charlie moved when she had been home from the NICU for a few months. Her hands didn’t open when they should have, she missed all of her motor milestones at her adjusted age, and she was incredibly rigid when she slept. I begged the pediatrician for answers and she started Early Intervention.

Charlie was supposed to be one of those super preemies that left the NICU and never looked back. Because her NICU head scans appeared fine, we were not warned that cerebral palsy was a possibility. It was never discussed with us.

therapy I was blindsided by the delays and did my own research. My best guess concluded we were most likely dealing with cerebral palsy. I learned from my research we could help her. I just needed someone to tell me how.

Shortly after she missed her milestones, Charlie saw a developmental pediatrician. Although he did not diagnose her initially, he prescribed PT, OT, and feeding therapy. Charlie received her diagnosis of spastic diplegia at about eighteen months. Prior to that, I connected with another mom of a girl with cerebral palsy that has been an incredible support and resource (Thanks, Nicky).

After a couple months of therapy, Charlie’s hands opened and she could hold a toy. She learned to roll over a few months later. Things continued to progress with plenty of hard work and lots of therapy. She is now mastering walking. However, the multitude of therapies continue.

Cerebral palsy is a disorder that is a spectrum and affects each person differently. If there is one thing I want other parents of children newly diagnosed with CP to know, it is don’t give up hope. A diagnosis is helpful in order to receive services and understand the nature of the delays. It does not necessarily predict the future.

I’ve been amazed at how far Charlie has come and how much she can do.

walking toddler

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

2 responses to “National Cerebral Palsy Awareness Month

  • Jocelyn

    I found your blog via tumblr. I’m telling you this because I’m sure my parents would have appreciated hearing something similar when I was a kid: I’m a law-degree-holding professional with spastic diplegia. Make sure your daughter uses her CP as a strength and as a way to persevere. (But also allow her the time and space to get really frustrated by it — both of those things will happen.)

    She’s lucky to have such a supportive family from the start!

    Like

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