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Tuesday, August 5, 2014

Knowledge is Power

We all know the power of the internet. What an amazing tool it has become! I am very thankful to live in a generation where technology is at the tip of your fingertips. It has made research and communication so easily accessible that it can at times become overwhelming. As I mentioned in my first blog post, the internet can also turn the most sane person into a hypochondriac! So I hope to alleviate that for the next person by sharing links that were helpful for me.

After reading case study after case study about what polymicrogyria was, and expectations for development and life, my head was spinning. I opted to stop checking the top search results and dug a little deeper. I was looking for personal experiences with this diagnosis to help ease my overactive imagination. I already knew that Aisllyn's diagnosis was not as severe as anything I found, or anything we were told to expect. 

I ran across a wonderful organization, PMGAwareness.org. They have fantastic links to additional resources; an abundance of knowledge that I have yet to make it through, but it really helped. 

In researching the microcephaly diagnosis Aisllyn received, I found an incredible website and organization, Foundation for Children with Microcephaly.

I also found a book that was a saving grace for my heart and mind. Written by an incredibly talented and witty author, Rob Rummel-Hudson, it shares his journey with his daughter Schuyler's diagnosis of polymicrogyria. It is called Schuyler's Monster: A Father's Journey with His Wordless Daughter. I highly recommend anyone who has not read the book, whether affected by this diagnosis or not, to read it. It is a short read, and I believe it cost me 6.99 on iTunes. I found his blog and the book just a few short weeks after we received the results of the MRI from the neurologist. His blog is titled Fighting Monsters with Rubber Swords. I had the pleasure of sharing this book with my mother because she decided to download the book and read it along with me. Thank you mom! Again, I highly recommend this book! 

I plan to eventually compile links on the home page of my blog for faster access, but for now, I wanted to pass along these helpful resources. 

3 comments:

  1. Keep posting honey, I know you will be a great source of comfort and encouragement to others! I am very proud if you!

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  2. Hey Tina! This is great. Keep up the good work. We are our childrens best authors

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  3. Thank you both for the encouragement! And yes, we are our children's best authors!

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