Thursday, March 24, 2011

Get your purple ready!

Saturday is Purple Day!
This is from the website..Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2010, people in dozens of countries on all continents except Antarctica worldwide participated in Purple Day. With your help, Purple Day 2011 will be even bigger!

If you go to the website you can see many ways you can help.

If you chose to wear purple don't stop there, talk about it! Tell people why you are wearing purple, tell them Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Tell them epilepsy keeps getting research funding cut.

Look up your local epilepsy foundation and see what you can do to help. Do a fundraiser, involve your kids, co-workers, family or school. Educate yourself on what you do if you witness a seizure is a great site.

There is SO much information out there!

This is last years purple day picture, my goodness how things have changed!

Emily has 12 more days of ACTH shots left. She is doing very well with the wean. We are seeing a little bit of her personality each day. She is still not sleeping well but that is not new :). She woke up yesterday at 4:30am but she was so happy and smiley. I have missed those smiles so much!
My cousin got Emily this shirt from the facebook page polkadot whimsy, isn't it cute!

It has been almost 6 weeks since Emily's last spasm, I can hardly believe it. I get scared saying that, afraid that "they" will return. We don't know if or when they will ever return but we cannot live our lives in fear of "ifs and "whens" so we are celebrating Emily.
She is an amazing little girl and I am lucky to be her mom.

1 comment:

  1. She is beautiful. I am so glad that you are seeing some personality while still weaning the ACTH. My daughter was on it for 10 weeks several years ago and it was one of the hardest times in our lives. I pray it keeps those nasty spasms away!