"Trick or Treat!"

Tonight was an unusually calm night for us. It happened to be just my kids, my dad, and my self for the actual trick or treating. Grandma came later to help pass out candy! June had a great time! She has a "speech" button that was programed for "trick or treat" and "happy halloween" and was hitting it at appropriate times! She seemed to really enjoy going to the doors.

Kitty June 

The kids

I could tell some people were a little confused by her, her chair isn't quite a wheel chair and she is still in that little enough to not totally place her age stage. At the end people seemed to catch on and go with it!

June playing with pumpkin goo!

We carved our pumpkins last night and June really enjoyed the sensory play time! She loves the smell of pumpkin. I did happen to find about 1000 seeds under her chair cover, maybe she was trying to grow her own.

November 1st marks the start of Epilepsy Awareness Month. When we started this journey I never thought I would gain so many friends and such an amazing support system. This November also marks the two year anniversary of June's Diagnosis of Aicardi Syndrome. I encourage you to visit their site. www.aicardisyndrome.org There is a lot of information about this... syndrome. 

Aicardi Syndrome is a rare non genetic seizure disorder. It is diagnosed because of Absence of the Corpus Collusum, Lucna of the eye, and uncontrolled seizures. There are currently 500-1000 known girls in the world to have this syndrome. It only happens to girls. They are still working on testing to see which chromosome is effected, there is no cure....

Our girls lead a tough life. Not always a very long life, but each and every one changes the world in their own way. I am a better person because of my daughter June.

Wear purple this month, support Epilepsy!

Proud Mama Moment:

Today at school Lili had a Halloween parade. After everyone returned to their classes, I brought June down to Lili's room to get her to go home. Out side the door her friend looked at June and asked Lili if June was sick, "No, my sister has seizures. Her brain isn't the same as ours, but she had a lot of fun today! Say Hi to her!" - I WAS SO PROUD! She stood up and told about her sister with no hesitation and very proudly. Another mom was pretty impressed by Lili too! My girls, they will change the world together!