Aly & the Greer Family: Visited by Lily LightAide October 5th Family Bio: CVImom.wordpress.com is where I share my 16-month-old daughter Aly's journey. When Aly was born she had severe nystagmus. We were told by her pediatric ophthalmologist that she was totally blind with no light perception. He said her vision loss was neurological. She was diagnosed with Cortical Blindness/Cortical Visual Impairment (CVI) when she was five months old through an MRI. Her vision has continued to improve and she is now focusing and tracking. Aly was also diagnosed with global developmental delays, congenital muscle disorder, microcephaly and brain malformations. She is missing white matter and portions of her frontal, occipital and temporal lobes. She also has a thinned corpus collosum (the part of the brain that connects the right and left hemisphere). It became evident that Aly had hearing loss around the time she turned one. She now wears hearing aids and receives at-home hearing therapy. We are working on getting her into the Mississippi Deaf-Blind Project to serve as an additional therapy for her dual sensory impairment. Aly started therapy (PT, OT, ST) at seven months old and has continued to make progress developmentally. Early detection and intervention has been the key to her success! My family (Aly's brother Triston is 3) recently made the decision to move to Starkville, Mississippi, because of the resources available for Aly. She is currently attending a preschool program for children with disabilities at T. K. Martin Center for Technology and Disability and a pediatric therapy center which provides her with additional feeding therapy. Her occupational therapist at Kids Therapy Spot specializes in children with visual impairments and CVI. We are very fortunate to have a therapist who knows about CVI and light box therapy. Most families in Mississippi who have children with CVI do not receive adequate vision services. There are very few therapists, Early Intervention coordinators, TVIs and medical professionals that know about CVI. These children lack proper assessment and the intervention strategies that will ensure they have a bright future. Aly's journey has inspired me to become an advocate for ALL children with CVI by the creation of The Alyssa Greer CVI Foundation, a non-profit organization that will provide families with the resources, support and education they so desperately need, as well as bring awareness and specialized training for professionals in our state. You can also find us at the CVI Connection on Facebook. Participating in the Backpacking LightAide Program is very exciting for all of us. Aly responds very well to her light box and I know she will love and benefit from the LightAide. I will be sharing the LightAide with her therapists and teachers. It's innovative technology and programs such as the Backpacking LightAide Program that gives children like my Aly the chance to excell no matter their impairments. We look forward to sharing our experience with you all! What is Aly Doing with Lily LightAide? Aly and the LightAide: Brittany says Aly loved the LightAide immediately! "She was very drawn to the light and movement. For Aly, the switches helped with her purposeful movement by utilizing cause and effect. When she pushed the button the shapes would change or the lines would move." Local Family Brings Light to CVI: Read this story in the Starkville Daily News about Aly and the LightAide! Sharing the LightAide: Aly takes Lily LightAide to school and her teacher gets to chime in. She says, "Using the LightAide was also another way for me to work on switch access with Aly. We have used a switch before to operate classroom toys, but she really seemed to grasp the concept that she was making the light pattern change." Way to go Aly! Final Thoughts on the LightAide: Brittany says using the LightAide with Aly "has been an eye opener for me. I have seen the LIGHT. Lights are the key to unlocking my daughter’s learning potential." And she really means it! Check out Aly using a switch with the LightAide in the video below: My Daughter Baby, Aly has the chance the win her very own LightAide for Christmas. Aly has CVI, microcephaly, GDD, white matter deficiency/brain malformations and is legally deafblind. The LightAide uses vibrant colored lights and movement as a way to teach a wide variety of skills. Please go to the link posted and vote for ALY and the GREER family. You can vote once a day until December 15th at midnight. Please help Aly by sharing this link and VOTE, VOTE, VOTE!!! Thank you all! VOTE AT THIS LINK BELOW vote for ALY and the GREER family. http://www.wonderbaby.org/which-family-will-keep-lily-lightaide Which family will keep Lily LightAide? www.wonderbaby.org Help us choose a family to win a LightAide! We have six families in the running and your vote can make all the difference. Voting ends December 15, 2013. Help Lily Find a Place to Live! One of the six families who hosted Lily will get to keep her! Help Lily decide where to live by choosing one family below who will win their very own LightAide! You can come back to vote once a day until December 15, 2013 at midnight (Eastern Time). We'll announce the winner on December 16, 2013. Lily LightAide™ has been traveling across the United States visiting families so they can learn all about her bright lights and fun features. She's made her way back to Perkins Products and she's ready to settle down. But where should she live? http://www.wonderbaby.org/which-family-will-keep-lily-lightaide Vote for ALY and the GREER family. You can vote once a day until December 15th at midnight. http://www.wonderbaby.org/which-family-will-keep-lily-lightaide CVImom.wordpress.com is where I share my 16-month-old daughter Aly's journey. Brittany Greer http://cvimom.wordpress.com/ https://www.facebook.com/bgreer2011 Posted in Lily LightAide Tagged Backpacking LightAide, ///////