About Me

Wife, Physical Therapist turned stay-at-home SMA mom, and Independent Wellness Advocate for essential oils. I'm Meredith and this is the journey of our beautiful life! I am Mom to our sweet Leo, who was diagnosed with Spinal Muscular Atrophy (SMA) at 3 wks of age. SMA is a terminal, neuromuscular genetic disease. Our life is not what we "planned", and it can certainly bring many tears at times, but Leo shines a light brighter than we could have ever imagined. His love and joy has changed our lives, and we are forever grateful for our greatest blessing. He is medically fragile and requires 24/7 skilled care, but to us he is perfection. He is part of a greater plan we are just beginning to get a glimpse of. We live life embracing every moment, and doing everything we can to give Leo every experience possible all while praising God for our MANY blessings.
Showing posts with label communication. Show all posts
Showing posts with label communication. Show all posts

Thursday, September 10, 2015

Leo's Interview!

Here is the link to the interview!We are so very proud of Leo! He did so great!
Thank you Jasmine Styles and wltx for helping share Leo's story! He had so much fun watching himself on TV!

Sunday, August 9, 2015

SMA Awareness: Communication!
Like Leo's other muscles, the muscle he uses to speak are also weakened. It requires a great deal of coordination to be able to speak, and his strength is not great enough to be able to vocalize as clearly as most. Leo uses various methods of communication. He has a Tobii Eye Gaze computer. This is a computer with games, communication software and internet access that Leo can control all by using his eyes! He has been able to operate this computer since he was 10 months old! His progress and ability to navigate using this computer has amazed all of us! Like other children, he is growing and learning so fast and we are so very thankful that we live in an age where he has access to such amazing technology. He enjoys talking about his best buddy Wyatt, playing music and other games. He has been able to tell me about the animals at the zoo, when he needs a diaper change and say "I love you." He also likes to say wagon ride, and outside (his favorite things). He also loves to talk about his friends, family and therapists that are pictured on his tobii.
He very much understands that this is his voice. He will say things and then look to us for our response after saying them. He will say "I love you" and then grin, cut his eyes at us and give a sweet giggle.
We were originally told Leo would not be able to get this device until he was two years old !! We decided that was just not acceptable! We knew Leo could benefit from this device much younger than that. We took him to the South Carolina Assistive Technology Center, where the director agreed to let Leo try the device. Well he blew us all away! She immediately said "When can you come back?" and "This is amazing, he needs to be getting this device, he is doing it!" The director at SCATP has gone above and beyond to see Leo reach his potential. She does not know the word can't, and will instead find a way. (visit http://www.sc.edu/scatp/index.htm, this program is NOT limited by eligibility criteria and has a mission to help! "SCAPT helps people find Assistive Technology for all areas of life, with particular emphasis on education, employment, information technology (IT) and telecommunication, and community living." I would encourage you to share if you know someone that could benefit from these services. I am so very thankful we have this resource. Leo's SLP has been wonderful as well and works 2x a week with Leo ! (when he is not out for zoo therapy) She shares the same attitude of nothing is going to hold Leo back, and we are so very appreciative of that. Leo loves having speech therapy, and he works very hard the whole time.
Leo also communicates by saying "uh huh" and blinks once for yes. He also makes choices by looking at a particular item. We have learned to read his eyes and other expressions. His eyes tell us so much!