Tell us your child’s story.
Before surgery his mother had a meeting with surgeons, nurses, chaplain and social workers from Kosair. They needed her to make a decision on whether to let Levi go home and die or have the surgery with the odds of him making it through was very slim. She wanted Levi to have the surgery. He had Total Anomalous Pulmonary Venous Return (TAPVR). As of December 2012 Levi was only the 2nd child in the state of Kentucky to have this surgery. Levi survived the surgery. Genetic testing determined Levi had an Unnamed Genetic Syndrome. Levi is blind and has LGS Lennox-Gastaut syndrome, Cerebral Palsy, Global Development Delay, Microlissencephaly and Agenesis of corpus callosum (ACC). Levi is non-mobile and non-verbal and needs 24/7 constant care. He has a gtube for feeding and medications. Levi has made great strides in his cognitive development as he gets older with therapy.
Why did you choose APT for therapy services?
What improvements have you seen in your child since they started therapy at APT?
Improvements of fine and gross motor skills, his use of switches, and core strength.
What has been your brightest moment along this journey?
There are so many, but even though he is blind and developmentally delayed I feel he connects with each of us. He knows who his holding him and acts appropriately with that person. For example, he only kisses my mother.
What advice would you give other parents who face similar situations?
Never feel sorry for yourself or your child.
Speech Therapist, Courtney Johnson and Occupational Therapist, Molly Lester, currently see Levi at APT. We asked them to share a little about their journey with him.
How long have you been working with Levi and what improvements have you seen?
I have been working with Levi for a little over 1 year, and I have seen a lot of improvements! Our speech therapy is a little different than typical speech and language therapy, but that is one of the many reasons why I love working with Mr. Levi. He has shown a lot of progress when it comes to attending to me and Molly (his Occupational Therapist) during therapy sessions. He is tracking visually and auditorily and has shown increased engagement and interaction. Levi has also improved when activating various switches to control toys/objects of interest in order to work toward a way to better communicate. He is now able to imitate various vocalizations, vowel sounds, and some consonant sounds when participating in preferred activities. Considering his many improvements, we have even begun working on oral motor skills for feeding and swallowing. Levi has made many great strides this year!
I have been working with Levi for about 2 years now. When I began working with Levi, I was asked to co-treat with speech therapy to address Levi’s positioning for increase accessibility for his communication devices/switches. We now have met many goals and are working on tolerating new sensory experiences such as touching different textures and materials. Functional movements such as rolling, laying on his stomach and lifting his head up and activating new and different communication devices each week. We have even begun working on oral motor skills to promote drinking and hopefully eventually eating!
Describe a little about your relationship with Levi.
My relationship with Levi and his family is great! I always look forward to hearing about all the activities he is involved in throughout the year. Whether that be his crazy/fun Halloween costumes, or his state fair experiences. I know that his family keeps him involved and participating in anything they can! Levi’s family is awesome to work with and provides me with feedback regarding his way of communicating and any progress they have seen when it comes to him vocalizing or his oral motor skills. With that said, I can always count on his family to follow through with the suggestions that are provided in therapy. They are Levi’s biggest fan club and are willing to do whatever it takes to make sure he is making progress.
I have a great relationship with Levi’s family. They are terrific! They expose Levi to so many new and different activities from going to the Kentucky Derby every year, trips to Mammoth cave, the beach, and very elaborate Halloween costumes! They make sure Levi participates in many exciting experiences. Levi’s family communicate with us every week and shares with us his highs and lows. It is awesome to be apart of their team and help Levi reach new goals!