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Living With… Cerebral Palsy (CP)

Hello! My name is Wesley. I was born at 25 weeks Gestational Age, making me premature. At birth, I needed to be resuscitated for 2 hours. My Mom is a former NICU (Neo-natal Intensive Care Unit) Nurse and knew there was a high probability that I would have issues. When I was 1.5 months old, I was finally stable enough to have an MRI. The doctors then confirmed that I had some brain damage that resulted in Cerebral Palsy (CP). After 5 months, my apnea was finally under control and I was able to go home! My Mom and Dad, Amy & Blaine, couldn’t have been more proud of me that day! They tell me that I’m a fighter!

I am now 2 years old and I am a busy little guy! My state offers Early Intervention Services for children 0 – 5 years old. It’s called the Early Development Network. I have different people assigned to me that help me through my development. My Service Coordinator and my Physical Therapist both come to my house to work with me and my family. I also go to a rehabilitation center where I receive Occupational Therapy, more Physical Therapy, Speech Therapy and Water Therapy. The Water Therapy is my favorite. And someday, my Mom wants me to do hippotherapy since she grew up with horses.

All of my therapists have helped my parents identify the best adaptive equipment for me to use to help me develop different skills. Since I need help to sit up, I use the Special Tomato Buggy and EIO with the Soft-Touch Sitter in them. This pair is a great solution for so many things: going to the zoo, running races with my parents and they even put my Special Tomato Soft-Touch Sitter into a bicycle trailer for family bike rides.

My parents, day car staff, and in-home nursing staff help me carry out my therapy goals every day. I use a floor sitter at day care. I also have all of the following items at home: an EASys Seating System, a Tumble Forms TriStander, a Leckey Bath Chair, a Comfy LiftBed, AFO’s (Ankle Foot Orthosis), hand splints and switches. They are currently working to get me an EasyStand Bantam Stander (a sit-to-stand stander). And thankfully I’m still able to fit into commercially available swings…because I love to swing!

We asked Amy, Wesley’s Mom, to describe him for us. “He is always happy, a snuggler, a cuddle bug! He loves to swing!” And although Wesley may not use a lot of vocalizations, it is still evident that he loves people through his actions. And he is beginning to use some sign language to communicate as well.

Amy & Blaine’s love for Wesley is evident. When we asked her what life is like living with Wesley, she said that they “wouldn’t want things to be different because then it wouldn’t be Wesley.” They both had dreams for their unborn baby. Instead of giving up those dreams when Wesley was born, they adapted their dreams to Wesley!

Amy shares their story whenever she can. She wants those that haven’t experienced similar situations to know the truth. She wants everyone to know that Wesley is not a burden, and he doesn’t make their life difficult. It’s “hard to explain to those that don’t know. Wesley gives so much more. He has a different love. There is more strength in him, giving him more love to give.”