Elisa Dibiase
From Holoprosencephaly
Elisa Dibiase Born: on May 8th 2000
She was diagnosed with Lobar HPE, Diabetes Insipidus, Agenesis of the corpus callosum, microcephaly and has a feeding tube. As she got older we found that she has muscle spasticity and cortisol defficency. She is totally dependent upon us and is wheelchair bound. This may be what she has but this is not who she is.
Elisa is a loving girl. She loves to laugh and has a great sense of humor. She laughs at just about any kind of silly play. Her favorite is when you run around the room making a bunch of noises. Sometimes I wonder if shes laughing because its funny or at us.
Elisa loves when you sing to her, she has a few favorites but she likes alot of songs you have to do hand movements to. Something about moving your hands and feet really makes her laugh. One of her favorite past times is the tv. Her all time two favorite shows Dora and Sesame Street. She really enjoys when the singing and dancing come on Dora and she laughs the most at Grover but pays close attention to Elmo.
A lot of Elisa's communication is through her eyes and her body language. She has certain tones to her voice and body movements that allows us to figure out what could be wrong. It took us a little while before we figured out what could be the problem but now we have it down to a science.
She attends a public school but is in the Life Skills class. She has PT, OT and Speech along with some co treatments. She has each therapy 3-4 times per week at 1/2 hr sessions. She is just now starting to pick between 2 objects with her eyes and attempts with her hands. They are becoming more purposeful than when we started back when she was little.
She loves watching the other children in her school. Along with her little sister Gianna who is 20 months old. Elisa pays close attention to her surroundings. She does get over stimulated a lot and we usually have to take her to her bedroom if we are home or to some place that is quiet. This can be difficult when trying to take her out of the house but Elisa keeps happy if she is moving. She loves to be outside when its peaceful. She really enjoys watching the wind blow the trees and leaves around. She loves to go camping and when she is there she's like a whole different child...she's at peace, her mind, body and soul.
Elisa has taught us alot about life itself. When she was first born it was really hard to swallow that Elisa may never be like all the other "normal" children. It was hard to accept that she will never walk, talk or even be able to eat on her own. I got over that quick because regardless of what she can or can't do I don't love her any less. But you know I would never trade my life for someone else's. She is our angel...an angel who is pure and innocent. One who will do no harm to others and not see the hatred this world has. Its kind of a blessing that God has protected her that way. I used to say "Why would God do this to us?" Now its "God only gives us what we can handle." I would not be who I am today if it wasn't for Elisa. Because of my beautiful 7yr. old I am a stronger woman. She has taught me more about life than any piece of paper or person could have ever done for me. She is a blessing and for God to trust me with Elisa...I am honored. Elisa made me and my daughter Gianna completes me.
