How do they deal with their diagnosis?
Do they understand what is wrong?
Because of some of their limitations, do the other kids treat them differently?
Hailey is only 2, but I figured i'd answer anyways because we're starting to explain it to her.
She had her cardio appt in April [20 months]. We talked about what would happen - the doctor is going to put stickers on her belly, and listen to it with a stethoscope, and use the ultrasound machine to look at her heart. She has been telling people "my heart hurts." She thinks it is really cool. She doesn't understand fully by any means what is wrong, nor can I expect her to. She does I think realize that it "hurts." Not physically, like if she were to fall and scrap a knee, but that something is not right. She will go again in Dec or Jan, and because she loves to play doctor we pretend to go to the cardiologist. She listens to my heart and asks me if mine hurts or her friends. My mom is a nurse, so when she comes over we play with her stethoscope and let her listen to hers and ours. Of course she doesn't understand the "vacuum" sound is the pressure in her valve nor do I expect it.
I thought it was really cool, a girl at our church had a liver transplant soon after birth. She said "I have to take medicine so my body will be nice to it."
I know Alexis doesn't really understand what is going on, or if she does, she can't communicate it with us. So, she deals fine with her diagnosis, mostly because she doesn't realize she is different from the other kids. So far most of the other kids deal well with her, but she is still in special ed and obviously the kids in her class have some sort of issues as well. We will have to see how things go as she gets older
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