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Danny has a pretty good quality of life. He has to take a LOT of medicine and because of the severity of his asthma there are A LOT of things he can't do but there are also a lot of things he can do. He was so young when things started that he doesn't really notice that anything is missing. Sometimes he will get upset when he can't go somewhere that his uncles (ages 5,5,and 7) can but he will usually be okay as long as we do something special too. I try to have a balance. If he can't do x than we will do y. It seems to have worked really well.
I'd say a 7.5 out of 10. The only hinderences she has are that she scares easily by things other children should be able to enjoy and that communication makes it less easy for her to get her needs/wants met
"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
People ask me about QoL a lot and I can honestly say hers is good. She's very happy. Her feeding tube ADDS to her QoL because she feels better and is getting exactly what she should. Her port also adds to it because we don't need to "dig" anymore.
I try to have a balance. If he can't do x than we will do y. It seems to have worked really well.
Overall I think Ellie's quality of life is excellent. We work really hard to make sure her life is just as balanced and enjoyable as her sisters. We include her in everything we can. Lately she's really starting to show us that she's happy with her life. We're not all the way there yet, but close.