tag:blogger.com,1999:blog-31461418.post871283607556782337..comments2023-09-07T20:24:11.937-04:00Comments on Ryn Tale's Book of Days:: Ashley from Stepford- RepostedKathrynhttp://www.blogger.com/profile/16388107764837538301noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-31461418.post-7237905412448106362007-01-14T06:49:00.000-05:002007-01-14T06:49:00.000-05:00Mete, Thanks for your thoughtful comment. I think ...Mete, Thanks for your thoughtful comment. I think that having 80 seizures per day is life threatening to your son in that it is damaging his brain. The differences between your son and Ashley are great in that she is not having seizures. In fact her parents report that she is generally pretty placid. They did the things they did out of fear for the quality of her life in the future - not at present where they report she is well cared for.<br /><br />There is no medical urgency there. Your son having so many seizures has medically urgent needs. Seizures are horrible things to live through. I have seen my daughter have them and they clearly are awful. I think you have to do whatever you can to help your son have a better quality of life. I agree with you about not making never statements. You're right there. <br /><br />We have had to alter Ellie's body and it really bothers me that we did. She has a g-tube and shunts. Both were medically necessary. She also has AFOs so that her feet don't twist permanently. The Rudolf Steiner folks would say that that is over board. <br /><br />The problem I have with Ashley's parents is that they are recommending this for other children. I would hate it to become one of the things the doctors offer up in the NICU for example when outcomes at that point are not clear. <br /><br />I am sure Ashley's parents are doing the best they can with what they have got. I do empathsize with their issues as I am a parent who is facing lifting a non walking, crawling or sitting on her own child. Just the same, I think what they did is wrong. I think on the benefit of the doubt side for them that the system has failed them. The fact that they can't find carers for her that are competent and don't have a lift is just plain wrong too. I know that in Massachusettes these benefits can be had if you fight hard enough. In other states it might not be so. Either way it's an incredibly difficult situation. Just the same, holding out that the Ashley Treatment is a plausible way to proceed for the general disabled population is truly not the way to go.Kathrynhttps://www.blogger.com/profile/16388107764837538301noreply@blogger.comtag:blogger.com,1999:blog-31461418.post-82755882471758213102007-01-13T23:25:00.000-05:002007-01-13T23:25:00.000-05:00I've been lurking for a while, and just wanted to ...I've been lurking for a while, and just wanted to comment. You made a statement that makes me think:<br /><br /><i>...[Even] if Ellie did not show as much promise as she does or any promise, I would not alter her body unless it was medically necessary for her survival.</i><br /><br />The question is, what do you mean by survival? To me, "survival" is the difference between life and death, nothing more. But sometimes one can survive without thriving.<br /><br />There has been talk of implanting a vagas nerve stimulator, something similar to a pacemaker, to (possibly) reduce my son's seizures in the future. There is also another surgery that has been briefly discussed to separate the halves of the brain, also for (possible) better seizure control.<br /><br />There is no guarantee that either of these procedures will work to reduce his seizures. They have varied success rates. And he can absolutely <b>survive</b> without them. However, what about his quality of life with 80+ seizures a day? Is it not worth a chance at giving him a better life?<br /><br />We often have a possibility to make life better, even if survival is not at stake. This is just one example that I am facing, but other parents face similar dilemnas every day. Personally, I would think twice before making a "never" statement with something as complex as parenting.<br /><br />I think it's unfair for you to call Ashley's parents dishonest and say that their true motivation is their own needs (ease of management). You may disagree with them, but is it that difficult to give them the benefit of the doubt? To accept that they might actually be looking at what's best for their daughter? <br /><br />Yes, there is a side benefit that it is somewhat easier to lift Ashley at this size than it would have been if she got larger. I have never seen them deny that. However, she is still over four feet tall, 75 pounds, and severely physically and mentally handicapped. I think it's safe to say that caring for Ashley will never be "easy", no matter what her size.Metehttps://www.blogger.com/profile/07276808432623125931noreply@blogger.com