tag:blogger.com,1999:blog-2925597201561256029.post3823993532062521083..comments2023-04-13T06:12:26.697-07:00Comments on Celebrating Phoenix: The "why your kid is crappy" listCelebrating Phoenixhttp://www.blogger.com/profile/07378857366504602663noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-2925597201561256029.post-69885703740743996712012-10-18T08:00:29.100-07:002012-10-18T08:00:29.100-07:00I do think doctors and the geneticists could be mo...I do think doctors and the geneticists could be more positive about Down Syndrome over all. But, I was okay with the diagnosis so for me it was an opportunity to ask questions, which I liked. But I do think that we need to educate these people to explain Down Syndrome in a better way. Yes, list those physical characteristics (which I think are adorable). Then talk about all the possibilities, all the things these kids are capable of. Show us pictures of families and kids with Down Syndrome etc... The problem is, most parents in the beginning don't want to hear the positive yet. They are still grieving and confused and asking all the "why my child" questions. motherofangelshttps://www.blogger.com/profile/02699112811593462978noreply@blogger.comtag:blogger.com,1999:blog-2925597201561256029.post-32388364775756604522012-10-18T07:14:52.478-07:002012-10-18T07:14:52.478-07:00That's the interesting thing about where I am ...That's the interesting thing about where I am Becca, the geneticists only consult at the hospital. Our primary care giver is the pediatrician who orders and follows up on all the tests. That's why it was so pointless. Because we have this really great Dr who is on top of all these things. Like it couldn't wait? We have her whole life to research and understand what DS means for her. We didn't need to be bombarded one day after I gave birth and the same day my baby was admitted to the NICU for monitoring.Celebrating Phoenixhttps://www.blogger.com/profile/07378857366504602663noreply@blogger.comtag:blogger.com,1999:blog-2925597201561256029.post-87176086942586434732012-10-18T07:01:41.912-07:002012-10-18T07:01:41.912-07:00She is SOOOO gorgeous!! And that really stinks ab...She is SOOOO gorgeous!! And that really stinks about your first experience with the geneticist. I'm sorry. :-( Our geneticist is more of the "let's talk about what your child will need going forward" variety. She's awesome. She calls for bloodwork to test for very specific things common with people with Ds, she calls for important x-rays at certain times, etc. She knows what our kids need and when to be able to prevent or stop health issues before they become an issue, and to be proactive in their development. If you have the option of finding a geneticist that specializes in Ds (we have 2 in our area), that's always best, but I know they're few and far between.Beccahttps://www.blogger.com/profile/14963099760885760598noreply@blogger.comtag:blogger.com,1999:blog-2925597201561256029.post-21240600996728888972012-10-18T05:09:35.075-07:002012-10-18T05:09:35.075-07:00I think it is all about the presentation. We had a...I think it is all about the presentation. We had a very warm, considerate, and caring geneticist and therefore the list was delivered as posibilities. I also can't imagine not knowing these things about Down syndrome. Just like a diagnosis of cancer, there are risks, side effects, and other potenial problems. You can't tell a cancer patient what exactly is going to happen to them during and after chemo. What you can do is compassionately educated them so that they can make informed choices and choose how they will deal with their diagnosis.<br /><br />I am sorry that you had a crappy geneticist and we certainly had our fair share of crappy with Bridgie's diagnosis but by the time we got to the geneticist I was so glad to have this information it made me feel less alone.ckbryllianthttps://www.blogger.com/profile/15903634427934180138noreply@blogger.com