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Thank you all for your warm welcome! I just think this forum is so amazing! Rhonda, I think your son is just adorable. Beth, Kennedy is just so beautiful! Thank you for thinking that I have a good perspective. It did take me a while to come to this point. I was somewhat sad when my granddaughter was born, but I was especially frightened of the unknown. I was one of the lucky ones, as I found this website and forum shortly after Olivia's birth. We did not know that Olivia had DS until the time of her birth. It has been an amazing journey! We were lucky in that the doctor who delivered her has a nephew with Down Syndrome (he was 4 years old at the time of her birth). This doctor was so upbeat, and told us how well his nephew was doing. I think this was a great way to start out, because like I mentioned in my first post, I have been lurking here for over 2 years (shame on me for not posting sooner - LOL)! And I know not everyone's birth experience was a pleasant one. There are still some doctors that need to be educated on how to welcome these babies into the world. The day Olivia came home from the hospital, she stopped breathing. Fortunately my daughter-in-law was holding her and was able to resusitate her until the paramedics arrived. I don't recall that the emergency room doctor had much information for them at the time. They just sent them home, and her mother ended up sitting up all night watching her. My sister who is a nurse said they needed to get a monitor for her, which they did. As many of you have probably experienced, these monitors seem very sensitive and it kept going off very easily. I can't remember how long they used the monitor, probably until she could roll over on her own. Her parents spent a lot of sleepless nights! But, you know I never once heard them complain, they just did what needed to be done. They have so much love for her! Olivia was diagnosed with two holes in her heart. I don't remember what this condition is called, I would have to look it up as I have forgotten. But, I know one hole has closed up on it's own, and the other one has either completely closed or is very small. They were told that there was a chance the one could open again, but if it did it could probably be controlled with medication, or if she did need surgery it would not be open heart surgery, they would go up through her groin (or something like that). Olivia also had problems with reflux, and they had to thicken her formula. My daughter worked with a child who has DS when she did her student teaching in college. My daughter also tutored him during the summer. My daughter would come home everyday with such excitement and joy on her face. She couldn't wait to tell me about this little boy, she was just so in love with him! How can you not love these children!?!? I was lucky enough to meet him a few times, and he was just so precious! That was about 10 years ago, and I have to tell you that his mother worked so hard to make sure her son was included in things that she felt were important. Unfortunately, she did end up with a reputation of being a "witch" (only with a "B"). But, bless her heart, because she really helped forge the way for our children. It wasn't easy for her, but she sure was determined. Amy, Austin is so cute, and just precious! I am so sorry to hear that your friend had to go through such a sad experience. It is just unthinkable that someone could go through that twice. I did look up some information about Trisomy 13 and it was very difficult for me to read and look at pictures of these babies. It just breaks your heart. But, I needed to do this so I would have a better understanding of what my friend and her family are going through. They have a very strong faith, and they say this is what is getting them through this terrible time. I feel like I know all of you so well, because I have been following each of you for so long. I have laughed and cried with all of you. I love to look at the photos, and can't wait to read the introductions. But, it breaks my heart sometimes when I see some of the new parents struggling with the diagnosis of DS. I don't judge them harshly, because I know it's pretty normal to feel that way. But, isn't it so amazing to see how these parents "blossom" as they learn more, and are not so afraid? Thank you for letting me "ramble", as I know this is long. I'm sure I will be jumping in here now and then. My husband has told me more that once that I should post, as maybe I can be of help to someone.
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03-11-2006 10:32 PM
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