tag:blogger.com,1999:blog-7858587200636060230.post3935867883591231927..comments2022-10-29T02:34:57.378-07:00Comments on Amazing Adventures of Ayden Jane: Excitement is BuildingJanet Gulleyhttp://www.blogger.com/profile/06162344678840835262noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-7858587200636060230.post-50498480401472095242013-10-28T08:45:01.394-07:002013-10-28T08:45:01.394-07:00So glad that my ramblings are helpful. You were s...So glad that my ramblings are helpful. You were smart to just tune out the internet for a bit. As you get into it you will find the PWS groups and sites that are hopeful and positive. Just remember that we really can't look too far ahead as the adults out there with PWS just did not have the advantages that our kids do. In fact, I hope that Connor and others just starting out will have it even easier than we have. So many pieces are being uncovered with this crazy syndrome. Sounds like Connor is off to a great start! Feel free to ask me questions (I won't promise I'll have answers but I will try) and I will continue to ramble on about our crazy, not so little anymore Ayden Jane.<br /><br /> Janet Gulleyhttps://www.blogger.com/profile/06162344678840835262noreply@blogger.comtag:blogger.com,1999:blog-7858587200636060230.post-58465943417368219552013-10-25T18:24:05.177-07:002013-10-25T18:24:05.177-07:00Hi, My name is Ashley Crist and I am from Mobile, ...Hi, My name is Ashley Crist and I am from Mobile, AL. I recently had my first child in August. Two weeks after birth we found out the he has PWS. I begin to do research online and quickly found that I needed to hold off on the research because I had not prepared myself for what I was about to see/read. I began to just tell myself that my son will tell me what he can or can't do. He is now two months old and doing well for what they told us he would do. I recently decided that I was going to see if there were any blogs that I could read to kind of understand what was to come. I came across your blog and wanted you to know that it has helped me so much! Thank you for that! We started PT and OT this past week so I am curious to see the progress that he will make. Connor is still on an NG tube because he is not taking all of his feeds, but is getting better. I was also reading that you went to Florida to visit a specialist, Dr. Miller. I am happy to say that I already scheduled our first appointment and we go November 20th. He will start growth hormones the day that we go. Yesterday, I got a call from our genetics Dr. and we found out that his PWS is UPD. I just want you to know that I love reading about Ayden Jane and that I think she is precious!!! Your blog has helped me deal with everything so much better and has given me hope for the days that are coming. Thank you!!<br /><br />Ashley CristAshley Jhttps://www.blogger.com/profile/02367738882414061123noreply@blogger.comtag:blogger.com,1999:blog-7858587200636060230.post-19440847203326495992013-10-21T03:48:08.604-07:002013-10-21T03:48:08.604-07:00AJ is such a trooper giving so much inspiration ev...AJ is such a trooper giving so much inspiration even to 27 years old. <br /><br />Well, even if she has limitations, she tries to find the way to do what she wants anyway. <br />She grasped that the shortest road is not always the straightforward one. <br />Many, many folks don't grasp such a concept at kindergarten. <br />In a certain way, you can be blessed to have a kid more intelligent than her peers. <br />No, I am not talking about IQ (and IQ score is not the person's identity). <br /><br />I can relate in her not feeling a PWS kid. <br />Since she knows only life with PWS, it is her normalcy. It is her human condition. <br />Of course, you played a role in this, but at her age, the disability is a sort of normalcy. <br />In this sense, children react in a more natural way to disability than adults. May sound odd to you, but this is what I notice. <br />My stepbrother asked us why do I hear only from one side and why do I need to take meds and why noise hurts me. He was content to hear "because I was born like that". <br />For this very reason, I encouraged you to answer the questions about the why of her diet "because she has Prader-Willi syndrome" the same way someone with celiac disease would say "I don't eat gluten because I have celiac disease". <br />Honesty and straightforward is the best policy. <br />After all, disability is not a four-letter word as we say in France !<br /><br /><br /><br />Giulianoreply@blogger.com