tag:blogger.com,1999:blog-494614934984144614.post1990920711833562978..comments2023-08-21T05:38:09.942-04:00Comments on Falling for Baby: OH, HEY!Sarahhttp://www.blogger.com/profile/14109435826887215070noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-494614934984144614.post-17833134916873526532010-08-05T17:06:31.179-04:002010-08-05T17:06:31.179-04:00I have a 6.5 year old girl w/ PWS. She was not di...I have a 6.5 year old girl w/ PWS. She was not diagnosed for 20 months.... Longest 20 months of my life~!! I was just relieved to know she was going to be w/ us for a while--some scary "stuff" out there.<br /><br />Some advice to you that has been give to me. #1... never read anything on the internet. That is old information, relative to current medicine. In addition, you are treating the individual child, not the entire syndrome. #2.... As soon as you can you start building healthy lifestyles for the child. My daughter, Cassie, walks a mile to school every day and is on a 900-calorie diet to stay thin and fit. No awful eating yet. #3..... I cannot tell your doctor what to do, but all of Cassie's doctors, from Pediatrician to Endocrinologist wanted her on Growth Hormone. We were very conservative w/ sleep studies before, a month in and then 6 months in. My mother refers to it as the miracle drug. We are involved in clinical research in FL, and they really pushed it too.<br /><br />Lastly, not advice that was given to me from any medical team, but from one PWS mom to another...... You are at a really tough stage that will last a bit longer. Cassie sat up at 13 months, crawled at 23 and walked at 33 months. After that things got a little easier. Not that I don't work hard still and worry a lot, but you are at a much tougher stage. Hang in there~!!<br /><br />To provide you w/ some hope, Cassie has taken up swimming this summer and can swim 10 lengths of a 25 meter pool. She successfully completed Kindergarten and will be heading to a mainstream first grade class in the fall. Yes there are still therapies and a ton of work, but it is all paying off now. There were about 5 years of happy milestones, but now I am receiving a ton a "job satisfaction."<br /><br />Good luck~!!!!!Heathernoreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-32268342700238421342010-07-15T16:23:51.012-04:002010-07-15T16:23:51.012-04:00Great pictures Sare, the pic of you and Lillian ca...Great pictures Sare, the pic of you and Lillian camping, now that is what life is about, enjoying your children!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-88887901746165558552010-07-13T23:15:16.679-04:002010-07-13T23:15:16.679-04:00Wow...looks like your having a wonderful summer......Wow...looks like your having a wonderful summer...beautiful pic's!!! <br />Congratulations on your anniversary!!!Sarahhttps://www.blogger.com/profile/03204611429493833222noreply@blogger.com