tag:blogger.com,1999:blog-494614934984144614.post2332522025002672690..comments2023-08-21T05:38:09.942-04:00Comments on Falling for Baby: Living with Prader-Willi SyndromeSarahhttp://www.blogger.com/profile/14109435826887215070noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-494614934984144614.post-13175686443081961952010-08-11T09:07:10.538-04:002010-08-11T09:07:10.538-04:00oh my this video...I have no words for it. My daug...oh my this video...I have no words for it. My daughter has a chromosome 4q deletion and suffers from hypotonia, lack of appetite, breathing/airway issue (has a trach)development delays and the list could go on. Even though she does not have prader-willi I think this might have touched me the same way it touched you... you will get through this and both you and your daughter will thrive together.<br /><br />Your new dedicated follower :)Tanyahttps://www.blogger.com/profile/14504757682274591553noreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-42909862673453143152010-08-11T09:02:33.009-04:002010-08-11T09:02:33.009-04:00oh my this video...there are no words. my daughter...oh my this video...there are no words. my daughter has a 4q chromosome deletion, she suffers from hypotonia, lack of appetite, breathing/airway issues (has a trach) development delays. Even though she doesn't have prader-willi I think this video touched me the same way it touched you. Your daughter is beautiful by the way and I look forward to following your blog.Tanyahttps://www.blogger.com/profile/14504757682274591553noreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-5012603231852431642010-07-23T02:21:49.443-04:002010-07-23T02:21:49.443-04:00I remember watching this video when Lucy was aroun...I remember watching this video when Lucy was around a year old so I understand exactly how it makes you feel.<br />As time goes on although I am aware of the challenges ahead,they dont keep me awake any longer and a kind of acceptance kicks in.<br />You seem like an amazing mum and Lillian will thrive and achieve just from the love you give herAndrew,Sally,Megan,Daniel and Lucyhttps://www.blogger.com/profile/01376454810331205416noreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-43786416284814674062010-07-21T03:22:11.107-04:002010-07-21T03:22:11.107-04:00Just stopped by because I've seen Lillians &qu...Just stopped by because I've seen Lillians "button" on other blogs I've visited. The PWS also caught my eye. I went to school with a young man with PWS back in the 80's; also had a cousin with the disorder, so I know something of the challenge it presents. Read a few of your older blogs, too. It's definitely okay to seek help if you need it: care for the caregiver is essential. You have a tremendous job ahead of you, but like you said yourself Lillian's sweet face and a lot of faith will get you through each step. You probably have more prayer warriors than you realize. I will be one of them, too. -EW<br />http://eastlynandcompany.blogspot.comEastlyn and co.https://www.blogger.com/profile/08241019391236666673noreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-6784958450088074532010-07-20T10:07:27.820-04:002010-07-20T10:07:27.820-04:00Praying for you... I know that being a mom to a ne...Praying for you... I know that being a mom to a new baby is challenging and more so when they have special needs. Hang in there, because you ARE her biggest advocate:)Mrs. Palisinhttps://www.blogger.com/profile/04084129146234412207noreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-24779436382621040752010-07-19T18:06:34.822-04:002010-07-19T18:06:34.822-04:00((hugs)) One day there will be a cure for the hung...((hugs)) One day there will be a cure for the hunger. Until then you will be a wonderful mom. And Lillian with be telling everyone how much she love YOU.Shellhttps://www.blogger.com/profile/06590452198157145771noreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-66506306994615595282010-07-17T12:22:24.865-04:002010-07-17T12:22:24.865-04:00Wow... that's powerful. There is so much love...Wow... that's powerful. There is so much love between them. You are such a strong woman adn you take such great care of Lillian. Lots of love to you.JennloveAustinhttps://www.blogger.com/profile/16423835659797841854noreply@blogger.comtag:blogger.com,1999:blog-494614934984144614.post-67848482257222165482010-07-17T07:55:25.203-04:002010-07-17T07:55:25.203-04:00Oh darling, none of us can control our children...Oh darling, none of us can control our children's future. I know you and Phil and making sure Lillian has every opportunity in life and is making sure she gets the best treatment for her PWS.<br /><br />You are an amazing and wonderful Mom and we all love you xoxoMelaina25https://www.blogger.com/profile/10038762649811825748noreply@blogger.com