tag:blogger.com,1999:blog-8207455552139284342.post6129175159268096926..comments2024-01-24T08:47:26.674+08:00Comments on Faith, Hope and Joy: Ears and FeetNicolehttp://www.blogger.com/profile/10147429806244730166noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-8207455552139284342.post-55051449696551778622012-01-09T20:51:31.611+08:002012-01-09T20:51:31.611+08:00Hi Tara - I am SO glad to hear that. Maddy's c...Hi Tara - I am SO glad to hear that. Maddy's chest ratio was always between 0.7 and 0.8. Many lethal forms have ratios of closer to 0.5. I can speak from experience when I say that a ratio of 0.7 is definitely not necessarily lethal!! <br /><br />I know many people with babies with skeletal dysplasia who went through pregnancy being told that their child had a lethal form and it was wrong. Most doctors have never experienced a case before, and even those that do can be wrong as well. I am so glad that you got a 2nd opinion!! I think of you and Piper often xoxNicolehttps://www.blogger.com/profile/10147429806244730166noreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-21573284513199518802012-01-05T21:23:14.169+08:002012-01-05T21:23:14.169+08:00Thanks for the best wishes for the New Year! I hav...Thanks for the best wishes for the New Year! I have posted before about my pregnancy. I am now 28 weeks pregnant.On Monday we saw our ultrasound Dr. and he told us that because Piper’s chest ratio is .72 that he felt that her dysplasia is a lethal form. We were crushed but after we left the office I remembered a post from your pregnancy about Maddy’s ratio being about the same and how that number is possible for life outside of the womb. So we sought a 2nd opinion 2 hours away and yesterday we saw an awesome Dr. who gave us a lot of hope. She is an expert on skeletal dysplasia and is writing a chapter to a book on it now. She thought that Piper’s case did not look lethal based on her chest size. THANKS FOR THE INFORMATION that is on your blog. I may not have even gotten a 2nd opinion if I did not remember the .7 ratio that you posted!!! TaraAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-21488225153008709062011-11-24T02:16:53.130+08:002011-11-24T02:16:53.130+08:00My name is Tara - I wrote in yesterday as Anonymou...My name is Tara - I wrote in yesterday as Anonymous about my little peanut Piper. As I was reading your blog I was very touched when you wrote "I am holding onto hope. Hope that my baby girl will be happy. Hope that she will be able to live a long and fulfilling life. Hope that I won't have to lose her before I even have a chance to meet her. But most of all, hope that her life will make a difference somehow..." You were at around the same stage of pregnancy as I am now when you wrote this. You described exactly how I feel at this moment. Maddie's life is making such a difference to me now. I have hope now. Her middle name is now going to be "Piper Hope". I have three sweet daughters – a 3 year old and twin one year olds. Seeing your older daughter with Maddie made me feel so great about my daughters being a part of Piper’s life. THANKS AGAIN!!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-51783751929050551462011-11-23T22:57:04.439+08:002011-11-23T22:57:04.439+08:00Dear "Anonymous", I'm so glad to hea...Dear "Anonymous", I'm so glad to hear that. Please if you read this, email me and join our DD facebook group!! It has been a huge support to me over the past 2 years. All the best with the rest of your pregnancy :) xoxNicolehttps://www.blogger.com/profile/10147429806244730166noreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-64411930257937127392011-11-23T04:23:09.509+08:002011-11-23T04:23:09.509+08:00I am 21 weeks pregnant and found out that our daug...I am 21 weeks pregnant and found out that our daughter (Piper) may have Diastrophic Dysplasia. She has short limbs, a cleft palate, and clubbed feet. This blog has been so interesting to read and is giving me hope for her future. THANK YOU for the inspiration!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-50493531684323303452011-11-07T08:10:17.532+08:002011-11-07T08:10:17.532+08:00Lyla just got ear tubes back in August. She had fl...Lyla just got ear tubes back in August. She had fluid in her ears for months and the ENT told us she couldn't hear! The ear tubes made a huge difference- no more fluid....however she only says dada and nana. She is 13 months. Her doctors say not to worry about that yet. I guess it is a waiting game! Good luck with everything.Lyla Our Little Miraclehttps://www.blogger.com/profile/08559782617017908167noreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-63610002192971444332011-11-04T12:29:19.517+08:002011-11-04T12:29:19.517+08:00I forgot to add - she will be having a "devel...I forgot to add - she will be having a "developmental check up" in relation to speech/hearing and should start some speech therapy soon. So far, she hasn't had speech therapy but I think (hope) she is old enough now to benefit from it... I know that if it is caught early enough, hearing loss doesn't hinder development - but I get impatient knowing that there is a problem that at the moment, we can't really do anything about!!Nicolehttps://www.blogger.com/profile/10147429806244730166noreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-31701891415918088062011-11-04T03:25:08.668+08:002011-11-04T03:25:08.668+08:00Could you have her "receptive language" ...Could you have her "receptive language" (that is, her ability to understand words or sentences that she is not yet able to produce) assessed by a trained developmental linguist? A simple example: Can Maddy pick out a dog from an unfamiliar picture of a group of animals when you say "show me the dog"? If so, then she hears and understands the word "dog" whether she can say it or not. Tests like this can distinguish articulation problems (i.e., physical difficulties with speech) caused by her cleft palate from genuine language delay (i.e., delayed understanding of words and sentences) caused by impaired hearing.<br /><br />An optimistic note: Although hearing is essential for learning language (except sign languages native to the Deaf), very young children catch up on language learning remarkably quickly once their hearing issues are resolved.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8207455552139284342.post-72681497948513412842011-11-04T02:48:43.881+08:002011-11-04T02:48:43.881+08:00That is a terrible wait for hearing tests! I'm...That is a terrible wait for hearing tests! I'm glad you will be able to get an appt soon. I had all the waiting on medical stuff...it gets so frustrating!Amyhttps://www.blogger.com/profile/12199373748547106950noreply@blogger.com