tag:blogger.com,1999:blog-5425755511113562733.post8956763628856893659..comments2023-10-26T08:35:13.668-04:00Comments on Stephen's Journey: Bad Day in BaltimoreLindseyhttp://www.blogger.com/profile/15880777707811843864noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-5425755511113562733.post-49768684992093278082010-10-29T16:34:07.921-04:002010-10-29T16:34:07.921-04:00I am so sorry to read your story & in particul...I am so sorry to read your story & in particular, about this one very bad day. Just a few thoughts... perhaps amnio-infusion can help give Stephen's lungs the room they need to grow. Also, UAB (University of Alabama, Birmingham) is the premier lab for genetic testing for ARPKD. Their website is very instructive. If they can identify both mutations (yours & your husband's), they can assist with diagnosis in future pregnancies either thru CVS, amnio, or even pre-implantation genetic diagnosis (PGD) during the IVF process BEFORE you get pregnant.<br /><br />Don't be afraid to ask tons of questions and continue seeking second (and third) opinions as you go thru this journey. I found that most doctors are NOT familiar with this disease and several gave us incorrect information, rather than just admitting that they didn't know! You are Stephen's best advocates.<br /><br />Best wishes to you and your family.<br /><br />--Anne (another ARPKD mom)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5425755511113562733.post-26598465875256752422010-10-29T11:30:21.616-04:002010-10-29T11:30:21.616-04:00We're thinking of you every day & hoping f...We're thinking of you every day & hoping for the best!<br /><br />Kim & BrianKimnoreply@blogger.comtag:blogger.com,1999:blog-5425755511113562733.post-26297215495703469532010-10-28T21:46:57.761-04:002010-10-28T21:46:57.761-04:00Lindsey and Billy
Read your Blog tonight and want ...Lindsey and Billy<br />Read your Blog tonight and want you to know you are in you are in my thoughts and prayers. Even though your news today was discouraging I continue to pray for a miracle.<br />Mary ElizabethAnonymousnoreply@blogger.com