tag:blogger.com,1999:blog-10631378.post112325356757072994..comments2023-05-29T08:05:47.410-04:00Comments on Hard Boiled: A Donor Egg Blog: Lots of test resultsBeth Grayhttp://www.blogger.com/profile/12412707705056624736noreply@blogger.comBlogger14125tag:blogger.com,1999:blog-10631378.post-1123708236425488342005-08-10T17:10:00.000-04:002005-08-10T17:10:00.000-04:00I, too, had a baby with spina bifida. I found out...I, too, had a baby with spina bifida. I found out when I was 5 months pregnant. My husband and I were considering the MOMs study but after much soul searching we decided against it. My son was born on christmas eve of 2004 and he has already proven a lot of doctors wrong. Have faith and just know that every thing happens for a reason and God doesn't give us more than we can handle.<BR/><BR/>J's MommyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123626332898304492005-08-09T18:25:00.000-04:002005-08-09T18:25:00.000-04:00Dear Bee,Thank you for posting this update. I am s...Dear Bee,<BR/><BR/>Thank you for posting this update. I am so happy to hear that you received some good news. Your little girl seems so feisty. <BR/><BR/>I think of you alot and I will continue to keep you and your family in my prayers.<BR/><BR/>AdeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123550996207044162005-08-08T21:29:00.000-04:002005-08-08T21:29:00.000-04:00Just sending my prayers and wishes along again. I...Just sending my prayers and wishes along again. I think of you so often .. and send you as much strength as possible. I live in a suburb of Philly (as you probably remember) and can help you, should you need anything at all. You are a special person .. and your daughter is very lucky to be born into your love and guidance.<BR/><BR/>My love and support, my friend.<BR/>Megan (from the DE Board)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123511752752928722005-08-08T10:35:00.000-04:002005-08-08T10:35:00.000-04:00Sending lots of good thoughts to you and your litt...Sending lots of good thoughts to you and your little girl. I hope somehow, you can get into that study. I'm so happy there was at least some postitive news. Hang in there.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123480000409697002005-08-08T01:46:00.000-04:002005-08-08T01:46:00.000-04:00I just wanted to tell you a story that may give yo...I just wanted to tell you a story that may give you hope. Several years ago, I did ballroom dancing as a hobby, and my dance partner was a very handsome, intelligent, and talented young man. We got to talking once, and he said he had been born with spina bifida. My jaw about dropped to the floor. This guy was about the most agile person I've ever known! I didn't learn details about his condition, but he did say "had a few mild problems" as a child, but was able to overcome them. And how! I don't dance anymore, but I know this young man is now managing a well-known dance studio and is very respected in the ballroom dancing world. Pretty amazing!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123375238333696332005-08-06T20:40:00.000-04:002005-08-06T20:40:00.000-04:00I just read part of your blog about your baby havi...I just read part of your blog about your baby having Spina Bifida. I am a 27-year-old woman with Spina Bifida and I can assure that while your child's life will have certain challenges, it can be a full, rich life. I know that having a baby with a birth defect is not what you had planned, but I believe everything happens for a reason. There is a reason that this baby is being given to you and your husband. I don't know if you feel comfortable with this, but can I make a suggestion? Whenever my parents learned of a family who discovered they were expecting a child with Spina Bifida, my parents would buy the family the James Dobson book "When God Doesn't Make Sense." I have yet to read it but from what I understand, it helps deal with the process. I would also invite you to take a look at my personal Web site. It shows that a person can be successful AND be severely disabled. The addy is:http://www.geocities.com/newslady72712/newslady72712.html<BR/><BR/>God Bless, <BR/>JamieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123360323509579062005-08-06T16:32:00.000-04:002005-08-06T16:32:00.000-04:00Hey, Bee - I used to work with Dr. Adzick YEARS ag...Hey, Bee - <BR/>I used to work with Dr. Adzick YEARS ago when he was at UCSF doing research on sheep. Not that he would know who I am, I was one of the veterinary nurses who took care of his sheep. He was doing fetal surgeries on them, studying this very problem. I remember when he moved from UCSF to CHOP, because I also moved from SF to Philadelphia to attend veterinary school in Philly. If you do get into the study, you should know he has been working on this problem for a long time, and has done really amazing stuff. Best of luck.webhillhttps://www.blogger.com/profile/05938934194973454729noreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123359737090740032005-08-06T16:22:00.000-04:002005-08-06T16:22:00.000-04:00I was born with myelomeningocele (spina bifida), a...I was born with myelomeningocele (spina bifida), and have tethered spinal cord. The doctors told my parents I would never live. Then they told them I would never walk, and I would be "retarded". In my case, I am fully ambulatory. I have a wonderful life, work for a nonprofit, am working on a graduate degree, and love every moment of life! There certainly have been difficulties, and several surgeries, but I wouldn't trade my life for anything. I have learned so much! I don't define myself as "suffering from spina bifida". I am a person who happens to have spina bifida. There is much more to my life. It has been an incredible journey, and I am not done yet! And there have been so many advances in medicine since I was born. I don't think they can ever know for sure how things will turn out, so please do not give up-There is always hope!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123313703636479712005-08-06T03:35:00.000-04:002005-08-06T03:35:00.000-04:00Glad to see you updated. I've been thinking of yo...Glad to see you updated. I've been thinking of you and your little girl a lot. It sounds like you got some good news in all of this. Here's hoping for more.<BR/><BR/>Take care.chrishttps://www.blogger.com/profile/07455026458904632093noreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123285087037775472005-08-05T19:38:00.000-04:002005-08-05T19:38:00.000-04:00Bee,It sounds as if your little girl is a fighter...Bee,<BR/>It sounds as if your little girl is a fighter and doing so much better than you originally thought. I am going to chalk it up to all those powerful positive thoughts beaming to her all of the time now...<BR/><BR/>I also wanted to tell you that I had placent previa- almost complete at 20 weeks. It had pulled up a little by 23 weeks and pulled up completely by 26 weeks, although it was still low-lying. I was on bedrest but for pre-eclampsia and I never had any bleeding or complications from it.<BR/><BR/>So many ladies on the board have had this and had it pull up- I will keep my fingers crossed that you and the little one qualify for the study.<BR/><BR/>PiperAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123283916057333942005-08-05T19:18:00.000-04:002005-08-05T19:18:00.000-04:00Bee,I just know things are going to work out,its a...Bee,<BR/><BR/>I just know things are going to work out,its already starting, your little angel doesn't have it as bad as you first believed. You and DH be guarded and let the rest of us be optimistic for you. Glad you are working with CHOP, I truly believe that you will be able to get in there. I used to work at HUP, so I am a little familar with the people who work at CHOP, they are very special people.<BR/><BR/>If I can do anything for you when you come to CHOP, don't know if you live around the area, but if you need someone or something, you know where to find me, don't hestitate to ask.<BR/><BR/>God be with you.<BR/>Wishing4ababyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123275646294516262005-08-05T17:00:00.000-04:002005-08-05T17:00:00.000-04:00Hi Bee -So good to hear that your little girl's hy...Hi Bee -<BR/><BR/>So good to hear that your little girl's hydrocephelus is mild. Bodes well for her, I'm sure. Love to read your updates and anxious to hear how things are going for you, your husband and baby girl. Please remember that I am always here if you have anymore questions, concerns or just want to talk. sbmoms@gmail.com.<BR/><BR/>Take care.<BR/><BR/>Amy :)Amy Linderhttps://www.blogger.com/profile/15496005772917020822noreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123273509845101632005-08-05T16:25:00.000-04:002005-08-05T16:25:00.000-04:00Do you want me to see what I can do about having D...Do you want me to see what I can do about having Dr. Adzick see you at CHOP (not CHOPS)? Working as a fellow attending physician there for 12 years should count for something.<BR/><BR/>E-mail me and I'll ask him if you'd like.Teendochttps://www.blogger.com/profile/09351506731552454057noreply@blogger.comtag:blogger.com,1999:blog-10631378.post-1123264400944804892005-08-05T13:53:00.000-04:002005-08-05T13:53:00.000-04:00Still praying and hoping everything goes well. I w...Still praying and hoping everything goes well. I wish you didn't have to go through this. It's so fu**ing unfair.Anonymousnoreply@blogger.com