tag:blogger.com,1999:blog-4048186698864359724.post5681621679316881799..comments2024-01-09T02:22:47.782-08:00Comments on Sometimes I'm Actually Coherent: Word Of The Day Is "Semilobar Holoprosencephaly"Timothy Powerhttp://www.blogger.com/profile/06081922327870257027noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-4048186698864359724.post-33521557431286024112015-09-30T11:07:46.307-07:002015-09-30T11:07:46.307-07:00My grandson had this too. My daughter went on to d...My grandson had this too. My daughter went on to deliver a perfectly healthy boy the following year but this broke all of out hearts. We lost our boy. My heart goes out to you Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-86078275537160991462014-12-17T19:37:04.397-08:002014-12-17T19:37:04.397-08:00Hello everyone, my name is Monique. I have a 7 mon...Hello everyone, my name is Monique. I have a 7 month old son who was diagnosed with semilobar holoprosencephy. He does not have any trisomy or anything according to all of his chromosome and genetics tests. Everything came back normal. I am praying for everyone that's going through this or has been through this, and may God continue to be with us all. I just want to know what to kind of look forward to in my for my sons future. If Any one of you have a baby with the same diagnosis, and your baby is living and doing well or close to it, PLEASE,PLEASE give me a call 901-859-0274Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-16103693692538983642013-09-30T13:46:50.454-07:002013-09-30T13:46:50.454-07:00I just found out about this issue with my baby. We...I just found out about this issue with my baby. We have 3 days to decide whether to keep her or abort her. Please contact me at babyneedhelp@gmail.com. Is there any chances that she will have any life?babyneedhelphttps://www.blogger.com/profile/01350104590807799462noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-46026459433628206792012-04-27T06:43:13.557-07:002012-04-27T06:43:13.557-07:00I know what your going thrwo i lost my son two feb...I know what your going thrwo i lost my son two feb 12,2012 he was born feb 11,2012 he had what your little girl had i was reading it and it was like i was hearing it form the doctors all over aginAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-89878874027988760192012-01-01T21:00:01.232-08:002012-01-01T21:00:01.232-08:00So glad u shared your thoughts. I have a little bo...So glad u shared your thoughts. I have a little boy who is now 13 months old, whom at 3 months was diagnosed with semilobar holoprosencephaly. My last ultrasound at 18 weeks didn't show any signs of HPE. Other than not being able to talk, crawl, sit up on his own, or walk, he is the happiest baby I know. Kids with disorders surprise you. If anyone wants to talk, u can contact me by email lilducklin_2004@yahoo.com.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-81346380057908591252011-07-28T18:24:11.112-07:002011-07-28T18:24:11.112-07:00my child was just born and i think he has semiloba...my child was just born and i think he has semilobar holoprosencephaly reading everyone's comments has helped me prepare for the worst and it would really help if i had someone to talk to who has been through the same thing... PLEASE CONTACT ME MY NUMBER IS 318-609-8049Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-53414359152034035462011-03-10T05:29:38.876-08:002011-03-10T05:29:38.876-08:00I want to thank you for not terminating the pregna...I want to thank you for not terminating the pregnancy. Me and my husband were in the same position almost two years ago. Exact same disease. JoJo had Semilobar Holoprosencephaly and Trisomy 13. The doctors told me that he wouldn't live more than two days and that the pregnancy was threatening my life. Unfortunely we decided to terminate the pregnancy. I have so many regrets. I am a Christian as well and regret not having faith and killing my baby. I sometimes hate myself for what I did. I had three days to decide what I was going to do with the pregnancy. I was three days from 20 weeks and I always wonder what would have happened if I missed my ultrasound appointment that day. By law I wouldn't have been able to terminate my pregnacy. I had nobody supporting what I needed and wanted to do. All of my family told me that I had to do it. I had three kids before JoJo and everyone told me it wasn't worth me losing my life. I told my husband that it was going to kill me either way. Whether I terminated the pregnancy or decided to keep JoJo. Today I regret it so much...so much...and I wish you the best with your baby. I will pray and pray for you and your family. God Bless..Tabatha F.noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-28307095023107473072010-12-27T14:29:18.587-08:002010-12-27T14:29:18.587-08:00Hi There,
I found your post through a google sear...Hi There,<br /><br />I found your post through a google search. My 6 month old daughter was just diagnosed with Semilobar Holoprosencephaly. Needless to say, it's been quite the week! <br /><br />I wonder if you'd be willing to get in contact with me or my husband if you think you have any thoughts or anything to share with us. My email address is Rachelpatten09@gmail.com. We are finding it challenging to get reliable information or support because it seems as though this is pretty rare.<br /><br />Thanks :)<br />RachelUnknownhttps://www.blogger.com/profile/11986031804932856218noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-21561730826076527642010-07-10T10:53:31.625-07:002010-07-10T10:53:31.625-07:00I read, your blog, & all I can say, is that ev...I read, your blog, & all I can say, is that even though we don't know why our Lord does the things He does, He has a reason. As painful as it can be sometimes.<br /><br />I am 23 years old & I was born with Lobar Holoprosencephaly. I was born with cleft lip/palate & central incisor, (just 1 front tooth) & a mild form of Spina bifida. I know how it feels from the kid's point of view of constantly being under the barrage of Drs, Specialists & therapists. <br />Mine is also T13, passed down from my mom. I have a brother & a nephew that also show signs of HPE, but just because we have that diagnosis, doesn't mean that we'll stop fighting, it just means we have to fight harder to achieve our goals. <br />I now have a lil 5 yr/o girl that doesn't show any signs of having HPE, but when i was pregnant with her, all my doctors said that she had 95% chance of being born with Lobar HPE. <br />My geneticist just said that even though all the Drs in the world can say that my child has 95% chance of coming into the world with an abnormality, God reserved the last 5% for His final say.<br /><br />May the Lord Bless you & your family.<br /><br />P.S. thank you for sharing your thoughts with everyone. It helps us feel that we truly aren't alone when it comes to dealing with HPE.Claudia Santamariahttp://www.facebook.com/logansbetanoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-91699240194974154472009-11-10T07:15:33.819-08:002009-11-10T07:15:33.819-08:00I AM THE MOTHER OF A DAUGHTER THAT I LOST TO THIS ...I AM THE MOTHER OF A DAUGHTER THAT I LOST TO THIS SAD DISEASE 9 YEARS AGO YESTERDAY,, I HAVE BEEN SO DISTRAUGHT, I AM SO GLAD THAT I READ YOUR STORY AND KNOW THAT I AM NOT ALONE IN MY PAIN. CINDY/LOUISANAAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-46038389394110797632009-06-11T10:04:56.505-07:002009-06-11T10:04:56.505-07:00My son's date of birth is Nover 2008. At 28 we...My son's date of birth is Nover 2008. At 28 weeks of pregnency, we found that our baby will not be normal. He will have lip and cleft pallette, absent nose, abnormal genetilia, heart and kidney problems. Karotype (Amino test) was normal and he was not trisomy. The brain is not normal. He has semi-lobar holopresencephaly. Now he is almost 7 months old and seems to have all the disease which people described above. He also has seizure. The most difficult thing as a parent is to see our kid suffering with seizure. When he has seizure attack, we feel helpless. May God help us.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-80780587576299124302009-04-15T22:40:00.000-07:002009-04-15T22:40:00.000-07:00I type Holoprosencephaly in my search box once or ...I type Holoprosencephaly in my search box once or twice a month, and this time I happened upon this blog. I see that it was written last year, but I felt compelled to comment on it. I have a three yr old daughter who was diagnosed with Lobar Holoprosencephaly, Choanal Atresia, and Diabetes Insipidus three days after she was born. My husband, Tim, and I had decided not to have the amnio with Eyvonne. The decision was mad early on in both pregnancies that we would pass on the amnio due to the spontaneous abortion that I could have suffured. <br /> I prayed before my first born for the Lord to make me ready, and bless my womb. I had four miscarriages before then but I held on to my faith. Lil Tim was born months later and healthy. I panicked from time to time and when he was born I knew he was my miracle. Three days before Lil Tim turned two, I drove his little sister home from St. Louis, she was seven weeks old. <br /> God is so good. I love the chance to get to express that, but I love it even more when someone else expresses it. <br /> Coincidently there is another little boy in my town of 6500, he has Semilobar too. His name is Frankie and his mother was told he wouldn't live a day, then six months, then to be a year, and when Frankie turned three we celebrated. Blessings to your family Tim <br />angelsincere@live.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-90034579575780377552008-12-27T19:57:00.000-08:002008-12-27T19:57:00.000-08:00Tim & Tonya,You are not alone.. please know th...Tim & Tonya,<BR/>You are not alone.. please know that.<BR/>There is a T13 (Trisomy 13) world out there. Many with happy, happy children and many with memories of their beautiful children.<BR/>I was contacted also from the lwt13 site because our son Josiah, will be 11 in Jan and has holoprosencephaly. He rides a bike, crawls up and down the stairs, on and off the couch, he goes where he pleases, he uses a walker and plays on a computer at school. He is a full T13 and has just about everything on the "diagnosis list". We adore him, as we do our other children. If you find the time, you can see him at: http://www.trisomy13survivors.com/<BR/>We know the fear, heartache, and all that you are feeling, we will keep you in prayer. <BR/>All the doctors said he'd be a "vegetable"... and you know what? They were right! He is our sweetpea!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-69481278743959390032008-12-27T12:38:00.000-08:002008-12-27T12:38:00.000-08:00You're in my prayers too.You're in my prayers too.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-17292251209292235012008-12-27T09:39:00.000-08:002008-12-27T09:39:00.000-08:00So, after I posted my comment above, my husband sa...So, after I posted my comment above, my husband said, "I know that guy! Tim and his wife post on my blog." Well, small blog world!<BR/><BR/>Praying for you all.Kendra Fletcherhttps://www.blogger.com/profile/11762184032404428343noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-44222561680907319582008-12-27T09:36:00.000-08:002008-12-27T09:36:00.000-08:00Just found your blog through a search of "things t...Just found your blog through a search of "things to do with kids in northern california". I think we've exhausted them all and were looking for a little road trip idea for the day.<BR/><BR/>Anyway, glad to find you here, so close to us- we're down the road outside of Turlock. The story of your sweet baby growing right now has touched me, and I'll be praying for you all.<BR/><BR/>We walked a precarious road this summer as we watched our then-7-week-old fight for his life. God was very, very near. We grew spiritually by leaps and bounds, and we would never trade that trial for a stagnant existence. May God cover you with His peace that passes all understanding.<BR/><BR/>~KendraKendra Fletcherhttps://www.blogger.com/profile/11762184032404428343noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-56780940516023898252008-12-24T23:40:00.000-08:002008-12-24T23:40:00.000-08:00Timothy:Long time since I have commented. You are...Timothy:<BR/><BR/>Long time since I have commented. You are in our (Eva and I) thoughts and prayers.<BR/><BR/>Regardless of what happens, everything is going to be okay.Jarrod J. Williamson, Ph.D.https://www.blogger.com/profile/01727204446234372822noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-2397522193396527582008-12-24T12:16:00.000-08:002008-12-24T12:16:00.000-08:00Tim and Tonya,I am so very sorry...My daughter Ser...Tim and Tonya,<BR/><BR/>I am so very sorry...My daughter Serena was diagnosed by amnio with trisomy 13 eleven years ago, and I can still remember how very difficult this all is...ThereseAnn from the Living with Trisomy 13 support site forwarded me your blog and I wanted to offer my help and support if you needed it...I am a RN who works with prenatal families whose children receive a life-limiting diagnosis - many of them with trisomy 13 - and if there is anything I can do for you - any questions I can answer, or anything else you need, please let me know. You can reach me by my email: laurie-beth@livingwithtrisomy13.org or through the LWT13 site.<BR/><BR/>My thoughts are with you and your family...<BR/><BR/>Laurie-Beth Brennan RN GC-C<BR/><BR/>www.missfoundation.org<BR/>www.livingwithtrisomy13.org<BR/>www.perinatalhospice.orgLaurie-Bethhttps://www.blogger.com/profile/13706014801339378295noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-72000413404770017672008-12-24T01:19:00.000-08:002008-12-24T01:19:00.000-08:00Tim & Tonya, Our hearts are soo very sad for y...Tim & Tonya,<BR/> Our hearts are soo very sad for you. We both cried when we read the news. I wish there was something I could say that would make any of this any easier, but I know that is not possible. <BR/>We hurt because your hurting. <BR/>If either of you need anyone to cry with, be mad with, laugh with or anything at all we would be more than happy to be there for you.<BR/>We don't know why God gives us people for a short season, but He does have a reason. And she will know your love for her. And she will be made whole when God calls her. <BR/>You are our family and we love you all oodles.<BR/>Love,<BR/>Joe & LeilaniAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-34299436198179415812008-12-23T22:15:00.000-08:002008-12-23T22:15:00.000-08:00I wish I could respond to each of you individually...I wish I could respond to each of you individually, but Christmas chores await, so I'll just reiterate my many thanks for all your prayers and kind wishes. We're very honored and encouraged by your concern for us, our family, and our baby. We will definitely keep everyone informed as new information comes in, and we definitely promise to hang in there.Timothy Powerhttps://www.blogger.com/profile/06081922327870257027noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-5667595785149275492008-12-23T20:28:00.000-08:002008-12-23T20:28:00.000-08:00Tim- I'm lost for words, there's nothing I've been...Tim- I'm lost for words, there's nothing I've been through that could prepare me to be any comfort to you. Have faith, that's all I can say. Here, I can say this: I think you're exactly right, that all you can do is love your child for who she is, and that is an inspiration to me. To love her for who she is now and who she will be, to provide the comfort and warmth that she deserves because she's your child. That is a great role model to the rest of us, a powerful one. I pray for you, I pray for your child, and I pray that those of us who follow can be as strong as you.Roger Zhttps://www.blogger.com/profile/18237595194853321052noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-22381697359374713882008-12-23T19:02:00.000-08:002008-12-23T19:02:00.000-08:00My kids have radar. I sit down to read my fave blo...My kids have radar. I sit down to read my fave blogs and here they come with every question on the planet and then some. And as I read this, it is impossible to get irritated with this process. Now they think I'm nuts that I want to hug them every time they come over.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-20447295811120246472008-12-23T16:51:00.000-08:002008-12-23T16:51:00.000-08:00There are MANY internet resources to help you with...There are MANY internet resources to help you with whatever happens. Once you have a correct diagnosis, google "carry to term [trisomy 13]" (or whatever condition it is) and it pops up with all sorts of support pages (including rundowns for your family and friends so that they know what's going on and don't go silent out of fear of saying the wrong thing.)<BR/><BR/>I will keep praying for you. May you be able to experience the joy of your daughter, and may it be for some time.B. Durbinhttps://www.blogger.com/profile/07559705448147986730noreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-25142914675831177892008-12-23T16:12:00.000-08:002008-12-23T16:12:00.000-08:00You are all in our thoughts and prayers. Thanks fo...You are all in our thoughts and prayers. Thanks for sharing your blog with us.<BR/>God Bless,<BR/>Snow FamilyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4048186698864359724.post-45439236935560657712008-12-23T15:32:00.000-08:002008-12-23T15:32:00.000-08:00Tim, tears fill my eyes as I read your blog. I'm s...Tim, tears fill my eyes as I read your blog. I'm so glad this baby has you guys to love her and think of her through this tough process. Many of us can't understand your exact emotions, but know we are lifting them up in prayer.Griselda Johnsonhttps://www.blogger.com/profile/06674874206843455358noreply@blogger.com