tag:blogger.com,1999:blog-955373852857020316.post7552734210625011199..comments2023-10-07T05:15:05.567-04:00Comments on Just Another Day...: Q&A with a 20-year-old HLHS College Student!Unknownnoreply@blogger.comBlogger12125tag:blogger.com,1999:blog-955373852857020316.post-28079975526071454422014-02-19T23:34:45.972-05:002014-02-19T23:34:45.972-05:00Awe this was such a nice blog! Thank you for shari...Awe this was such a nice blog! Thank you for sharing. I started a blog a few yrs ago but never really wrote much on it. But I want to start blogging more now. I've been searching for HLHS survivors. It's always good to hear about those of us who are still doing well. Anonymoushttps://www.blogger.com/profile/15510907368275209524noreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-85936654512309999152012-06-14T03:18:12.733-04:002012-06-14T03:18:12.733-04:00Holly Saunders Mckell..lived to age 37 or 38 w HLH...Holly Saunders Mckell..lived to age 37 or 38 w HLHS. She developed lung and liver failure due to her CHD..the last few years of her life...due to the comorbitities...and weakened condition...she was rejected for transplants. She died in 2011. You can read about her life ....she had a blog on blogger called the Mckell spot...GOOGLE her nameAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-56488585457545409912012-05-15T11:25:20.625-04:002012-05-15T11:25:20.625-04:00Hi my name is ashley anderson and am 15 years old ...Hi my name is ashley anderson and am 15 years old my brother has hlhs and he is now 12! we look just alike we even act alike i love him and my parents treat us the same to. My brother has had 6 open heart surgeries it is scarey! i cry nobody wants to see your brother like that. Some days my brother comes home from crying from school he ends up laughing in the end because he knows this will make him stronger for him to become a WWE SUPER star! since he cant play sports he is a manger to wrestling and basketball! My mom is trying to get all the kids with the same problem and let them know that their not the only oneAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-3687701467257168572011-12-31T01:36:24.454-05:002011-12-31T01:36:24.454-05:00My 18 yr old daughter is an HLHS survivor too!! Sh...My 18 yr old daughter is an HLHS survivor too!! She is amazing. She graduated from high school in June. She did struggle with learning issues and speech and language delay but now talks (non-stop!!). She drives, she's working as a nannie. Planning some college next yr in a program suited to young adults with learning issues. She had her Norwood at 30 hrs old, her Glenn at 5 months and her Fontan at 3 yrs. Since then her health, considering the severity of her heart, has been pretty darn good. We were actually happy when she had her appendix out at age 14 and broke her ankle at age 15 and needed surgery for that!! Those were somewhat normal hospital experiences!! We went to BCCH in Vancouver, B.C. for those surgeries and it always felt like coming home. She graduates to the adult cardiologist in January 2012!! Her own paediatric cardiologist will follow along with the new doctors for a few yrs!! Happy, healthy new year to all HLHS families!!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-10972117179637492842011-12-08T14:47:34.370-05:002011-12-08T14:47:34.370-05:00My granddaughter is a HLHS survivor. She is 18 mth...My granddaughter is a HLHS survivor. She is 18 mths old and and is doing very well. She just had her G-tube removed even though we haven't used it in over 6 mths. I also, found myself glued to the televison with an intense interest in the story about the Peerless family. I was so disappointed that it was presented as "no big deal". It's an extremely big deal. It's a rough road to travel for babies born with this condition. But with all the advancements in medicine they have a much brighter prognosis and future.<br /><br />Even though I wish our Lilly didn't have HLHS we wouldn't take the world for her. She is such a blessing. God gave her to us for a reason and we thank him everyday.<br /><br />I wish all HLHS much success and love.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-23643613220967133952010-07-28T04:21:07.727-04:002010-07-28T04:21:07.727-04:00Hi! My name is Lauren and I'm an almost 23yr o...Hi! My name is Lauren and I'm an almost 23yr old CHD survivor. I have Tricuspid Atresia, HRHS.<br /><br />Someone posted the link to this interview on their blog. I read it and that is so awesome you found a HLHS adult that gave you hope!<br /><br />When reading it there is one thing Tom got wrong, the oldest living HLHSer is in the mid 30's to early 40's.<br /><br />Here is a link to one of those HLHS Adult's:<br />http://www.wedu.org/Content/VideoPop/SH_March_2008.aspx<br /><br />Skip to 19:45 in the video, that starts off Brain's story. He was 32 when this aired, he is 34 now and has HLHS. I thought you might like to see this.<br /><br />God Bless Tom! And your wonderful family including your brave and amazing CHD warrior, Chase!<br /><br />Heart Hugs!<br /><br />With LOTS of HOPE, Love, and Faith,<br />Lauren (CHD Survivor)<br /><br />P.S.: You can talk to me anytime!<br /><br />Blog: www.laurensheart.blogspot.com<br />E-mail: Sweeetie2516@aol.comLaurenhttps://www.blogger.com/profile/16168976317111099445noreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-1266840279425363292010-07-22T20:10:14.429-04:002010-07-22T20:10:14.429-04:00Just wanted to let you know that I pasted your pos...Just wanted to let you know that I pasted your post on my BLOG because I thought your post was so AWESOME and encouraging! Thank you for taking the time to share this... it was great to read..... I had to pass it on.... <br /><br />Tina B.<br />Mom to Anna Grace (HRHS)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-51399550806872213152010-07-22T16:11:54.622-04:002010-07-22T16:11:54.622-04:00How amazing is this guy!!! Thanks for sharing his ...How amazing is this guy!!! Thanks for sharing his words of encouragement and story. It brought me to "happy tears" to read how well-adjusted and normal he is. I always worry about Maddie's future and reading this, just brings that hope and calmness I need. What great questions you asked too...all of them are ones I've wondered about. Have a great weekend!Katiehttps://www.blogger.com/profile/12749308200093222013noreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-21596480402965207662010-07-22T12:25:19.697-04:002010-07-22T12:25:19.697-04:00What a great post and thank you so much for sharin...What a great post and thank you so much for sharing it with us! I enjoyed hearing his perspective on this journey. I have been fortunate enough to talk with other adult CHD survivors and it is such a gift to be able to ask them questions. I have yet to meet an adult living with Logan's defects and had smilier surgeries. Which worries me at times but I know that there has to be someone out there like him. Glad you were able to talk with him!Stefeniehttps://www.blogger.com/profile/04278714232697499851noreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-12019973736595617482010-07-22T09:04:48.901-04:002010-07-22T09:04:48.901-04:00That is so awsome to read! What a great attitude a...That is so awsome to read! What a great attitude and his responses make me feel good about our HLHS kids! Thanks so much for posting.<br /><br />Jennifer<br />Mommy to Colin, 15 months, HLHSJenniferhttps://www.blogger.com/profile/01362098752808537211noreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-41580164043122941402010-07-22T08:47:45.327-04:002010-07-22T08:47:45.327-04:00Amazing! I got an email from him as well. I didn&#...Amazing! I got an email from him as well. I didn't want to copy and paste it without his permission, but that is what my "such hope" post was about! He is such a blessing! :o)Jill https://www.blogger.com/profile/05480998926938144262noreply@blogger.comtag:blogger.com,1999:blog-955373852857020316.post-76082012959905119162010-07-22T08:34:13.275-04:002010-07-22T08:34:13.275-04:00How great was that!?!? I love his attitude. Just...How great was that!?!? I love his attitude. Just awesome. I'm going to link this to my blog because it is too good not to share. Thanks Kathy!Jennyhttps://www.blogger.com/profile/03815949154302796501noreply@blogger.com