http://msgphoto.com/heartkidsproject/forum/ My Heart: Last 35 Posts en Wed, 07 Jan 2009 04:35:04 +0000 http://msgphoto.com/heartkidsproject/forum/topic.php?id=12#post-26 Thu, 13 Nov 2008 21:29:51 +0000 Filmmaker 26@http://msgphoto.com/heartkidsproject/forum/ <p>Hello,<br /> I'm new here. I'm the father of a 3 year old CHD patient, Selma. She is doing GREAT, and I am blessed to be her father. Her life has inspired me to produce a documentary about CHD. You can see the website here... someoneelsesfilm.com</p> <p>We are also on Facebook so come see us. Feel free to give us input about your ideas for a film like this.</p> <p>We are also working on some new CHD awareness items... a HEARTSTRONG bracelet and CHD ribbon pin.</p> <p>I'll check back and see what's up!</p> <p>Tommy </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=4#post-25 Mon, 10 Nov 2008 13:51:48 +0000 bdeaver 25@http://msgphoto.com/heartkidsproject/forum/ <p>Hey, I am a new member to the website. I haven't read the book yet but I intend to. It's just nice to know there are others out there. I don't feel so alone. I just thought I'd introduce myself. I've had five open hearts and lots of other stuff. If any of you ever need anything just let me know and I'll try to help. O and by the way my name is Briana. </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=4#post-24 Wed, 08 Oct 2008 16:52:25 +0000 Mckenzie 24@http://msgphoto.com/heartkidsproject/forum/ <p>Hi Dylan,</p> <p>My name is Mckenzie and I loved the book that Max has wrote. I have just read it over and over. I guess because it makes me feel alittle bit normal that there are others out there like me. Your story has inspired me so much. Im one of Max's friends on myspace, he even told me about this site. If you have any questions please feel free to ask. </p> <p> Keep in touch,<br /> Mckenzie </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=2#post-23 Sat, 12 Jul 2008 18:58:58 +0000 cdempsey 23@http://msgphoto.com/heartkidsproject/forum/ <p>Hi, my son, Caleb, 20 months old at this time was born with Tetralogy of Fallot. He had his repair at 4 months and aside from maybe needing a valve in his 20s, he is doing amazingly well. I also had a sister who died from Truncus in 1981.</p> <p> I found out about your book from being a member of CHIN. I just wanted to thank you for making such a beautiful and touching book. I got it in hopes of saving it for him, so he has children to look at that are just like him, and go through similar feelings.<br /> I just had to say thank you.<br /> C.Dempsey </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=9#post-22 Sat, 31 May 2008 23:22:31 +0000 kjsorensen 22@http://msgphoto.com/heartkidsproject/forum/ <p>Hi Hal... or should I call you TAZDADDY...? You might have met Jeni my daughter &#38; her sweet husband Nick...they were also fortunate enough to be able to attend the Heart Conference in PA on May 1st-4th...<br /> I am a new member and look forward to getting to know you better...<br /> Post me a note K?<br /> Take Care... Jill </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=11#post-21 Sat, 31 May 2008 22:46:56 +0000 kjsorensen 21@http://msgphoto.com/heartkidsproject/forum/ <p>June 1st, 2008<br /> OMG=Oh My Gosh... It took an arm and a leg to log on...But... I finally DID IT!!! YAHOOOOOO! </p> <p>Hi Everyone, I'm Jill Sorensen ~ Mom to Jeni age 22 with HLHS &#38; recently married to her sweet husband 'Nick' on July 14th, 2007... Jeni is the 4th entry (Starting on page 59) in Max's AWESOME New Book... Isn't it a Beautiful piece of work? We are soooo proud to be a part of Max's work and blessed that he has touched our lives with his extraordinary photography. Thanks again Max...</p> <p>I joined this group to give support and also to receive it...It is my desire to help others by answering any questions... if I can...Since Jen is one of the oldest HLHS kids and a rare survivor of this Congenital Heart Disease, I thought I could share our experiences with others and maybe help with the unknown. I have been compiling my/our experiences over the years and I am contemplating writing Jeni's story...someday...</p> <p>...I have submitted a story of "Jeni's Beginnings" online at the Congenital Heart Information Network web site, and if you are interested in reading about her, please visit this link: <a href="http://tchin.org/portraits" rel="nofollow">http://tchin.org/portraits</a> at the Portrait Gallery, and click on "Updates" or "Name" then find her name "Jennifer (Jeni) Ellen. </p> <p>I am looking forward to meeting all of you out there...so bring on the questions... I think I'm ready...Tee Hee...<br /> Sincerely, Jill Sorensen </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=10#post-20 Sat, 17 May 2008 15:39:13 +0000 TAZDADDY 20@http://msgphoto.com/heartkidsproject/forum/ <p>Thanks Max I read the entry and it helped me understand.I also got you book at the confer and finally sat down lat night and read the whole thing. brought back alot of memories. Hal </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=10#post-19 Fri, 16 May 2008 22:59:45 +0000 maxsgerber 19@http://msgphoto.com/heartkidsproject/forum/ <p>Hi, Hal. Good question. I'm not a doctor, just an internet user, and according to wikipedia it's something that occurs in fetal development and closes itself up within the first three months of life. I'm guessing that's not what happened in your case? </p> <p>Anyway, here's the wikipedia entry:</p> <p><a href="http://en.wikipedia.org/wiki/Foramen_ovale_" rel="nofollow">http://en.wikipedia.org/wiki/Foramen_ovale_</a>(heart)</p> <p>Good luck! </p> <p>msg </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=10#post-18 Fri, 16 May 2008 15:59:42 +0000 TAZDADDY 18@http://msgphoto.com/heartkidsproject/forum/ <p>Just a quik question? can anybody tell me what Pulmonary foramnet oval is in non medical terms. Thanks Hal </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=9#post-17 Fri, 16 May 2008 15:54:55 +0000 TAZDADDY 17@http://msgphoto.com/heartkidsproject/forum/ <p>Hi<br /> My name is Hal I attended the confer. and got Max's book brought back a lot of memories for me.The book was great. I have TGA,VSD,and Pulmonary forament oval. Thank guys hal </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=8#post-16 Sat, 10 May 2008 23:22:18 +0000 maxsgerber 16@http://msgphoto.com/heartkidsproject/forum/ <p>Hey, Jim. Thanks, I did have a good time at the conference, even if it was a little hectic and Southwest Airlines almost lost my lighting gear. I meant to post the images this week but then have been caught up in some other pressing deadlines on magazine work. I hope to have them up on the body of this site fairly soon, in the next few days. </p> <p>msg<br /> \ </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=8#post-15 Wed, 07 May 2008 20:58:37 +0000 JimW 15@http://msgphoto.com/heartkidsproject/forum/ <p>Max,</p> <p>I hope you enjoyed the conference and got some good images of the attendees. Where are you going to be posting the images?</p> <p>Jim </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=8#post-14 Sat, 26 Apr 2008 14:37:16 +0000 maxsgerber 14@http://msgphoto.com/heartkidsproject/forum/ <p>Oh, and the conference is taking place at the Philadelphia Airport Marriott hotel. Should've said that in the first place, sorry. </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=8#post-13 Sat, 26 Apr 2008 14:36:21 +0000 maxsgerber 13@http://msgphoto.com/heartkidsproject/forum/ <p>i'll be signing books and taking portraits at the Adult Congenital Heart Association's conference in philly next weekend. i'll be at the conference friday, may 2nd and most of the day saturday may 3rd. look for the flashing lights - i'll have a studio set up and i'll be photographing the conference attendees (or anyone else who wants to sit for a photo). </p> <p>if you're in the neighborhood, please stop by and say hello. and have you picture taken! </p> <p>thanks. </p> <p>max. </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=7#post-12 Sat, 19 Apr 2008 23:35:54 +0000 maxsgerber 12@http://msgphoto.com/heartkidsproject/forum/ <p>in the mail today i received an invitation/notice of dylan's imminent graduation from high school next month. i can hardly believe it. dee dee included some pictures, too, and even though i've photographed dylan as recently as last summer, it still amazes me to see him now, and how different he is from the 11 year old in the book. he's got a guitar, and is a total rocker. when the last pictures for the book were taken dylan had just started thinking about taking guitar lessons. </p> <p>i'm really proud and i'm terribly grateful that i've been able to be around to see him grow up. </p> <p>dee dee also requested that we update the mirror picture in my chapter of the book. that's mario, dylan and myself in mario's bedroom. apparently the boys want to redo the picture now, to show that they now tower above me. yep, i'm short, and the only way i can appear taller is to photograph myself with 11 year olds. it's a sad fact. </p> <p>dylan should be visiting mario sometime next month, so hopefully we'll get a chance to redo that picture soon. </p> <p>anyway, it's such a remarkable side effect of a project like this. what a gift to be involved in these kids lives. thanks, guys. </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=2#post-11 Sat, 12 Apr 2008 16:39:20 +0000 maxsgerber 11@http://msgphoto.com/heartkidsproject/forum/ <p>Jim - </p> <p>Thanks for joining the message forum, and thanks for sharing your story. Open heart surgeries have come a long way in the past forty years, haven't they? It's still amazing to me that a simple pacemaker replacement is so routine now, when I used to spend 3-5 days in the hospital for it. </p> <p>You bring up an interesting point that I hadn't actually figured on before. I always sort of intended that the book be a means to help parents understand their kids, and to help kids understand/find comfort/familiarity in each other, but I never really thought about it helping the patients themselves understand what their parents were going through. That's really wonderful to hear, and I'm glad you found it so. </p> <p>Thanks,</p> <p>msg </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=2#post-10 Thu, 10 Apr 2008 07:37:38 +0000 JimW 10@http://msgphoto.com/heartkidsproject/forum/ <p>Max, I'm an adult survivor of CHD like you, although a good bit older. Born with Tetralogy of Fallot, I had my original repair at the Mayo Clinic in 1960, not long after the birth of open heart surgery. OHS, you may know, was developed to save the nearly 1% of all children born with CHDs from dying an early death. I served on the board of directors of the Adult Congenital Heart Association, a national nonprofit organization dedicated to improving the lives of adults with CHD, from 2003 through 2007. You probably know some of our members from the LA area through your work at Camp del Corazon.</p> <p>The reason why I'm writing you is that I bought your book last week and I must say that it moved me to tears a number of times. The photos of Scott in obvious pain while walking after his surgery brought memories streaming back of my recovery in 1960. I still recall the nurse making me walk, ever so slowly, and I kept telling her, "It hurts! It hurts!" Your photos and writings helped me understand the pain and fear that my parents must have faced in raising me... thank you for including the parents' perspective in your book.</p> <p>By the way, I'm an amateur photographer, although my work pales in comparison to yours. And the Mayo Clinic did an article on me in their magazine which is available online here in case you're interested: <a href="http://www.mayoclinic.org/mcitems/mc2400-mc2499/mc2448-s03.pdf" rel="nofollow">http://www.mayoclinic.org/mcitems/mc2400-mc2499/mc2448-s03.pdf</a> </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=4#post-9 Sun, 30 Mar 2008 15:55:03 +0000 Dylan 9@http://msgphoto.com/heartkidsproject/forum/ <p>Hey, guys this is Dylan from the book just here to let you know that I'm open for any questions you've got. Keep in touch.<br /> :P</p> <p>Dylan </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=2#post-8 Thu, 27 Mar 2008 16:08:14 +0000 maxsgerber 8@http://msgphoto.com/heartkidsproject/forum/ <p>Thanks, Megan! It's wonderful to see Ali growing up. If she likes, have Ali send me some of her pictures and we'll post them on the site. </p> <p>msg </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=2#post-7 Thu, 27 Mar 2008 07:56:13 +0000 MeganSandoval 7@http://msgphoto.com/heartkidsproject/forum/ <p>Max, I love the book. It is a work of deep compassion. It breaks my heart in so many ways...yet makes me smile in more ways. Thank you for finishing this project. We feel that you are part of our lives for a reason...look at how you have inspired Ali to become a photographer. Keep smiling!<br /> Fondly,<br /> Megan Sandoval </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=6#post-6 Wed, 19 Mar 2008 16:57:15 +0000 maxsgerber 6@http://msgphoto.com/heartkidsproject/forum/ <p>Welcome to the discussion forums for the book, My Heart vs. the Real World.</p> <p>This will be a place where kids and families can talk to each other, get information on CHD, and advice from the community at large. Though there are many forums on the internet geared towards parents, it's my desire that this also be a safe place for kids and teens to post with any of their questions and concerns. Other CHD kids will respond to your questions, and of course, you've always got me. I've been there. Mostly. </p> <p>To post to the forum you must first create an account with a username. To do this click on "Register" up at the top there, then supply the required information (Username and Email - and if you like, your URL, location, etc). Then click the button on the bottom right that says "Register" and soon you'll be emailed a temporary password. To change this password just log in to your account and click on the "Profile" button. </p> <p>When your account is active PLEASE take a moment to introduce yourself to the forum here, in this section. Tell us who you are and where you are and what brought you here. </p> <p>If you have any questions or experience any difficulty operating the forums please send an email to info [at] heartkidsproject [dot] org</p> <p>Thanks! </p> <p>Max. </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=5#post-5 Wed, 19 Mar 2008 16:29:58 +0000 maxsgerber 5@http://msgphoto.com/heartkidsproject/forum/ <p>Please use this section for any miscellaneous comments or questions you might have that don't necessarily fall into any of the other categories. If enough topics are raised on a certain point we'll consider making a separate category for those things and will move the discussion there. </p> <p>Thanks, </p> <p>Max. </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=4#post-4 Wed, 19 Mar 2008 16:27:48 +0000 maxsgerber 4@http://msgphoto.com/heartkidsproject/forum/ <p>This section is specifically for kids and teenagers with CHD (Congenital Heart Disease) to discuss issues that pertain to them. I'll be moderating this section, as will some of the kids from the book, and we'll try to keep parent involvement to a minimum - promise! </p> <p>Thanks, </p> <p>Max. </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=3#post-3 Wed, 19 Mar 2008 16:26:32 +0000 maxsgerber 3@http://msgphoto.com/heartkidsproject/forum/ <p>This section is where parents and families of those with CHD (Congenital Heart Disease) can post their questions and comments. </p> <p>Kids: feel free to chime in here, if you like, too! </p> <p>Thanks, </p> <p>Max. </p> http://msgphoto.com/heartkidsproject/forum/topic.php?id=2#post-2 Wed, 19 Mar 2008 16:23:06 +0000 maxsgerber 2@http://msgphoto.com/heartkidsproject/forum/ <p>This is the place to make any comments you might have about the book (My Heart vs. the Real World), or ask any questions. You can ask questions of me, or of any of the subjects in the book. If they're not participating directly in these forums I'll still do my best to get your question to them.</p> <p>Thanks,</p> <p>Max. </p>