Comments on: Broken Hearts http://www.theguiltyparent.com/2008/10/broken-hearts/ Tue, 31 Jan 2012 00:22:47 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: The Guilty Parent » Blog Archive » 2008: The Parenting Year in Review http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-312 The Guilty Parent » Blog Archive » 2008: The Parenting Year in Review Sun, 04 Jan 2009 03:36:26 +0000 http://www.theguiltyparent.com/?p=85#comment-312 [...] a family, we rallied around Zoe when she needed us and we’ve come out shining. The future is bright for her. As a mom, [...] [...] a family, we rallied around Zoe when she needed us and we’ve come out shining. The future is bright for her. As a mom, [...]

]]> By: From Cribs To Car Keys » Your Thoughts and Prayers Are Needed http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-185 From Cribs To Car Keys » Your Thoughts and Prayers Are Needed Mon, 03 Nov 2008 05:28:27 +0000 http://www.theguiltyparent.com/?p=85#comment-185 [...] has posted a lengthier description of Zoe’s problems at The Guilty Parent and they have set up the Zoe’s Heart website for Zoe’s mom to be able to share updates [...] [...] has posted a lengthier description of Zoe’s problems at The Guilty Parent and they have set up the Zoe’s Heart website for Zoe’s mom to be able to share updates [...]

]]> By: michelle http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-163 michelle Mon, 20 Oct 2008 01:06:00 +0000 http://www.theguiltyparent.com/?p=85#comment-163 I came accross you site through a search. My heart goes out to you and your family. Our daughter was born with cardiomyopathy and at 4mo she received her Gift of Lift (heart transplant). Please feel free to visit our site to see life after transplant.......normal, beautiful. It's a dfficult road, believe and pray God WILL see Zoey through. You and your sister may e-mail me any questions mschnepper2003@yahoo.com Our prayers are with you Michelle I came accross you site through a search. My heart goes out to you and your family. Our daughter was born with cardiomyopathy and at 4mo she received her Gift of Lift (heart transplant). Please feel free to visit our site to see life after transplant…….normal, beautiful. It’s a dfficult road, believe and pray God WILL see Zoey through. You and your sister may e-mail me any questions mschnepper2003@yahoo.com

Our prayers are with you
Michelle

]]> By: candise http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-159 candise Sat, 18 Oct 2008 13:36:35 +0000 http://www.theguiltyparent.com/?p=85#comment-159 Hi. You don't know me but I have to reassure you that Zoe is in excellent hands. One of the worlds leading Cardiologist who specializes in metabolic disorders is at the Cleveland Clinic. His name is Dr.Strauss. My daughter was born with a metabolic disorder called LCHAD(which sounds like what your niece may have). When a child with LCHAD gets sick with a common virus their heart(along with their liver) came become fatty which causes cardiomyapathy. The Drs can do a couple different tests to find out if this is what is wrong with her. One is an acylcarntine profile. They may also do a metabolic panel. They can also do a muscle biopsy which can tell if she has a metabolic disorder. Usually without diagnosis children with LCHAD die around 5 months old but there are some who survive longer until it is found out. What happens is the child's body doesn't break down fat for energy which is called a Fatty Acid Oxidation Disorder. There are different forms of it depending on which chains of fat their body doesn't break down. Does she have fatigue or sometimes seem lethargic? Does she have a really hard time bouncing back from simple illnesses? Have they tried giving her carnitine to help with her heart? There are some kids who have FAODs who are giving Carntine and it revereses the cardiomyapathy. My email address is Candise_ott@yahoo.com. Feel free to email or pass my email along to your sister if you have questions. HTH, Candise Hi. You don’t know me but I have to reassure you that Zoe is in excellent hands. One of the worlds leading Cardiologist who specializes in metabolic disorders is at the Cleveland Clinic. His name is Dr.Strauss. My daughter was born with a metabolic disorder called LCHAD(which sounds like what your niece may have). When a child with LCHAD gets sick with a common virus their heart(along with their liver) came become fatty which causes cardiomyapathy. The Drs can do a couple different tests to find out if this is what is wrong with her. One is an acylcarntine profile. They may also do a metabolic panel. They can also do a muscle biopsy which can tell if she has a metabolic disorder. Usually without diagnosis children with LCHAD die around 5 months old but there are some who survive longer until it is found out. What happens is the child’s body doesn’t break down fat for energy which is called a Fatty Acid Oxidation Disorder. There are different forms of it depending on which chains of fat their body doesn’t break down. Does she have fatigue or sometimes seem lethargic? Does she have a really hard time bouncing back from simple illnesses? Have they tried giving her carnitine to help with her heart? There are some kids who have FAODs who are giving Carntine and it revereses the cardiomyapathy. My email address is Candise_ott@yahoo.com. Feel free to email or pass my email along to your sister if you have questions.
HTH,
Candise

]]> By: Susan Heim http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-158 Susan Heim Sat, 18 Oct 2008 02:27:23 +0000 http://www.theguiltyparent.com/?p=85#comment-158 I was in tears reading this. I can only imagine how you must be feeling. My prayers and thoughts go out to all of your family. Life is so unfair sometimes. Sounds like Zoe already has a heart of gold, but here's hoping that there's just one more out there just for her. I was in tears reading this. I can only imagine how you must be feeling. My prayers and thoughts go out to all of your family. Life is so unfair sometimes. Sounds like Zoe already has a heart of gold, but here’s hoping that there’s just one more out there just for her.

]]> By: Dawn Woodings http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-157 Dawn Woodings Sat, 18 Oct 2008 00:28:46 +0000 http://www.theguiltyparent.com/?p=85#comment-157 I would just like to say that I finally got around to sitting down & reading your new blog. You've done a really good job with this one. (You & your sister do have the gift of writing). I know that this was a hard thing to write about - I'm glad you did it! As everyone else that visits here, knows Zoe, the family &/or friends - we also keep her in our thoughts & prayers everyday. Joe just mentioned the other day if they could see if his heart would be a match - he would gladly give it up tomorrow! I think we all would if we could - he just said it first. I had to explain that that is one organ you can't give up (it's not a kidney or lung)....so we'll take one day at a time & pray that our prayers will be answered well before Christmas. That too is a hard thing to think about - what will be a good thing for Zoe is going to be a hard thing for some other parent....what a hard decision that would be...could you do it - give up something from one of your children that just passed on knowing they have to cut them open to get it...I'm afraid I would have been very selfish if that would have been me when all of you were small - but now - those people ....well, there hero's in my eyes .... Love mom & Zoe grandma I would just like to say that I finally got around to sitting down & reading your new blog. You’ve done a really good job with this one. (You & your sister do have the gift of writing). I know that this was a hard thing to write about – I’m glad you did it! As everyone else that visits here, knows Zoe, the family &/or friends – we also keep her in our thoughts & prayers everyday. Joe just mentioned the other day if they could see if his heart would be a match – he would gladly give it up tomorrow! I think we all would if we could – he just said it first. I had to explain that that is one organ you can’t give up (it’s not a kidney or lung)….so we’ll take one day at a time & pray that our prayers will be answered well before Christmas. That too is a hard thing to think about – what will be a good thing for Zoe is going to be a hard thing for some other parent….what a hard decision that would be…could you do it – give up something from one of your children that just passed on knowing they have to cut them open to get it…I’m afraid I would have been very selfish if that would have been me when all of you were small – but now – those people ….well, there hero’s in my eyes ….
Love mom & Zoe grandma

]]> By: Mark Snider http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-156 Mark Snider Fri, 17 Oct 2008 16:06:35 +0000 http://www.theguiltyparent.com/?p=85#comment-156 This is for my grand daughter Zoe. I have been there for her and will continue to be but what most don't know is that I have been through this before and seen the miracle of Rainbow Babies and Children's Hospital a long long time ago. Almost 34 years ago I had a little girl born with Transversion of The Great Arteries. She was sent to Rainbow the day after she was born for a procedure to buy os time. She is the one doing the interview with Zoe. She had open heart surgery when she was 6 months old. She is the person running this blog today. I believe in miracles and if it isn't to much to ask I am praying for a second one in my life time and will please ask anyone who reads this to do the same. Zoe is a gem and those who know her may say a little bit of the Devil also, but to us she is an angel. She is her mother out and out. The child we all wish for our children to have when we say" I hope she goes up to be just like you". We are now just wishing for her to grow up. So please say a prayer for her and pray for another miracle. This is for my grand daughter Zoe. I have been there for her and will continue to be but what most don’t know is that I have been through this before and seen the miracle of Rainbow Babies and Children’s Hospital a long long time ago. Almost 34 years ago I had a little girl born with Transversion of The Great Arteries. She was sent to Rainbow the day after she was born for a procedure to buy os time. She is the one doing the interview with Zoe. She had open heart surgery when she was 6 months old. She is the person running this blog today. I believe in miracles and if it isn’t to much to ask I am praying for a second one in my life time and will please ask anyone who reads this to do the same.
Zoe is a gem and those who know her may say a little bit of the Devil also, but to us she is an angel. She is her mother out and out. The child we all wish for our children to have when we say” I hope she goes up to be just like you”. We are now just wishing for her to grow up. So please say a prayer for her and pray for another miracle.

]]> By: Andrea http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-154 Andrea Thu, 16 Oct 2008 18:43:30 +0000 http://www.theguiltyparent.com/?p=85#comment-154 Zoe is in good hands. The CC is a great hospital. My thoughts and prayers are with you and your family. I can't wait to come back and see you writing about the good news! Zoe is in good hands. The CC is a great hospital. My thoughts and prayers are with you and your family. I can’t wait to come back and see you writing about the good news!

]]> By: Rebecca Buscemi http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-153 Rebecca Buscemi Thu, 16 Oct 2008 16:53:27 +0000 http://www.theguiltyparent.com/?p=85#comment-153 I'm so sorry to hear about your niece:( I won't be around on Saturday for the video but I'm going to stay updated through your blog for other ways to help. In my prayers! I’m so sorry to hear about your niece:( I won’t be around on Saturday for the video but I’m going to stay updated through your blog for other ways to help. In my prayers!

]]> By: Andrea @ Mommy Snacks http://www.theguiltyparent.com/2008/10/broken-hearts/comment-page-1/#comment-152 Andrea @ Mommy Snacks Thu, 16 Oct 2008 16:42:12 +0000 http://www.theguiltyparent.com/?p=85#comment-152 I will be praying for Zoe, and of her family to have peace and reassurance!!!!!! I will be praying for Zoe, and of her family to have peace and reassurance!!!!!!

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