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Discussion Starter · #1 ·
<p>I have a very sad update from MistyMama about baby Gavin: Gavin is not doing well. We decided we do not want him to suffer simply to extend his life & put a 'do not resuscitate' in place along with measures to make him more comfortable. If things improve, we choose to bring him home, with hospice. There are no words to describe this nightmare & the agony of watching Gavin suffer. Please keep her and her family in your thoughts and prayers, this a position no family should ever have to be in.</p>
<p> </p>
<p>Update 12/17 (c&p from FB): <span>They have identified where he is loosing protein and can give a certain steriod to help stop it - that also means we can stop the nasty ACTH injections. Our goal is keeping Gavin comfortable and give him the best quality of life possible, w<span class="text_exposed_hide">...</span><span class="text_exposed_show">hile not extending his life with heroic measures. He has comfort meds (for pain & rest) avaliable and we will continue work on his seizures - he's starting a ketogenic diet Monday. But most of all, we will be able to care for him AT HOME where he belongs, with very supportive nursing care. Hopefully he can come home in time for Christmas. </span></span> <span>Also forgot to mention some genetic tests came back - Gavin's lissencephaly is genetically based, some deleted chromosome. We'll meet with Dr's next week for more detail and hopefully be able to put a name/syndrome to this.</span></p>
 

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<p>Oh my. I am so, so sorry. Words can't describe. My thoughts and prayers are with you and your family, mistymama. </p>
 

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<p>Oh mistymama :(  I'm so sorry.  I think about you and Gavin often.  We are praying for you.  <span><img alt="grouphug.gif" src="http://files.mothering.com/images/smilies/grouphug.gif"></span></p>
 

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<img alt="hug.gif" class="bbcode_smiley" src="http://files.mothering.com/images/smilies/hug.gif">
 

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<p>I am so sorry to hear this.  You and your family are in my thoughts.  I still think about you and baby Gavin often.</p>
 

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<p>oh, mistymama. I'm so very sorry to hear this sad news about Gavin. My heart goes out to you and your family</p>
<p>x</p>
 

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<p>I am so sorry. Mistymama, you, Gavin, and your family are in my prayers.</p>
 

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<p><span><img alt="mecry.gif" src="http://files.mothering.com/images/smilies/mecry.gif"></span></p>
 

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<p>I'm so sorry. <span><img alt="greensad.gif" src="http://files.mothering.com/images/smilies/greensad.gif"></span></p>
 

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<p>Words cannot describe, is right.  So, so very sorry to hear this mistymama.  I cannot even imagine.  Your family is in my thoughts.</p>
 

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<p>Thinking of you all, mistymama, and sending you and baby Gavin peace and love.  xo</p>
 

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<p>how terribly heartbreaking. i'm so sorry this is happening. i shared your story of sweet gavin w/ my husband many weeks ago and we think of him, and your family, often. </p>
 

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I'm so sorry! <img alt="greensad.gif" class="bbcode_smiley" src="http://files.mothering.com/images/smilies/greensad.gif"> My heart goes out to you and your family. You'll be in my thoughts.
 

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<p>Sending peace and love to mistymama and her family.</p>
 

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<p>I'm so sorry to hear about sweet little Gavin.  I wish peace for Gavin and strength for you and your family to get through this awful time. </p>
 

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<p>so, very, very sorry mistymama.</p>
 

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Discussion Starter · #17 ·
<p>Update in OP!</p>
 

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<p>I'm so glad to hear that they're making some progress on figuring out what's wrong.  We will keep praying <span><img alt="grouphug.gif" src="http://files.mothering.com/images/smilies/grouphug.gif"></span></p>
 

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<p>DDCC</p>
<p> </p>
<p>so very sorry to hear about gavin :(</p>
<p>you're all in my prayers. </p>
 

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<p>My heart breaks for Mistymama and her entire family.  I have been thinking about her a lot the past few days and just haven't known what to say.</p>
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<p>I'm thinking of you, Mistymama. </p>
 
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