A Very Sad Update from Mistymama - Mothering Forums

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Old 12-14-2010, 04:26 PM - Thread Starter
 
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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.

 

Update 12/17 (c&p from FB): 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...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.  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.


Rachel, proud Army wife to my superhero.gif and SAHM to my crazy boys jumpers.gif... Trevor 4/08, Trenton 6/09 and Travis 10/10
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Old 12-14-2010, 05:52 PM
 
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Oh my. I am so, so sorry. Words can't describe. My thoughts and prayers are with you and your family, mistymama. 


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Old 12-14-2010, 06:05 PM
 
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Oh mistymama :(  I'm so sorry.  I think about you and Gavin often.  We are praying for you.  grouphug.gif

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Old 12-14-2010, 06:31 PM
 
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Old 12-14-2010, 08:09 PM
 
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I am so sorry to hear this.  You and your family are in my thoughts.  I still think about you and baby Gavin often.


Waiting, not so patiently, to meet our new addition this October
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Old 12-15-2010, 02:11 AM
 
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oh, mistymama. I'm so very sorry to hear this sad news about Gavin. My heart goes out to you and your family

x


Mama to DD Feb '08 (9lbs), DS Oct '10 (10lbs) hbac.gif, DD Jan '13 hbac.gif

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Old 12-15-2010, 07:42 AM
 
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I am so sorry. Mistymama, you, Gavin, and your family are in my prayers.


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Old 12-15-2010, 07:43 AM
 
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Old 12-15-2010, 07:54 AM
 
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I'm so sorry. greensad.gif


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Old 12-15-2010, 08:15 AM
 
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Words cannot describe, is right.  So, so very sorry to hear this mistymama.  I cannot even imagine.  Your family is in my thoughts.

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Old 12-15-2010, 10:42 AM
 
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Thinking of you all, mistymama, and sending you and baby Gavin peace and love.  xo


Part hippie-chick, part type-A career woman, all mama. Enjoying life as a wife to my partner of 11 years, and a mama to our smarty-pants toddler, Cadence.

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Old 12-15-2010, 10:58 AM
 
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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. 

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Old 12-15-2010, 10:54 PM
 
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I'm so sorry! greensad.gif My heart goes out to you and your family. You'll be in my thoughts.

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Old 12-16-2010, 10:55 AM
 
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Sending peace and love to mistymama and her family.


Molly - Hard working mama to DD 06/06 , #2 9/2010!
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Old 12-16-2010, 12:21 PM
 
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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. 


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Old 12-16-2010, 12:41 PM
 
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so, very, very sorry mistymama.


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Old 12-17-2010, 09:11 AM - Thread Starter
 
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Update in OP!


Rachel, proud Army wife to my superhero.gif and SAHM to my crazy boys jumpers.gif... Trevor 4/08, Trenton 6/09 and Travis 10/10
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Old 12-17-2010, 10:43 AM
 
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I'm so glad to hear that they're making some progress on figuring out what's wrong.  We will keep praying grouphug.gif

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Old 12-17-2010, 11:39 AM
 
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DDCC

 

so very sorry to hear about gavin :(

you're all in my prayers. 


mama to 9 year old h  and 3 year old z

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Old 12-18-2010, 12:55 PM
 
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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.

 

I'm thinking of you, Mistymama. 


B, happily married to M. Mother to two boys: B (3/08) and A (9/10)
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Old 12-19-2010, 05:49 PM
 
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I'm so sorry ... my thoughts are with Mistymama and poor baby Gavin.  I hope he's able to come home.


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Old 12-20-2010, 09:36 AM
 
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oh my, i'm praying so hard for a christmas miracle for them and clutching my baby just that little bit closer. always thankful.

 

love to you misty and strength n comfort to baby x


heartbeat.gifmy DH DS (5) angel1.gifx2... rainbow1284.gif DD 8th oct!! 9lb 5oz  Madison Akina-Mae - i wear her, feed her, co-sleep and hold her just about every minute of the day DS is my little scientist and the most loving person i ever did meet.  I'm lucky and I know it
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Old 12-20-2010, 09:41 AM - Thread Starter
 
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Gavin passed away yesterday, please keep Candace and her family in your prayers. We also need to decide what we would like to do with the money we have collected for her... Do we maybe want to get her a plant or bamboo or something? I have no idea...

Rachel, proud Army wife to my superhero.gif and SAHM to my crazy boys jumpers.gif... Trevor 4/08, Trenton 6/09 and Travis 10/10
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Old 12-20-2010, 09:50 AM
 
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candle.gifmecry.gif oh no. i cant say anything. too many tears. poor mama poor sweet boy


heartbeat.gifmy DH DS (5) angel1.gifx2... rainbow1284.gif DD 8th oct!! 9lb 5oz  Madison Akina-Mae - i wear her, feed her, co-sleep and hold her just about every minute of the day DS is my little scientist and the most loving person i ever did meet.  I'm lucky and I know it
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Old 12-20-2010, 12:02 PM
 
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tears here too. how heartbreaking. 

 

thinking of you Candace and family and your sweet baby Gavin. May he rest gently in peace

 

xxxx


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Old 12-20-2010, 12:07 PM
 
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I'm so, so very sorry to hear this.


Texmati-- Knitter, Hindu, vegetarian, WOHM. Wife to superdadsuperhero.gif and mom to DS babyf.gif24 months, and DD boc.gif 8 months! .

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Old 12-20-2010, 12:54 PM
 
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Oh no :(  I'm so sorry.  I was tentatively hopeful when I read the earlier update.  I have no words.  

 

 

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Old 12-20-2010, 03:01 PM
 
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My heart goes out to Candace and her family. 


Molly - Hard working mama to DD 06/06 , #2 9/2010!
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Old 12-20-2010, 06:53 PM
 
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 So much tragedy lately... rest in sweet peace, baby Gavin. And strength and comfort be to those who knew and loved him.

candle.gif


treehugger.gif SAHM with a precious toddler and the love of my life, expecting a new little one July 2014!
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Old 12-20-2010, 08:09 PM
 
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Such devastating news. I'm so sorry, mistymama. You and your family are in my thoughts and prayers. Rest well, dear sweet Gavin. candle.gif


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