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Dealing with some stuff...


Forum: October 2012 Playroom

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  • 2 Post By kaylarayne
  • 1 Post By AltMommy
  • 1 Post By jessjillmama
  • 1 Post By doremi

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  #1  
October 26th, 2012, 01:38 PM
jessjillmama's Avatar ***Staying Positive***
Join Date: Sep 2004
Location: Coushatta, La
Posts: 7,892
So I have posted before about this but I thought Beaux was healthy and free of Joubert Syndrome, a genetic brain disorder our first son died from but he is starting to show signs that he might actually have Joubert after all. I have been crying all week long and trying to deal with it all. We have to get a MRI to have officially diagnosed but I am pretty sure he has it. The developmental delays I can deal with it but if he gets sick or dies I am not sure I can handle it. I have been a mess to say the least.

I am glad that I am a therapist now though so I have already started early intervention with him and we are doing therapy everyday now.

I am not sure when he will get a MRI, I am waiting to call his doc for his insurance card to come in. I keep getting tons of bills for him in the mail because his insurance hasn't kicked in yet.

Thankfully he seems healthy right now but he is showing some breathing difficulties when he eats and when he is in pain.

I am just scared and hurt of course because I wanted a healthy boy so badly. So I guess we won't be having another baby now.

Thanks for letting me vent.
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Wife to Brian since October 2004, Mama too:
Jakob (May 12th 2004- Feb. 24th 2009 Had Joubert Syndrome RIP)
2 Baby beans lost
Ava Sept 14th 2007, Beaux Oct 3rd 2012
* Tubal reversal December 17th 2010



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  #2  
October 26th, 2012, 01:53 PM
kaylarayne's Avatar Mega Super Mommy
Join Date: Feb 2012
Location: Taylorsville, UT
Posts: 1,037
I have absolutely no words for you other than you and your precious little boy are in my thoughts and prayers. I am sending you lots of hugs and I am really hoping for the best. So sorry you have to deal with this
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  #3  
October 26th, 2012, 01:57 PM
AltMommy's Avatar Mega Super Mommy
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Location: Bay Area, California
Posts: 2,318
Praying for you and your little boy.

We are all here for you!
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  #4  
October 26th, 2012, 02:01 PM
LoverlyJules's Avatar Mega Super Mommy
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Posts: 3,577
I am so sorry! :sorry:
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  #5  
October 26th, 2012, 02:16 PM
Super Mommy
Join Date: Apr 2012
Posts: 829
I am so so sorry that you are dealing with this. I and my family will be keeping you all in our thoughts and will be hoping the MRI is clear. Do keep us posted when you can and know that we are here to vent to whenever you need.
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  #6  
October 26th, 2012, 02:17 PM
SarahxSyanide's Avatar Super Mommy
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Location: New Hampshire
Posts: 667
My heart aches for you and your family! I really hope everything turns out to be ok and he's as healthy as can be! I'll be thinking of you and hoping for you!

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~Genevieve Violet Born October 31st at 10:42pm 10lbs 1oz 22inches.~
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  #7  
October 26th, 2012, 02:22 PM
ShawnaCAN's Avatar Platinum Supermommy
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Location: Alberta, Canada
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Prayers!!!!
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  #8  
October 26th, 2012, 02:27 PM
jlstebbins's Avatar *Super*Mega*Mommy*
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Location: Missouri
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I will be thinking of you and your baby boy!! Our thoughts and prayers go out to you!
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  #9  
October 26th, 2012, 03:05 PM
KMH KMH is offline
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Sending prayers! I hope your little man is okay.
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  #10  
October 26th, 2012, 03:12 PM
**Jenn**'s Avatar Platinum Supermommy
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Location: NJ
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Lots and lots of prayers for you and your baby boy.
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  #11  
October 26th, 2012, 04:16 PM
Mega Super Mommy
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Fingers crossed and my thoughts are with you. I hope the doctor gets a move on so he can get his insurance card.

*hugs*
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  #12  
October 26th, 2012, 04:30 PM
jessjillmama's Avatar ***Staying Positive***
Join Date: Sep 2004
Location: Coushatta, La
Posts: 7,892
Thanks ladies. I am sure over all everything will be okay I just have fears for what could happen. Trying to not stress and worry over what I can't control. Thanks so much for the support and I will keep you all updated as things happen.
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Wife to Brian since October 2004, Mama too:
Jakob (May 12th 2004- Feb. 24th 2009 Had Joubert Syndrome RIP)
2 Baby beans lost
Ava Sept 14th 2007, Beaux Oct 3rd 2012
* Tubal reversal December 17th 2010



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  #13  
October 26th, 2012, 04:30 PM
LucilleTwo's Avatar Andrea, mama to L & E
Join Date: Oct 2008
Posts: 6,017
So sorry to hear this. Will be thinking about you and your little man.
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  #14  
October 26th, 2012, 04:43 PM
yashobo's Avatar Mega Super Mommy
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Location: Brisbane, Down under
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Oh no, hugs and prayers.
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  #15  
October 26th, 2012, 05:01 PM
CrunchyChristian
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I'm so sorry! I will be praying and if it's okay, I'd like to ask my prayer group to be praying for you as well.
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  #16  
October 26th, 2012, 05:52 PM
ellinj0206's Avatar Mom to Alexandra Jane
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Location: NJ
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Prayers are being sent your way. Have faith, things will be ok!
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  #17  
October 26th, 2012, 06:50 PM
doremi's Avatar Team Blue Mama of Two
Join Date: Dec 2007
Location: USA
Posts: 17,492
I'm so sorry to hear this, my heart just aches for you! Praying that the MRI can be done soon, and the results would be good. We are here for you, no matter what happens.
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  #18  
October 27th, 2012, 08:43 AM
jessjillmama's Avatar ***Staying Positive***
Join Date: Sep 2004
Location: Coushatta, La
Posts: 7,892
Thanks again, I talked to dh and he agrees forget the insurance card I need to call Monday. I think he needs a swallow study done to see if he is aspirating with eating. I am sure he isn't but when he eats it sounds bad and he is coughing so I need to make sure to be safe. Thank you for the prayers I am feeling better today about things.
Ember Rose likes this.
__________________
Wife to Brian since October 2004, Mama too:
Jakob (May 12th 2004- Feb. 24th 2009 Had Joubert Syndrome RIP)
2 Baby beans lost
Ava Sept 14th 2007, Beaux Oct 3rd 2012
* Tubal reversal December 17th 2010



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  #19  
October 27th, 2012, 03:00 PM
doremi's Avatar Team Blue Mama of Two
Join Date: Dec 2007
Location: USA
Posts: 17,492
I'm so glad you are feeling better today! And yes, I agree with your DH. Get him in as quickly as possible- you need some answers.
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  #20  
October 28th, 2012, 07:37 AM
Kansascity kitty's Avatar Platinum Supermommy
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Location: NOVA
Posts: 7,997
Big virtual hugs and many prayers being sent your way. My fx are crossed he will not have the disease. Hang in there.
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