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Raising Special Needs Kids Raising Special Needs Kids

White matter disease

Posted by on Jan. 30, 2013 at 3:42 PM
  • 13 Replies
Well today at the genetics we found out that Conner has a possible white matter disease. He showed me the mri and compaired it to the last one which shows regression of more of his white matter so now there running test to see exactly what is causing it. He told me no more babies at this moment til this is all over with. Then he said to call if something changes drastically in the next two months like there waiting on it to. He said he will pray for me. He was so sad looking when he came back in the room to show me the mri. He told me that i need to just love him and make sure he is as comfortable and happy as possible. Im sick to my stomach. I thought he was doing so good cause he is trying to crawl now this. I feel like im being robbed and this is my baby how can this be.
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by on Jan. 30, 2013 at 3:42 PM
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Replies (1-10):
gma12.1
by on Jan. 30, 2013 at 3:53 PM

 I will pray for you & Conner.  I wish I knew what to say that would be of comfort.  *HUGS, HUGS, HUGS!*

My Second time around & loving it!
boy n girl     toddler girlLina

The Twins

mandee1503
by Amanda on Jan. 30, 2013 at 3:53 PM

*hugs* I'm so sorry.

jjamom
by Michele on Jan. 30, 2013 at 4:07 PM
Huge hugs! I'm so sorry, I am sure that is a lot to absorb. I hope the testing can provide some helpful answers. Many prayers for you and Conner!
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Elyssa414
by Elyssa on Jan. 30, 2013 at 4:13 PM
Wow. I'm so sorry. Try to hold onto hope that the doctors don't know everything! If he's doing well, then that's great! *GIANT HUGS*
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natesmom1228
by on Jan. 30, 2013 at 4:16 PM

I will pray for your family. Please keep us informed. We are here for you.

Mipsy
by Chelle on Jan. 30, 2013 at 5:32 PM
Oh momma I'm so very sorry *hugs*
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Elyssa414
by Elyssa on Jan. 30, 2013 at 6:47 PM
I can't stop thinking about you. I just can't imagine how hard this must be. You are in my heart today, Mama
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letstalk747
by Joy on Jan. 30, 2013 at 9:18 PM

 im speechless

 hugs

Melissa_4
by on Jan. 30, 2013 at 9:22 PM

Is it Alexander disease or Krabble?

I'm sorry you're going through this.

JOEJULA
by Member on Jan. 30, 2013 at 9:53 PM

Oh honey I am so so sorry. A new diagnosis like this Im sure is hard to hear. Praying for you and your family.

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