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Please keep me in your thoughts. OT UPDATE

Posted by on Apr. 27, 2012 at 5:16 PM
  • 28 Replies
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My 9 week old was born with birthmarks covering half of her face, and several different areas of her body.  Her pediatrician wanted us to see a geneticist about it.  We went today, and they think she has something called it may be something called CM-AVM Syndrome.   It can cause seizures, mental retardation, abnormal bleeding, heart failure and can be life threatening .  They tested her for the RASA1 gene to hopefully rule this out.  The results will take 6-12 weeks to come back.  Please keep us in your thoughts.  I am a nervous wreck.  :(

Here is my sweet, sweet baby

Update:

I feel like a huge weight has been lifted off of me because at Kimber's specialist appointment today, he didn't seem to think that any of the capillary malformations were attached to her brain, but referred us to a pediatric ophthalmologist to check to make sure they aren't going to harm her vision. He also suggested we have laser therapy done on her face, to minimize the appearance of them. He said that some children have to have as many as 30 treatments by the time they are 6. Please continue to keep us in your thoughts.  We still don't have the results from the genetic testing, but this is a step in the right direction :)

by on Apr. 27, 2012 at 5:16 PM
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Replies (1-10):
Baby_Avas_Momma
by Gold Member on Apr. 27, 2012 at 5:19 PM
She's beautiful!!!! Keeping you in my thoughts mama ((hugs))
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eckielady
by on Apr. 27, 2012 at 5:19 PM

She's absolutely gorgeous and I'm so sorry that you have to wait so long for the results. Ugh!! I will keep your family in my thoughts. 

Kaitlin123
by on Apr. 27, 2012 at 5:20 PM
Awe! I will keep you and your family in my thoughts! Sorry youR going through this!
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justone_jen
by Jen on Apr. 27, 2012 at 5:23 PM
Sweet sweet baby is right! She's absolutely gorgeous, mama. *hugs* I'm sorry you're dealing with this. You and your family are in my thoughts!
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maggiemom2000
by Ruby Member on Apr. 27, 2012 at 5:23 PM

OMG she is so cute!

I hope that it is just a birthmark.

I was born with red birth marks covering the right side of my face and neck, my chin and my right arm. I hope it helps to know that I a "normal" :-)

You can see some of it here:

Elyssa414
by on Apr. 27, 2012 at 5:36 PM
You are in my thoughts, mama. I have a 10-year-old with a life-threatening condition who is severely developmentally disabled. It was devastating to find out, but he is the light of my life! :-) I hope your daughter is okay. *hugs*

Feel free to join the raising special needs kids group on here too and ask questions!
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maggiandmike
by Bronze Member on Apr. 27, 2012 at 5:38 PM
1 mom liked this

 She looks perfect to me!

Keeely07
by Bronze Member on Apr. 27, 2012 at 5:40 PM
Awwww! She's adorable! I hope and pray everything turns out well for your little one.
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Tatumsmommy0123
by on Apr. 27, 2012 at 5:47 PM

I hope it's just a mark too!  Thank you for sharing this, it eases my mind a little bit to "know" someone else that has the same markings that she does, and is perfectly fine!

Quoting maggiemom2000:

OMG she is so cute!

I hope that it is just a birthmark.

I was born with red birth marks covering the right side of my face and neck, my chin and my right arm. I hope it helps to know that I a "normal" :-)

You can see some of it here:


elijahXmom
by on Apr. 27, 2012 at 6:06 PM

what a wonderful looking baby. good thoughts headed your way may it all work out.

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