@spano41

Re: @spano41

• spano41 member

  November 2014

  Thanks so much for asking! Emma has recovered quite well from her surgery. Her scar is barely noticeable but she has developed quite a lip pull where her lip is pulled up toward her nose. We are doing scar massage to help it come down and the doctors think it will look much better once the scar relaxes.
  
  Emma continues to have other health problems other than her cleft and we are trying to figure out if she has a syndrome. Last week the doctors told us they think she has kabuki syndrome which is a pretty bad diagnosis because it affects many different organs and systems. If She has KS she will have mild to severe intellectual disability and life long health problems so it has been really hard to deal with. We won't know for sure if she has it until we can get a genetic test done and the geneticist is booked through January so the waiting has been torture.
  
  Sorry to be so negative.... we still live our DD and she will always be my amazing daughter, it's just not the kind of diagnosis anyone wants for their child.

  

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• spano41 member

  November 2014

  Here is a recent pic!

  20141022_101616.jpg 2.3M

  

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• janellemj928 member

  November 2014

  Emma is beautiful, @spano41‌. Saying prayers for patience and healing while you wait to see the geneticist.

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• Dixon813 member

  November 2014

  Emma is adorable! Prayers during all of this waiting and that a diagnosis will allow you to move forward with the best treatment.

  ~ Leah, Rachel and Gabriel were born on May 27, 2013 (23 weeks) ~

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• Bluebird2318 member

  November 2014

  She is just lovely! I will be thinking of you both and keeping my fingers crossed for happy results to the genetic testing. I'm sorry that you have to wait so long for answers, but you are raising a wonderful girl either way!

  March 2017 September Siggy Challenge: Favorite Fall Things
  
  
  
  

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