Community› The Bump Month Clubs› April 2014 Moms
April 2014 Moms
New Discussion

@spano41

Bluebird2318Bluebird2318 member
in April 2014 Moms
@spano41 I haven't been around here as frequently as I used to be, so forgive me if I missed an update, but I was wondering how Emma was doing. I know she had her cleft repair surgery a couple months back. How is the healing coming along? I hope you are both well.
March 2017 September Siggy Challenge: Favorite Fall Things

Baby Birthday Ticker Ticker
Baby Birthday Ticker Ticker
Pregnancy Ticker
Report Reply to Post

Re: @spano41

  • spano41spano41 member
    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.
    BabyFruit Ticker
    Report Reply
  • Loading the player...
  • janellemj928janellemj928 member
    Emma is beautiful, @spano41‌. Saying prayers for patience and healing while you wait to see the geneticist.
    Report Reply
  • Dixon813Dixon813 member
    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) ~ Lilypie Angel and Memorial tickers Lilypie First Birthday tickers
    Report Reply
  • Bluebird2318Bluebird2318 member
    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

    Baby Birthday Ticker Ticker
    Baby Birthday Ticker Ticker
    Pregnancy Ticker
    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"