Monday, February 7, 2011

Monday, February 7th, 2011

A note from Mommy:

This is a picture I wouldn't have expected a week ago.  Although we kept hearing the pain shouldn't be so bad with the jaw distraction, we approached this surgery with trepidation after her internal distraction several years ago was so painful.  It is still no fun to hold Peyton down and have her try to kick and hit us to get us to stop, but when she is able to stop crying and watch a video less than five minutes later as if nothing happened it has made this process so much easier.  The other day she pointed to the distractors and signed "Daddy hurt" which definately didn't make Travis feel very good since he is the one doing the pin turning while I am the unofficial strait jacket.  We also now have the added bonus that Michelle is able to do one of the pin turnings at night while Peyton is sleeping - I am still in awe of that statement.  Jaw distractions are necessary evils in the life of a child with Nager and one that will be repeated as she continues to grow.  We are so lucky that this time around the process is not so emotionally scarring as it was the last time.  I am currently a big fan of the external distractors.  When we made the choice for the internal distractors the first time it was partially a decision based on how awful the external hardware looks.  I can only imagine the stares we will get once we start taking Peyton back out in public with us - it really does appear as if we have some archaic torture device strapped to her face.  But I will be kissing those distractors once they come off if this is how it is going to be!


  1. Peyton you are a trooper and I cannot even imagine how painful that is.
    You are an amazing little girl.

  2. Hi Peyton,
    I am 16 (with Trisomy 18 mosaicism) and having the same surgery soon. I hope I am as brave as you are!! I don't live in the US, but have been to Primary Children's in Utah, they were great there