ONLY THE BEST

Well, it's that time we knew would come after Priya was born...time for more surgeries.  It makes my heart sick to think what is ahead for her this year, but we knew it was coming.  I am sure there will be more good than bad, though, so I won't dwell unnecessarily or worry about it more than I have to.  And, if Priya has shown us anything, it is that she is one strong and resilient little girl!  Her craniofacial surgeon here wants to start discussing a date for closure of her cleft palate.  We still are not sure if it will be one surgery or two.  Our next appointment with him is February 4th.  His concern right now is whether or not closing her palate will lead to airway obstruction due to her large tongue. So, we meet again with her ENT on January 22nd.  He will do another laryngescope to see if anything has changed since her last one.  If not, I am sure he will recommend a tongue reduction, as he has in the past.  We want a second opinion before doing any drastic procedures, so we are taking Priya to the best of the best regarding tongue reductions and Beckwith Wiedemann Syndrome, Dr. Marsh at Mercy Children's Hospital in St. Louis.  MOST likely, if it is decided that Priya does need a tongue reduction before palate closure, we will do it in St Louis.

In the meantime, we continue to monitor her oxygen saturation from time to time, and she has been breathing great!  Her solid food eating is improving all the time, and she is starting to be able to tolerate more than purees without gagging or sneezing food through her nose too much.  She impress her mommy and daddy all the time with her determination and perseverance.