Monday, August 29, 2011

OT Appt

So today's OT appointment went good. They actually did a scope and saw that Raygen's right vocal cords are working "normal" which is so amazing and I'm so excited. Her left cords are not working so they are thinking nerve damage. They may start to work again in a year or so. The good news is that you don't need both working to loose the trach :0) So the plan is.... the doctor is going to share the results to the Cardio doc and they would like us to go back to Children's this week and try a speak valve and have Raygen monitored during the test to make sure she handles it okay. The speak valve will allow Raygen to breathe air in through her trake and out through her mouth and nose, this is the first step to getting rid of the trake. I think a lot depends on how she handles the speak valve on where we go from here but thank you God that her right cords are working. What a blessing it would be to loose the trake before her next heart surgery. To hear her cry or babble or laugh, I dream for those moments. So now we wait.....we wait to hear when they want to try the valve, when they want to do the heart cath, and when they want to do the glenn. I'm going to enjoy the waiting although I am really excited to see how Raygen does with the valve and I can't wait to see her face when she hears herself cry. Please pray that Raygen handles the speak valve okay and that we can get rid of the trake before the glenn and please pray that Zoie's first day of second grade "rocks".