Circumstances

I’m sitting in the waiting area while Stanton is in speech therapy today.  As I watch the variety of folks come and go, I realize that I have so much to be thankful for.  Although I have a chronically sick little man, with a future that is cloudy and unknown, he is so precious.  I do see God’s perfect love reflected on his face. He is silly and witty.  He talks up a storm about everything, especially warning signs.  He loves robots, rocket ships, airplanes, letters and dump trucks.  He is so acutely aware of the world around him and takes absolute joy in investigating his surroundings.  

I spend most of my time investigating options for his treatment plan.  Over the past six months and in the hospital, Stanton has lost lots of weight…so much that he is now in need of a feeding tube.  We are playing the waiting game to see the various specialists it takes to move forward with this surgery.  I called our team at Cincinnati Children’s Hospital and Stanton’s case will be presented to the Aero-digestive Team on Wednesday.  The nurse should call after the team comes up with a plan of action for us.  This does mean we will soon be back in Cincinnati for tests, procedures, meetings and possible surgeries.  I am hopeful that we will connect with a “local” team that will be willing to partner with Cincinnati – but so far that just hasn’t happened.  

On Thursday we will see a pulmonologist at Tulane.  I’m really curious about this appointment and what will come of it.  I will post our new plan of action after our Tulane appointment and once I hear back from Cincinnati.  Until then – our family really appreciate your prayers, thoughts, and positive vibes for Stanton!

“Circumstances may cause interruptions and delays, but never lose sight of your goal. Prepare yourself in every way you can by increasing your knowledge and adding to your experience, so that you can make the most of opportunity when it occurs.”  Mario Andretti