Simon is doing really well and tomorrow is our big day--ESOPHOGRAM!  We are praying it's good. He's four days post-op and has been smiling and active most of the day.  He even pulled himself up to a standing position while holding my fingers. I know it won't be long before he's mobile.  It is so fun to watch him move about and play.  Since surgery, Sean and I have been trying to process the information we received.  It appears that Simon had two fistulas.  He probably had two all along and what ever happened on July 5th most likely aggravated the proximal (upper) one.  Dr. J won't comment on the previous 4 surgeries as he wasn't there and only has the operative reports to go by, but we had one of the other doctor's show us a diagram  and explain to us what they saw and did.  They visualized a repaired distal (lower) fistula that looked good and "appeared" to be an old repair.  They also saw a small pouch (a common occurrence in TEF pts) in the distal esophagus near the repaired fistula  which in all likelihood is what was believed to be a fistula by the surgeon in California.  They were only able to visualize the proximal fistula when they separated the esophagus and trachea, and then it was clearly visible. I have read about proximal fistulas and it does seem that they are often missed (unless you know what you are looking for). We are upset that Simon had 4 surgeries that resolved nothing and may have even contributed to his current issue with his trachea Simon still may need to have a stent place in his trachea to hold it open.  When he cries he oxygen level goes down and that may be indicating his trachea is partially collapsing. Dr. J may have a test done to see if that's the case.
We enjoyed a beautiful snowfall!  While it was wicked cold it was beautiful and fun all the same.  Eli and I walked to Trader Joe's (about 1 mile round-trip) during the snowstorm and that was fine...I just didn't realize I'd be carrying two HEAVY bags back while keeping track of a busy 4 year-old! 

We found out they have volunteers who can come and stay with Simon when we go to the aquarium.  I am SO happy about that!  Even though he is doing good I can't think about leaving him alone while he's awake. 

I hope you enjoy the pictures.

Does this look like a baby who had surgery four days ago?!?!

freezing out at the playground we thought was closed so we didn't dress properly

playing in the snow

This was right after Sean threw a snowball at Eli and it hit him in the back. He wasn't too happy about that!

Out of a room full of toys, this is what eli wanted to play with:)

The beautiful house we are staying in!