An update on Simon

This is primarily JUST an update on Simon. Simon has been having a lot of issues with food getting stuck due to a narrowing in his esophagus (most EA/TEF kids will have this due to their surgeries). He was on g-tube feedings from the age of 5-12 months and we have been g-tube free until this past Wednesday.  He had another Mic-Key g-tube placed (and also his fourth dilation of the esophagus).... and we are so thankful!  There was always this underlying concern regarding his nutritional intake and now I can say that a huge burden has been lifted!!!!  He stayed in the hospital 3 days and his first day was really a tough one.  He was in a lot of pain even with getting morphine,  and he also wasn't peeing.  As a mom, I felt so helpless watching and listening to him cry out in pain.  Oh how I wish I could have taken his place.  Praise the Lord that on day 2, things starting going better and we got our smiley happy guy back!  Still in pain, but manageable.  He had an upper GI test that revealed there was still a narrowing in his esophagus.  This is thought to be a ring of cartilage surrounding it.  It doesn't respond well to being dilated and from what I was told, surgery is the only option for him. The doctors are trying to get a small enough probe to stick down his esoph and ultrasound the narrowing to give them a more accurate picture.  We are praying they will discover it is ONLY scar tissue and NO surgery is needed.  We are also sending the films to Dr.Rusty Jennings in Boston for a second opinion. If you recall all that Simon went through in 2009...another esophageal surgery is NOT what we want for him! 

See that white spot...the dog ATE the carpet while Simon was in the hospital!!!!!  That's what happens when a puppy is left unattended...Dak!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Simon feeling SO MUCH better the day after surgery

The 2nd day after surgery he decided to go exploring...underneath his hospital crib!

Feeling better:)

down for a nap before his discharge

The feeding supplies dropped off this morning.  We don't have much storage space to begin with...where to put it all?!?!?

And of course, no post would be complete without this handsome dude!