Surgery is on for Friday, June 8

Ben's surgery is still on for Friday, June 8. Ben's urologist isn't able to do the deflux injections, but Dr. Minevich is (another Urologist in the group). Because there will now be three surgeons in the OR, the time was pushed back to 2:00 p.m. to allow more OR time. In addition to the injections, Ben will also get his ears cleaned out (they are always infected) and an airway scope. I am curious to hear if his airway has made any improvements since the drool procedure. If all goes as planned, Ben should be home early evening.

Ben is officially becoming a little boy with a temper. I don't know if the terrible two's are kicking in early or what, but he seems to have an opinion about everything these days. He wants to do his own thing all the time and does not like anyone making him do ANYTHING (this is very difficult considering we have to work with him so much for listening, ot, pt, speech, etc.). When he gets mad, he pumps his fists up and down super fast in unison... we call them his fists of furry. I think he is just starting to get frustrated because he has so much energy, wants to do more and is limited to rolling because that is all he knows how to do. He doesn't want his trach to be suctioned (hits away my hand), doesn't like diaper changes because he has to sit still (fists of furry start pumping) and we are having to be VERY creative in coming up with new ways to keep him attached to his feeding pole (he eats 9 times a day and each feed takes 48 minutes). I only wish there was something more I could do to entertain him! Life would be SO much easier if he didn't have this trach. I could just easily pop him in the car and drive him somewhere... by myself. I think that is the first thing I am going to do when his trach comes out one day - take him somewhere all by myself without having to worry about someone sitting in the back with him because he needs suctioned so much (even with the drool procedure, we still suction frequently).

I managed to get a picture of Ben in the act of pulling on his trach nose. From this picture, it is pretty obvious that Ben knows exactly what he is doing AND from the expression on his face, you can tell he knows he isn't suppose to be doing this either! What a little trouble maker!! I do have to say that as much as I hate this, I love it too because it shows me his brain is developing.