Drumroll please......

See that tube?  It's days are numbered!
For the first time since May 27th, Tiernan has gained weight.
Considerable weight.
For the past several months he has held firm at 24 lbs 1.5 oz.
But today?
Today, he is 25 lbs 5.1 oz!
And that is since his last weight at GI on June 27th. 
Oh, and may I remind you all that he has been tube free since July 21st?
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am beyond thrilled with this news! 
He had a gain of OVER A POUND eating
all. by. him. self!
But wait!  That's not all!
In a matter of days, yes, days, we will more than likely be, as Dr. Stefanelli (cardio) says, "popping that button out of his belly"! 
In case you missed that, I'll say it again.
Within days, we will be taking the tube out for good. 
I kind of hope they say to take it out on Friday. 
Friday is his 2nd birthday.  That would be an awesome way to celebrate him turning 2.

The ONLY somewhat frustrating part of this whole visit was due to a lack of communication and consensus on the part of the dietitians.  Several months ago, you may recall if you are a faithful reader here, Judy (whom we don't usually see) recommended we use the tv and distractions to get him to eat.  I, somewhat reluctantly and guilt ridden, complied, figuring we would trade that bad habit for lots of calories and deal with the habit later.
Apparently now is later.
Today, Jessica, Tiernan's main dietitian, said absolutely not.  We should not be doing that.  So I am trying to put aside my considerable irritation with them for not presenting the same information to patients they share and begin the retraining process.  So now we need to eliminate any grazing and only feed him or allow milk every 2 to 3 hours.  We need to establish clear "cues" that show him it is time to eat, and turn it into play time. 
[sigh]
Got it. 
The only reason I am okay with this is that Jessica is fully aware and accepts the fact that he won't be getting 1000 calories per day anymore.  At least in the short term.  She is also okay with a possible weight loss if that is the result. 
So with the imminent removal of our safety net, we will be trading one challenge for another.  That is a fact.  However, I am beyond ready for this challenge.  I know he will continue to improve at this chore called eating.  I hope he might even someday learn to enjoy food. 

Please pray things go well with the removal.  We will attempt the least invasive method first.  We will remove the tube and cover it with gauze and an ace bandage for a few days.  When it is somewhat closed, we need to leave it open to air for several hours each day.  During meals we can cover it and then wait a half hour and remove it again. 
It will mean only sponge baths until it is completely closed.
It will mean leaking when he coughs or laughs or cries hard.
It might not close on it's own. 
And let's face it.  As my friend Amy says, there are Most Kids, there are Some Kids and then there is Tiernan.  :)  The mere fact that he is getting his tube out only a month after ending tube feeds is pretty unusual.  Most Kids keep it without using it for 6 months or so.  But not Tiernan. If there is a road less taken, Tiernan generally finds it and takes it. 
That road could include a laproscopic surgery to staple it from inside.
Again, that sometimes doesn't fully work either. 
I suspect he may need the following intervention.
General surgery to stitch it all up on the outside. 
We shall see.  I guess it can take up to a month to close on its own, so we will have to wait and see what his little body does. 

Please pray he thrives without this tube.  Some kids have to have them replaced.  This would be a horrible setback. 
In the meantime, rather than worry, we will celebrate all his victories!
Adios Tubie!!!!  Don't come back.  :)