Thankful for Tubie

Hailey has been out of the hospital for a little over a week now and oh what a week it has been.

I really wanted to hate the g tube and I do for the most part.  I mean, I hate that she can't eat cake and candy.  I hate that she can't have salad or bread.  I worry about how she is going to do on Thanksgiving tomorrow with all of that food around and how she is going to do at her cousin's birthday party this weekend.  How am I supposed to explain to her that she can't have any cake after the Happy Birthday song?

But here is the flip side.  We have been dealing with Hailey's pretty severe behaviors since she was about 3 or 4...some of the behaviors began even before that.  The head banging, the rocking, the sensory seeking behaviors, the self injurious behaviors and then the aggressive behaviors.  We have had her on a few different types of medications over the last few years and she has been in behavioral therapy for as long as I can remember.  I expected those behaviors to continue when we got home from the hospital...but they haven't. 

Some of them have remained of course.  The rocking and the sensory behaviors are still there.  She still pulls her sister's hair occasionally to see what reaction she will get and she throws things and gets frustrated.  But for the most part, they are dull in comparison.  And right now she isn't on any behavioral medications at all.

It is actually quite amazing.  I love it.  I don't know how long it is going to last or if it I am going to regret typing this out (you know the old spoke too soon analogy) but I'll take it for what it is for now.

The sad part of all of this is.  I have been thinking that maybe her behavioral stuff has been more medical for the last 7 years then any of us realized.  I mean maybe she was refluxing and aspirating so badly that it was creating a need to have the behaviors.  Maybe she has been silently choking on her food and that was her way of trying to tell us.  I look back and see all of her flapping at dinner, the vomiting when she would swim, the grabbing and hitting...Maybe she was hurting.  That makes me sad.  It makes me sad that we were trying this whole time to modify her behavior and here it was something else causing them...and that she was most likely in pain.

So although I do place some blame for the tube on the ENT who did her botox treatment, in the back of my heart, I am also thankful that she developed this swallowing problem.  Without the swallowing problems, without the tube, without the botox we would still be feeding her lactose which obviously doesn't agree with her...we would still be trying to modify her behaviors that were most likely caused by reflux and aspiration.  

So this year for Thanksgiving, I am going to be giving a small and quiet thank you to Hailey's new and shiny g tube which we are affectionately calling "Tubie".