Tube Feeding Awareness Week

This week is Feeding Tube Awareness Week.

One year ago I posted this to Facebook as my status update:

I remember a few years ago when the Terry Shivo case was being highly covered in the media a local radio DJ said that it was his opinion that anyone who needed a feeding tube was a waste of space. I remember being completely floored at his ignorance and feeling so depressed about if for a few days and then REALLY mad!  Here's hoping more people become educated on feeding tubes through awareness...this beautiful face is definitely not a waste of space - nor are any of her cool 'tubie' friends!!

Alex began having feeding problems when she was roughly six months old but she was able to still suck from a bottle so we weren't overly concerned and thought we would have time to figure things out and come up with a plan to get her eating solids.  A feeding tube came as an added bonus (insert sarcasm there!) when we were admitted to the Pediatric Intensive Care Unit for a virus, which led to dehydration and subsequent seizures and she lost her suck/swallow coordination.  I had absolutely no clue what a feeding tube would mean - and honestly, it wasn't until she actually came out of surgery that I was able to fully digest what it meant - I was so naive back then - I remember thinking, OK, we'll get this tube thing for a couple of weeks (we were in the hosptial almost 5 weeks)  and once we get her better and really work on getting her to eat we'll be good to go. 

And....here we are 11 and a half years later!

  

I really wish I had known before hand that she was going to have the tube surgically inserted.  I only have 2 pictures of her little baby belly without a tube. 

 

Having a tube and tube feedings is all Alex knows - and clearly from her laid back self here having her 'breakfast', she's pretty much OK with it :)

I love this picture - with her pump in the forefront and her sticking her tongue out - I like to think that she's sticking her tongue out at that DJ!

 

And then finding it extremely funny that he could possibly think her sweet, beautiful, happy self could be a waste of space!

So, Happy Feeding Tube Awareness Week!

 

I PROUDLY say: