Feeding Tube Awareness Week 2014

This is the start of Feeding Tube Awareness Week 2014.   Feeding tubes mean a lot to us!!  After all, they helped save Parker's life.  

Last year, I wrote a blog post about Parker's Feeding Tube Journey.  You can read that HERE.

While we are in much the same spot as we were last year, my little guy looks much more grown up now!!

Parker showing off his g-button

You may or may not be able to tell in this picture but Parker has had some weight gain troubles this year.  He pretty much stayed at the 30 pound mark for nearly a year.  He is finally above that now due to a different formula, increased calories, added lipids and some additional "real foods" that we are blending up and adding in with his formula.  I hope to continue to increase the "real foods" but we are taking it pretty slowly for now. So far he's had "smoothies" made with spinach, bananas, applesauce and green beans.

While we are very grateful for the feeding tube, the ultimate goal, of course, is to not need it anymore.   That's a long process though.  Teaching a child to eat with his mouth when he hasn't done that for three years is definitely a challenge.   The most important things I've learned during Parker's feeding therapy sessions is to make the process as positive as possible, don't be afraid of huge messes, let Parker explore and just keep trying, trying, trying.

We've been doing more taste trials for the past couple of months.  Parker's favorite thing to eat is applesauce mixed with pixy stix sugar.  Afterall, that's probably what I would eat for every meal if I could too!

Parker is still pretty opposed to taking food off of the spoon when I offer it to him; however, he occasionally does open his mouth up big enough for me to sneak the spoon in.  His preferred method is to dip his index finger into the food and then suck it off his finger.  Hey, whatever works!!

Meal time for Parker pretty much just means he is going to make a huge mess and get his food everywhere. He does enjoy the mess-making though and handles the different temperatures and textures fairly well so that's a start.  I look forward to seeing how much progress he will make in this area by next year.   He will likely still have the feeding tube, but that's OK.  It's been hugely helpful for us and has allowed my little boy to come so far!!