Feeding Clinic- Week 6

Originally published 1/25/13

My New Years resolution last year was to “Plan Less, Do More.”  Instead of constantly planning what I want to do “some day” I wanted to start making them happen.  It was one of the most enjoyable years I have had.  I took an art class, painting classes, took my first trip without the kids, and just enjoyed life.  It was such a great year that this year as the New Year was about to roll around I began to ponder what I wanted to try to do this year.  I finally decided that this year I want to learn how to Celebrate!  And not just the big stuff: birthdays, anniversaries, etc.  But all the small accomplishments that my family has.  Which is why I am thrilled that today we are celebrating Tube Free Friday.  That’s right!  Effective this morning, NOTHING is going into their g-tubes.  It still seems a bit surreal that this hospitalization has brought about such drastic results, but it has....Even when it hasn’t been easy.  

On Friday I started being trained to feed the boys.  It seems kind of silly that a parent would need to be “trained” to feed their own child.  But, I’m not joking when I say that the boys feeding process now has an official protocol that we will need to follow in order to maintain their growth and continue to make progress.  Meals are still a challenge but by following the protocol the boys are responding well enough to not need to be supplemented any longer via their g-tubes.  If that’s not something to celebrate....then you are reading the wrong update!  ☺

Some meals have gone tremendously well with Zac eating and drinking fairly independently, and Dom needing just a bit of help.  Other meals are really hard.  I guess I’m telling you that because if you happen to see us out to eat (which we probably won’t be doing any time soon, but nonetheless)  please don’t judge us if the meal isn’t going well.  I think we are going to try our best to stay in for a while until we have a better handle on meals, but I know that one day we will be at Red Robin and I’ll be telling the boys “Take a bite.” for the 30th time during the meal (which is according to protocol) and the people next to us will be about ready to scream at me “If he wanted to take a bite he would!”  The therapists have backed us in saying that “Trust me....if you let him continue to not take bites, he never will.”  It’s forced me to readjust my thinking to the whole meal process, but I think overall I’ve accepted it.  Or stated more simply, “I’ve drunk the Kennedy Krieger Kool-Aid and it tastes good.”  The progress is there.  I’m thrilled!

We finally had a chance to see the National Aquarium on Sunday.  It was beautiful.  I didn’t know what to expect.  If you ever go, expect it to take your breathe away.  

It was like walking through a live Nemo movie (minus the storyline of course!).  Dom and Zac saw all of their favorite water animals...even a tank full of Sharks!  They have a whole room devoted to jellyfish.  Zac thought they were amazing and kept giggling like crazy whenever they wiggled up and down.  It was hysterical!

Hopefully, we are going to go back one more time before we head home.  It has been the highlight of our trip so far (minus today of course!)  

Unfortunately, our field trip this week was cancelled due to icy roads (They had a dusting of snow....and were afraid the roads would be too icy! haha!)  In order to curb their disappointment they held a bowling tournament.  Dom and Zac preferred to play bowling on the Wii, but they did join in the festivities for a little bit (the crowd was a bit too rambunctious for them.)  Dom even got a spare!  

He definitely got his dad’s bowling skills!

So all in all it has been a great week...full of fun, excitement, a little bit of stress, and a whole lot to celebrate!  

P.S. Thank you to everyone who has taken the time to send words of encouragement, prayers, good vibes, packages to the hospital, donations to the benefit, and overall encircling our family with lots of love and support throughout our hospitalization.  Justin and I have been overwhelmed by the outpouring of support.  This whole process was made much easier by knowing that we had a cheering squad supporting us and ready to cheer on the boys.  We are excited that our hospitalization is drawing to a close and can’t wait to celebrate all the boys accomplishments once we are home.  I was told that the benefit date has been changed to March 10th due to an accidental double-booking.  The benefit will be a great time to celebrate all the boys hard work, and thankfully, I don’t think it will be our last celebration.  We’re going to keep the g-tubes in for a while, but at some point, if they continue to be successful, we are going to have to “pull the plug” and remove their tubes.  I think the year of celebrations may be our best yet!