Day 19: Bye Bye Tubie!

Today was a great day!  Today was a really, really great day!  Naomi no longer has a tubie!  The only extras she has right now is an IV for a few more hours, a few sutures on her tummy and nail polish.  She had a pretty good day considering she spent time in the OR.  She got to play in the rehab gym with one of her therapists instead of having breakfast this morning.  She played hard and had a great time.  It wasn't too long after that we were pleasantly surprised that Naomi was going down to surgery earlier than we had thought.  Her wonderful Child Life specialist and her intern accompanied us down there and they showed Naomi what to expect and kept her happily entertained all the way into the OR.  Two hours later we were already heading back up to the floor and quickly went to our last team meeting.  Naomi watched a movie in her room with the intern from Child Life while James and I met with the feeding team.  The meeting was a very happy one.  Pretty much we all wore ear to ear grins while we discussed that Naomi is more than meeting her calorie goals and is meeting her fluid goals and her behaviors are much improved.  We have some goals to take home and work on, mainly keeping up what we've done here and working towards not needing so much reinforcement and rewards.  After the meeting when we went back to the room, Naomi gave us the best surprise of all.  She was hungry!  That is something she has hardly expressed and I realize she had not had anything to eat or drink in 15 hours but she has been on IV fluids only for three days and never expressed hunger before. The rest of the day was spent kicking back and relaxing and enjoying getting to see Sam, Beth, Elijah, Mary and Nana when they got here this evening.  Am I happy with the program?  Delighted.  Did it meet my expectations? It blew them away!  I look forward to many normal years where Naomi is special because of her fabulous performance of "Twinkle, Twinkle, Little Star," for scoring goals in soccer, for telling the funniest joke, or helping a friend in need, not because of how she eats or how many doctors she sees.  Thank you CHOC feeding team, you changed our whole families lives for the better.  I am grinning from ear to ear and crying big, fat tears of joy.

Tomorrow we get a crash course in meal time management with the whole family as Naomi leaves the hospital.  I hope it goes well but I know we have the tools to solve whatever issues arise, who knows maybe the other kids behavior will improve too!  Thank you all for supporting us through this and I hope to continue to update but not necessarily daily as I have been.

Day 19..  17.3kg and no more tubie!

Last picture with a tube!

Enjoying playing a Dora game on the iPad while waiting to go to the OR.

Ready to go!

Hot and tired in the recovery room.

Day 19..  17.3kg and no more tubie!