Outside Of The Box Family

Ladies and Gentlemen, let me share with you the most awesome BIG little brother, Eli!  And the crowd goes wild (cue applause and whistles) I just have to share with you the genuine heart of Eli.  With all that is going on, he has stepped up his game of love and gentleness.  There has yet to be a day with whining and complaining about trips to the hospital, living in a pseudo hotel room at the Ronald McDonald House or not being able to go check out the local attractions!  In fact, he has got Mama doing 100 burpees every morning!!!  Future Navy SEAL!! Eli doesn't even complain about having to do homeschool.  In fact, he's been so diligent, we are quickly approaching our 100th day of school right on schedule!   Even with access to television and toys, Eli is reading "Make Your Bed" by Admiral McRaven (his choice) and Eli continues to draw every single day!  Who is this child we are raising?   Eli has grown up fast as the little brother of a brother with special needs.  H

 Sorry, for the delay....I had hoped to bring you good news of a discharge date......but...... Hello everyone!  Do you see anything missing?  Yep!  No more NG tube sucking contents out of Enzo's stomach!  Doesn't Enzo's face look so amazing?  This is progress!!!!   Last week, since my last post, Enzo was given the go ahead to stay off suction for a few hours, then longer, then finally take it out.  After that, it's all about getting the stomach to work.  We started with clear liquids, just sips.  After that, 2 ounces of his formula every 2 hours, then the next day 4 ounces every 2 hours, then 6, then 9.  We were up to 9 yesterday.  AND Enzo was no longer needing TPN!!  PROGRESS!!! BUT... Today at 5AM Enzo woke up abruptly and vomited.  After cleaning up, changing linens and getting him back to sleep he did it again not too long after.  Between 5AM and 10AM, Enzo had 5 episodes of vomiting.  It felt like we were back to square 1 again.  However, this time was different. 

  Surgery Jan 3rd.  Check Recovering. Check Check  Having fun! Check Check Check!  (watch the whole video - it's worth the emotions) Here's a quick update:  Since the surgery Enzo has had an NG tube to suction his stomach.  What is coming out started as a charcoal black liquid and the goal is to get it to a clearer color liquid.  Right now it's between a green smoothie and green tea color liquid.  It's going in the right direction! Enzo has good days. He is happy, enjoying his games on his iPad and making friends with everyone who passes by.  He is officially off around the clock medications and hardly needs anything!  What a crazy strong boy! Then there are some tough days.  Yes, sometimes Enzo does need meds, or rest or just a snuggle.   These days of desperation and confusion are getting less and less and that is what is making me happy!  It's not easy recovering.  There are days where Enzo falls asleep in the middle of the day and there are days when Enzo can

  On Wednesday January 3rd, Dr. Villalona performed a Roux-en-Y, Gastric Bypass on Enzo.  Similar to the one you read about regarding weight-loss, but not the same.  The purpose was to create another way for Enzo's stomach to drain into the intestines.   Enzo is surrounded by wonderful people surrounding him such as Child Life specialist Tessa.  Enzo is always in good hands and happy!   Enzo went into surgery showing Tessa how to play "Tag with Ryan" (thanks Meaghan ha ha).  He has really nailed that game and has become quite the champ! Everyone is impressed with Enzo! After 3 hours Enzo's surgery was complete and Enzo now had a new GI system, sorta.  Enzo was exhausted.  It was a long day.   Dr. Villalona explained to us that Enzo's duodenum, pancreas and stomach is severely inflamed.  Enzo's stomach has been stretched and enlarged.  The healing process is going to take days.  Minimum 3-5 days for the connection of the intestine and the stomach to heal and th