Ronald McDonald House is our home for now

Through the generosity of hidden angels everywhere, we are now residing at the Ronald McDonald House next to Wolfson's Children's Hospital.  This place is a life saver!  

Aside from the spacious guest room we currently call home, we are provided with a meal every night.  The coolest part is that you can watch the volunteers cook your meals in their industrial size kitchen.  Eli's favorite was pizza night.  My favorite was CSX workers.  They know how to make a yummy holiday meal!  Beef Tenderloin, green beans, broccoli casserole, mash potatoes, salad and homemade cookies!  YUM!

Tonight we had spaghetti, salad and bun (and chicken tenders for picky eaters like Eli). 

While here there are certain activities like Bingo.  Thursday nights are Bingo nights.  All the kids win a prize.  There are so many toys donated from so many people and the kids love picking the prize they want.  Prizes range from stuffed animals to board games to make-up kits.

After all the kids win their prize, the grand prize goes to the first kiddo who can complete their entire BINGO card.  Guess who won that!?!?  YEP!  ELI!  

By the way, the volunteer who called out the Bingo numbers used to work for Delta as a flight attendant for over 10 years. She's been volunteering at the Ronald McDonald House for 20!  Boy did she have some great travel stories to tell of her years in the air. 

In the meantime Enzo had his NG tube taken out and his stomach is no longer being emptied by suction.  This spot here is his favorite.  Not only can you see the interstate but you can also see the green roof of the Ronald McDonald House. 

We also got permission to take Enzo for a walk anywhere on the premises.  He loves the KID WALK, the bridge that connects Nemours with Wolfson's over Interstate 95.  There is serious traffic every day!  Enzo loves his new found freedom - even as he is still connected to his IV.

As the days go by Enzo improves and he can walk without being connected to the IV.  However, he is tired.  Imagine going over 2 weeks not feeling well.  He is zonked.  We have good days and we have not so good days. 

Unfortunately as I write this post today, we had a little set back.  Enzo slept great last night and began the day with great news from the medical team.  Enzo was to be weaned off the IV while his body becomes accustomed to returning to routine feedings (his formula).  We've been working on introducing liquids for a couple of days by now, but today was the day to lower the dependency of the TPN via IV. 

However today just an hour after the doctor and her team agreed the weaning would begin tonight, Enzo began to vomit, and vomit, and vomit.  Long story short, we will reevaluate tomorrow and maybe get some more ideas passed around.  

It's Papa's turn to watch Enzo tonight.  Although this picture was taken prior to the set-back, we look forward to being able to walk around the hospital with Enzo again once we get the clearance to do so. 

We have decorated Enzo's room with Christmas decor and also with another patient's decor (they were discharged today).  Papa made this little Princess gingerbread house for the little girl next door.  Her door has Christmas decor on it.  If your door has Christmas decorations, it means you'll be hanging out in your room for more days to come. 

Enzo loves his Christmas decorations.  After spending 24 hours with him, it was nice to receive this picture via text.  Look at how happy Enzo looks!  I think he is going to have a good night's rest!

In the meantime, we are all enjoying the company of friends who are coming to visit as well as Nonna who has gone out of her way to make sure Eli is having a heck of a time!  There is never a dull moment!

Eli is getting to explore all sorts of fun places to include the JAX Air station.  It was a real treat.  

As for me, I am enjoying the new places we are discovering such as HAPPY BREW, a new coffee shop that just opened this week.  The best part is that they hire kiddos with Down syndrome.  Jake was a great help.  The Caleb cookies were amazing and Scott really enjoyed their dark roast coffee.  

We encourage Enzo to get out of his room whenever possible.  It's a huge hospital with a lot of Christmas decorations.  So many to see!  Enzo loves going up and down stairs as well as up and down the elevators. 

Yes, Eli decorated the headboards and the portraits in our guest room.  It's been as festive as you can make a home away from home.  Of course he's really enjoying the little surprises we keep finding almost every day when we open our door, courtesy of the volunteers and donors of RMH.

There are other families who will be here a total of 10 weeks, I can only imagine how wonderfully spoiled with love and gifts they have been.  It's good to see so much giving, volunteering and genuine kindness, especially while their loved one is going through their treatment plans. 

After Eli met the Grinch tonight he begged to watch the movie.  So, yes, he got to watch the movie while eating Whoville cookies.  Who doesn't love Christmas movies!

Since arriving December 2nd to JAX and December 9th to the Ronald McDonald House, we have been well taken care of.  It makes me so happy to know that my family is here.  We were meant to be here as everything is falling into place.  Eli is happy at both Nonna's home as well as the Ronald McDonald House.  

I know Enzo will get better.  It's just going to take time.  We still don't know when Enzo will be discharged but the most important thing is to make sure he is comfortable and happy.  We will get to the bottom of this whatever it is.  

Thank you everyone for all your prayers, your words of kindness and for remembering us during this very busy time of year.  We hear you and feel your presence every day!  xoxo