Beads of Courage



Ethan's favorite nurse, Courtney!



The 3rd of May marked the one month anniversary that Ethan has had his Berlin Heart.  We had hoped by now that we would have received that special heart but that was not God's plan.  Ethan is still doing really well.  His daily schedule consist of physical therapy, playroom time, walks around the hall, musical therapy,  and a nap.  He really enjoys getting out of his room and walking around saying hi to all the nurses, especially the blonde ones!  His favorite nurse, Courtney, comes down from the ICU once a week to visit and play.  Ethan really loves her!!  She has been super great to him and us.  She will always have a special place in our hearts.  When Ethan asks for something that we can't get him, he'll say "nurse" and then if we tell him the nurse can't do that he'll say "Courtney".  It's hilarious, I guess he's learning how the system works!! 



Ethan playing in the playroom.



Ethan, Caden, and MeMac catching butterflies.

Pictures of Ethan's friends.



Since the hospital is now our home I decided to decorate Ethan's room to feel less like a hospital room.  I printed pictures off of Caden and Maddison and other family members.  I also had some of  our friends back home send us pictures.  Ethan likes to walk over to the pictures and tell everyone who they are.  I've also hung up pictures we have colored and I put his name up on the wall.  He also has a few pictures and the most precious letter from a few of his friends from home. I bought a couple sets of sheets that are on Ehtan's bed.  He has Elmo and Texas Rangers!  When we watch the Rangers play Ethan will chant "Let's Go Rangers!" Oh and of course, we have toys all over the room!! 



One strand of Ethan's beads.



One of the coolest things that I was able to hang up were his Beads of Courage.  Every time Ethan goes through something that takes courage he gets a specific bead that represents what he went through.  We strung those beads on a wire and then I hung them up around his room.  Ethan gets beads daily for his dressing change, visits from the doctors, and having a LVAD.  One of the beads I'm really looking forward to him getting is the glass heart bead for transplant and the bead of his choice for getting discharged.  I'm amazed at how much courage Ethan has. The doctors keep telling us that he will not remember any of this, and I really hope he doesn't.  But, he has been so strong and courageous during all of this.  Sometimes I wonder if he has more courage than I do.  As a parent you try and be strong for him but lots of time it's Ethan's strength that gets me through.  He's been through so much and he's just 2 years old.  I wonder sometimes what he thinks about being hooked up to this machine that we have to push around everywhere.  It's fun to watch him when the doctors come in, sometimes he'll take their stethoscope and put it exactly where it needs to go on his chest.  Then he'll undo the cover on his Berlin and then take the mirror and flashlight and place those where they need to go.  One of his favorite things is to help the nurses push his medicines through his feeding tube.  The nurses all get a kick out of that!  I was told today that the nurses have been fighting over who gets to take care of Ethan!  I'm guessing the trying to keep the girls away has already started for this 2 year old! 

Ethan's beads hung up in his room.

I'm looking forward to being able to write about getting the call that Ethan's getting a new heart.  I just pray it comes soon.  The hardest thing for me right now is trying to have patience and to let God take control.  Not that I really have any control when Ethan will get a heart but trying to stay positive and not get down when it doesn't happen.  Instead I try to count our blessings and be thankful he's still with us and doing so well.   Every morning when I wake up one of the first things I do is think, could this be the day! I'm just ready to be all together again.