Celebrating at Sea World

This past month we reached some pretty big goals in the Hanes house.  First of all Ethan celebrated his 6 month heart birthday!  Making it to the 6 month mark without big complications is another small sigh of relief.  I asked after the transplant when we would feel like we could breathe again and was told at the one year mark.  So 6 months is a small sigh but we are that much closer.  Ethan did give us a little scare back at the beginning of May.  Some of his lab numbers were rising and we weren't exactly sure why.  With his labs they watch many things.  A few of the things they watch closely are to see if his other organs are "happy".  One of the risks of transplant is the possibility of having other organs fail due to the toxicity of some of the drugs Ethan is on.  In this particular situation Ethan's liver numbers were high.  The doctors did not seem alarmed, however there was some concern.  With that concern comes the talk of it could be this, this or possibly rejection.  As a parent of a heart transplant kid that is one of the worst words you could possible hear coming from a doctor.  When you hear that word your heart just stops and it's hard to breathe.  Unfortunately, that will always be a word in the conversations we have with Ethan's doctors.  Luckily, we were able to determine that the liver numbers were rising probably due to one of the medicines he was taking.  We were able to confirm that his heart was strong and not rejecting after and echo and his 6 month heart cath.  Such a relief! 

The second celebration, which is what made the Sea World trip, was that Ethan is now potty trained!!!  Since our situation over the past year has been a little crazy it made this task somewhat difficult.  Ethan was on the verge of being ready to start potty training right before he got sick.  We were waiting for Maddison's arrival and then were going to take the next step to potty train Ethan.  So much for our planning!!  Since Ethan was in the hospital so long it was just easier to leave him in diapers then try to potty train him on the Berlin.  Then once we got home, he was just more comfortable in diapers and really didn't care much about going to the big boy potty.  So finally, in April I decided to bite the bullet and give it a shot.  We made the potty chart, got all his underwear out, and started talking about the big boy potty.  Ethan had very little interest.  We even read the potty book and bought M&M's for bribery.  Finally one night when Perry wasn't home I let Ethan run around with no diaper after his bath.  My hands were tied up with getting Maddison ready for bed and I hear Ethan say "oh no" and start crying.  Well, he had gone poo poo on the living room rug.  There was a little more to this wonderful scene but I'll spare you the details.  This really hurt Ethan's ego and the next morning he refused to wear a diaper.  He did have a few accidents and occasionally doesn't get to the potty in time but WOW, was not expecting things to be this simple.  Any ways, Ethan's reward for filling up the potty chart was getting to go to Sea World.


On Memorial weekend we packed the car and headed down south.  We dropped Maddison off with my parents, since her patients would have not lasted at Sea World, and took the boys down to San Antonio.  A few of our concerns with going to Sea World was of course germs, which is an everyday worry for us.  Once you start thinking of germs it's sickening to realize how disgusting public places really are.  Our other concerns were the sun and how hot it might be.  A few of the medicines Ethan is on cause him to be sensitive to the sun, so we have to be extra cautious about him being outside.  God knew we needed a much deserving vacation and special time for our family because it was overcast in the 70's and raining the day we went.  Which also helped scatter the people around and so we were able to keep some distance from the huge crowds.  The boys had a great time and we were all exhausted after the day.  Of course Ethan's favorite things were the ice cream he ate and getting to see the Elmo show.  Ethan was also allowed onstage and took a picture with Elmo and Cookie Monster.  Caden is not a fan of costumes so he wanted nothing to do with taking a picture.  Ethan just grinned and gave Elmo a huge hug!  If the people in the costumes only knew how much that meant to a little boy who has gone through so much!

Tomorrow Ethan will have his 7 month heart cath.  These are always long days but if all goes well he will get the month of July off from caths!!!  He will have one doctor appointment and then he is clear until the end of August.  We could not be more thankful for the gift Ethan has received and how well his health has been.  We constantly are thinking of our donor family and how they lost their sweet angle almost 7 months ago.  God is good!  How can you not believe that when you see Ethan, Caden, or Maddison walking around?  These kids are living proof that God is with us all the time!

"For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."
-Isaiah 41:13