Courage is not the absence of fear, but rather the judgment that something else is more important than fear.

- Ambrose Redmoon

The way is not in the sky. The way is in the heart.


Friday, March 16, 2012

Enjoying our "holding pattern"

A few weeks ago, Daddy had to go to Boston for a couple of Xavier and I packed up and heading West!!  We are super fortunate that Nanna come to visit us every couple of weeks and Pappy comes to pick her up, so we get to see them on a regular basis...but we really miss Cousin Connor, Uncle Tripper, Great Grandma, and many of our other family members and friends.  There are even a few that Xavier has never met.  We had a wonderful time playing and visiting.  Xavier went to church and met some of his biggest supporters.  All in all it was a great trip.  We made it home just in time to go to our local cardiologist.  We had not had an ECHO since January, so I was getting a little on edge.  As long as I hear, no change I relax a little. Of course I pray every day that we will go in and hear that the leak has gotten less, but as long as it is not any worse, I am one happy mamma.  And that is exactly what he said.  It is still there but no worse.  Everything else looks good.  We are in, as he puts it, a holding pattern.  We head to Philly April 3rd and 4th for an MRI of his heart and brain.  This test will give us a 3D image of his heart and will give us a definitive number on the leak.  Before it was 4-18% of the blood was leaking I am praying that it is the same or less.  It will also let us look at his brain and make sure that there are no more clots.  We will also use all this information to make some decisions about medication.  He will be sedated, but an MRI is not invasive.  I still dread the idea of handing my baby off to the doctors again.  We should not have to be admitted, but you never know.  So I will go prepared.  We are also planning a little vacation to Fort Myers to visit Grandma and Grandpa I will be sure to post some pics from sunny Florida!!  Thank you all for reading and sharing in our lives.  Please continue to pray for Xavier.  Every day our heart community has to say goodbye to another warrior.  Some are young and some are older, but they all touch our hearts.  Please know that we thank God for all the love and support.  Some people have contacted me about helping us with Xavier's medical bills.  As of right now we just have a pay pal set up at:  In the coming months we will set up a fund raiser page and a not for profit organization to help with his care.  I am even planning a fund raiser in his honor (any help would be awesome) stay tuned!!!

 Bath Time at Nanna's

 Xavier loves Cousin Connor!

 Playing together!
 With Nanna and Great Aunt Donna
Out for a walk!

1 comment:

  1. I love that you are sharing all of your stories and experiences with the world. You may never know how what you go through touches or inspires someone else. XOXO! Mousey