Cath today with biopsies to check for rejection. She is now in the step-down unit! Ela has made a complete turn around from last week and is shocking...

Quick update…. Good and not so good news. Good news…no pneumotosis anymore on x-ray! And she walked a lap for the first time in 2 weeks! She is...

10/17/24 Three days ago I signed a consent form for CHOP to do a treatment that has limited FDA pediatric data…a treatment that they don’t use much…This treatment...

10/13/24 Some more hurdles and setbacks. We are so so thankful her heart is not in rejection right now. However, her antibodies are still higher than they should...

NO REJECTION! Praise the Lord her cath yesterday showed that her heart pressures are where they should be for being a month out from transplant. Ela’s biopsies this...

“…while crying is human, to lament is Christian. Lament is how those who know what God is like and believe in him address their pain. God is good,...

Today did not go as we expected, but that seems to be how it goes with Ela these days. As you know her cath was scheduled for today....

Ela is back in the CCU (step-down) unit…again! She is off her continuous infusions and walking a little more. We thank God for the some-what good days she...

Today marks day four of four good days with Ela. Although, our little one still has a lot going on, she has acted a lot more like herself...

The biopsies from Ela’s cath last week showed that she has Antibody Mediated Rejection (AMR Grade 1). Thankfully, the team had already intensified her rejection regimen by the...