Good Morning Everyone!

I hope you all have had a great Christmas!  Finley enjoyed unwrapping presents and spending time with his family.  Since Thanksgiving, we’ve had a lot of changes with Fin.  His Leucine ultimately spiked to 615 (normal range 50-200).  We are still unsure what caused the abrupt spike but theorize it could have been additional food intake or a short term illness (which he hides well!).  We ended up making a formula change and received lab results yesterday and his Leucine is now 72!  We’ve also discontinued bottles by mouth and give his formula exclusively via pump and g-tube.  He is doing great with eating foods and drinks plenty of water out of a straw sippy cup.  We also went to transplant clinic this week and re-certified his listing status as 1B.  Now that he has been listed for over a year, we should be steadily climbing the list.  All of his transplant labs were normal and the Doctors have no concern with moving forward.  All in all, Fin is doing great and awaiting the “phone call”.  Until then, we will keep living life to the fullest! 

Hope you all have a safe and Happy New Year!

Love,

The Strothers