update on the beaze

Happy Monday!  I hope you all had a great weekend.  We had a nice, low key Friday where we cooked an awesome dinner (deets tomorrow) and then spent Saturday night celebrating my father-in-laws 60th birthday.  It was such a fun party and my brother-in-law came in town as a surprise so that was icing on the cake (for all of us!)

I wanted to do a quick update on Beazy.  The last post I did about Beazy talked about how her EBV was going up and we were going to lower her immunosuppressants (Prograf) in the hopes that her body fights the virus.   The good news is that her count (before we did that) was over 25,000.  After lowering her medication, her number came down to 10,482!  Over cut in half!  

(Trying not to ride the roller coaster over here).  

We are so happy.  The interesting (but not bad or good) news is about her Prograf level.  Since Bea got her liver upgrade we closely monitor all of her numbers but the Prograf is the one that shows if her liver levels (say that 3 times fast) are “in goal” or not.  If they are “in goal” then her body isn’t susceptible to rejection.  If her number becomes “out of goal” – because we have lowered her medication or she gains weight and we need to increase her dosage – her body is more open for rejecting her liver.  Because we have lowered her Prograf so much, her level is now “out of goal”.  It is “out of goal” because we want her body to wake up enough to fight the virus but we are then risking her body waking up enough to fight the liver.  

SO, although her EBV number is going down we are risking her body rejecting the liver.  That shows you HOW important it is to get the EBV out of her body.  We are willing to risk rejection.  She also still has blood in her stool (likely caused by the EBV creating some irritation).  

SO – big day tomorrow.  Blood draw & stool sample in the evening to find out…

1)  If there is still blood in her stool.  If there IS – then we move forward with putting her under on Friday for a scope to find out exactly what is going on.  OBVIOUSLY would love to avoid this.

2)  If her EBV level is still going down. 

3)  If her liver numbers are still stable even though her Prograf level is “out of goal”.

All in all – a lot to keep track of but from the outside – she is happy, eating well, sleeping well and is just such a lover.  We are hoping her insides are just as happy 🙂   

I say this all of the time but just need to say it here – she is seriously such a badass.  She is a tough little girl and Jordan and I couldn’t be prouder of this little noodle and her fight to keep on thriving.  We are so blessed to call her ours.

Check out a little video below 🙂

XO

Hillary

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