Thursday, May 30, 2013

Oral Tacro means more time disconnected

I was so elated to see Xander walk out with Aaron this morning when we met up before school. What a  wonderful feeling!

We are happy to report that Xander has moved to oral Tacrolimus. This is such a big step because it removes his "attachment" requirement from the pole significantly. He is also starting to wean from the TPN-Lipids, as he is now starting to consume more food. As we have talked about this is a very slow process. He is currently able to eat crackers, rice crispies, eggs, chicken, rice and broth. Yes, he is already sick of it and asked for Pastrami! We'll hold on that for now :-)

Some of you have received my graphic version of Xander's stools, of which I won't go into detail here. But let me tell you all that I will be really happy to not have to examine poop of any kind for a long time. It's just not my forté. Thank you to all of the nurses out there, you deserve to be paid more.

The second ECP treatment was today, and so far it has gone very smoothly. He has to wear sunglasses for 24 hours post treatment, or be in a dark room. This is a very easy side effect to deal with compared to the side effects of the steroids.

ECP Machine

ECP Shades

He will get another ECP treatment tomorrow and three next week.

We have stopped everyone from mentioning the "D" word. When it comes, it comes. Until then, we are happy that he can call today a good day. Thanks for the visit George!

Peace and Love to all of Xander's followers,



  1. You look awesome in your shades, Xander!



  2. Very cool shades, little dude! Far out! Wacko, dude!

    Love Grandpa Howie dude and Grandma Rhondi dudette