Tuesday, November 26, 2013

Sweet potatoes, bananas, and eggs, oh my

Good Evening,

We are happy to report that Xander has been able to continue to eat some of the foods that he enjoys on a daily basis (sweet potatoes, bananas, and eggs). Over the last two weeks, the docs have been working on getting him on the path to getting out of the hospital. Most importantly, that means moving to oral medications. In order to move to oral medications, his stools have to show that he is actually digesting the food. It appears that he is indeed digesting the food and is also now on probiotics, and other supplements that we want him to be on. This is great news, as he had been off of them for so long!

Over the past two days we had a bit of a set back with the onset of a skin rash (GVHD rash) and the stool output increasing and changing in consistency (I will not post pictures, but let me tell you, we have LOTS and LOTS of stool pictures). We determined that his body was not absorbing the prednisone properly, so we have since moved back to Metholprednisone (IV version). Immediately, we saw a turnaround in his rash and the stool. So, as of today, that is great news.

Xander continues to receive nightly HBOT treatments (thank you to the Oxford Kids Foundation) and is so far without colds or flu. He did get a fever a couple of days ago, but thankfully it resolved very quickly and has not been a problem moving forward.

As we embark on the 7th week in the hospital, you might imagine that we are dealing with the emotional burden that being in this place non-stop brings. Xander has at least 50 interruptions per day. I believe the quietest time of his day is while he is resting peacefully in the HBOT chamber in South Lyon. A huge shout out to Aaron as he definitely gets the Dad of the Year Award. He has stayed almost every night at the hospital with Xander and has kept him on the right track and continues to lead him down the path of healing. Aaron, you are amazing and wonderful in so many ways!

Molly continues to be the best daughter and sister of all time, so to give her a little something special, I took her to see the Young People's Theatre production of Annie this past weekend. It was a surprise for her, and she had an absolutely wonderful time. I hope she remembers it forever. A big shout out to Jasmine and Ruby for a stellar performance!

Xander has many people that come and visit (thank you so much to all of you!) Sometimes, there are unexpected guests...

"Do or do not… there is no try."

Peace and Love to all of Xander's Followers,


1 comment:

  1. I'm glad to hear Xander is improving... I'm praying he'll be home for Christmas! Until then... may the force be with you!