It has been a long time since we have reported in on Xander's journey. The changes are happening very slowly, but changes are happening in the right direction!
This starts the sixth week of admission. The walk to the car is getting longer and the camaraderie with the nurses grows, because this is the new normal. The life of having a sick child, the life of the sick child... Down the hall there is a lovely little lady, who is just about one year old. She has been in and out her whole life, each child on 7East has a different story to tell... I continue with the one I know the best.
Xander is continuing to progress out of GVHD IV+ of the GI tract. We believe that with his current output levels maintained for over 2 days, that he is considered GVHD I-II.
Currently, he is allowed to eat the following items:
Homemade chicken broth (no onions or garlic to not push the gut too hard)
Brown Rice crackers (wafers)
Brown Rice & Quinoa breakfast meal (like cream of wheat)
Decaf black tea with Guar gum
...Hopefully adding hard boiled eggs soon
Xander will be following a low FODMAP diet (thank you to Dr. Murphy for your introduction to this) for as long as we can keep him on it. When at home, we will most likely have to store foods in a locked room for a while to help him resist the urge to eat other foods. This child does not have the decision making power that he needs to be successful on his own yet. He'll get there, but for now we have to eliminate the options. We are very careful about what we bring in the room, and keep items out of his reach that he can't eat.