Wednesday, November 3, 2010


"When you're stumbling
it's gonna take a little time
to make it to the other side
so don't miss the diamonds along the way."
- Sheryl Crow
Superhero was the theme among my girls for Halloween. Even their favorite dinosaurs joined in. I was glad Amanda was able to get out. Weekends have become a lot more challenging for her since her Friday night Methotrexate dose was increased. She's wiped out for most of Saturday and Sunday. I was happy to see her determination to be able to get out and enjoy herself so much. It meant a lot of naps and pain medicine. But she had a really good time. Her superhero costume seems so fitting.
I got such a kick out of Will in his costume. He waddled just like a penguin from all of the warm layers of clothing. It's hard to keep him warm because he's so skinny. And unfortunately, he is loosing weight. His doctor's are concerned. He tested negative for food allergies, and this means a huge expansion with his diet and a relief on my part (been there, done that!). But he's had allergy-like symptoms for some unknown reason. The doctor is leaning towards an inflammatory bowel syndrome. It's apparent something is wrong. With every increased food item he seems to struggle with vomiting, gagging, and a lot of indigestion. We'll meet with endocrinology tomorrow and the feeding clinic/GI doctor next week. I'm hoping between these visits we'll finally get moving towards a better diagnosis and treatment for him because what we are trying now isn't working for him.

1 comment:

  1. Amanda is very much one of my superhero's that I look up to.