Day +26 - A Tough One

Gracie just didn't feel well today. She was fussy all day long. She slept a good bit, and played a good bit, but it's clear she is uncomfortable, and not at the top of her game. She needed a few extra bumps of her pain meds to keep her comfortable.

She still vomits sometimes, and doesn't really want anything near her mouth. However, she loves to "brush her teeth." We clean her mouth with these little pink spongy swabs soaked in saline. She gets three swabs about 3-4 times daily. If she had teeth, her dentist would be so proud! It's so cute to watch... awww.

Numbers Update:
It figures that as soon as I show off by posting the critical numbers and Gracie's perfect report card, the white cell counts go down. Today, Gracie's white cell count was 2.7, and her Neutrophils were 1.7 (I think). Her creatinine clearance continued to go down, today at .73. I'll try to update the graphs and post about once a week as well.

At the end of the night, we called the resident in to ask about a few things, most notably some red bumpy rash looking stuff on her knees, and some skin peeling off of her hands. It could be early GVHD and it could be nothing. The resident sat through all of our questions and the answer to most was that she'd discuss it in the AM with the attending(s), which is a fine response because hopefully that means the doc will have thought about it prior to coming in for rounds in the AM.

Dr. Orchard and Teresa Kivisto, the primary doc and nurse running the Hurler patient studies, stopped by today to check in on us. It was great to see them. Dr. Orchard assured us that fluctuation in the cell count numbers is expected, and also noted that Gracie's counts are still relatively high which eased much of our worry. They also said that we have "an impressive blog." At first I was a little surprised and nervous that they read it, but then I was happy they do. It's a great way for them to keep up to date on Gracie's overall progress beyond just the numbers. Plus, we just post the truth as we experience it. :)

Today was a tough day. Seems like when Gracie has a bad day, we all do. By the end of the night, Uncle Mack was so crabby!!! Here's hoping that we all feel better tomorrow - especially Grace. Good night everyone.