September 3: Day +63

Hi everyone!

We're a bit tired after a long day. Today was like 2 days in one. Bella had a 9:00 am MRI appointment this morning to get a picture of her head. Yes, I know we just did a head CT scan 10 days ago or so, but Bella's hypotension persists, and as long as it does, the docs have to keep trying to find the cause. At this stage of BMT, the most common cause is infection. Never mind that throughout this hypotensive journey we have had zero cultures come back showing anything, and never mind that we did a full body CT scan and chest MRI already... it just doesn't add up to anything else, so we have to keep looking. Dr. Wagner's rationale is that he'd hate for us to be missing something we know how to treat. You can't argue with that, of course. Hence, the MRI. Bella did fine, and she did well going back on Prisma afterward (we have to take her off her dialysis circuit to transport her down to imaging). THe good news of the day, besides an uneventful trip to and from MRI, was that we D/Cd dilaudid, the narcotic pain killer, as well as the nitrous oxide. After we got back, but before we went on Prisma, we also changed all her line dressings and hear headgear, and her ulcer dressing. It was NONSTOP from 8 till about 2. The timing worked out well because at 3, the plan was to leave for...

... The Great Minnesota State Fair!

I went and picked up Ali from school early, and Angelique finished up a little early so we could all hit the fair for the afternoon/evening/night. We walked to a nearby park and ride shuttle, and rode to the fair for free, and got in for free thanks to free tickets from RMH! That was appreciated, because once you get inside your money simply FLIES out of your pocket! That's okay; it was worth it. We ate all the disgusting food we could handle, rode rides, played with endless amounts of goats, horses, and butterflies, worked on a pretend farm, and got front row seats to the rodeo even! It was awesome. Again, it wasn't without the feelings that someone was missing, but we have to bear that pain regardless, so it is important to "recreate" ourselves through "recreation." In fact, it is VITAL to our overall well-being. Activities outdoors where there is plenty of stimulation are critical to allowing the brain to shift gears and attend to something different. The smell of endless deep-fried food wafting through the air, the sounds of concert stages, rides, and exhibits ringing throughout the grounds, blinking lights, face paint, and seas of humans around every turn... there was PLENTY of stimulation at the fair!

Mommy: "So Ali, what was your favorite part of the fair?"

Ali: "The rides."

Mommy: "What was your second favorite part of the fair?"

Ali: "The rides."

Cheers to the long weekend; may you re-create as you recreate with your family, your friends, your faith community, your self.

Good night. Enjoy the photo collage. I could probably post 3 times as many from the fair, but that would take entirely to long, and I want to go to bed. ;)

Yes, that IS a deep fried twinkie, and YES, IT WAS AMAZING...