Post BMT day 294
+294
We received a schedule for Keira, which bumped up our timeline. We are now headed to FL on Monday, January 2nd in order to make it for Keira’s MRI Wednesday morning. There will be appointments following throughout the week and leading up to surgery on January 12. The plan is that we will remain in FL until January 27th.
Christmas was nice. Surrounded by people we love and celebrating Jesus-the only gift we need. Perspective has taken on a big shift in the last couple years and was shifted again this past week with Keira’s diagnosis. It truly is one of the silver linings of this medical journey. A great appreciation for what matters and a better ability to let go of what doesn’t. Plus, I’m tired. That too makes it easier to focus on only what is important.
Important these last few days was securing lodging and flights. Tim is still in limbo working out his schedule, but the 3 kids and I are set. And no, we didn’t buy Southwest tickets.
K still is battling the effects of the concussion. She makes a very valiant effort to hide how she’s really feeling, but her usual vibrant self is muted. We need her brain to heal as much as possible before she goes in for brain surgery so I am thankful she can rest.
Tate now has a swollen wrist and right elbow to add to the growing list of swollen joints. We don’t know yet what exactly is going on. She’s had a couple appointments already this week and will have a couple more including rheumatology. It doesn’t appear that she’ll get in for her procedures before we leave, so we are just praying she can hold steady for the next month. I’ve yet to get anywhere with coordinating her Homecare supplies, nutrition and fluids for Florida delivery. Hopefully tomorrow as it’s already Wednesday. She’s doing so much better with food the last few days (steroids are a great help for appetite!) We are looking forward to the day when supplemental nutrition whether through IV or feeding tube, won’t be necessary. The last few days were better ones for food. Pain remains a big challenge.
Thank you for all your encouragement and prayers over this past week. I honestly still feel like the addition of Keira’s diagnosis almost can’t be real. It’s a lot. But we’re ready to move forward and tackle this thing.
FL address if anyone would like to send Keira a card.
1415 1st Street North Jacksonville, fl 32250