Sunday, May 18th
May 18, 2025
Last night was a peaceful one with PopPop here. He and Dallas both got some good rest, and it felt like a much-needed quiet pause. He headed home to Wilmington this morning, and as always, we miss both him and Papa when they have to head home. Their visits bring comfort in ways that are hard to describe, and their absence is always felt when they go.
There isn't much to report from the ... Continue Reading
Saturday, May 17th
May 17, 2025
A quiet, steady day—the kind we’re always grateful for.
Kristin from Speech came in today and worked with Dallas on her swallows. There was a bit of a grimace when she introduced an ice chip, and we’re pretty sure it was just too cold for her liking. Aside from that moment, she continued to do well with the practice. We’ll take those small steps.
Rounding was short today, but came with a couple of ... Continue Reading
Friday, May 16th
May 16, 2025
Another good night last night followed by a short(er) update today – which is a good thing.
During Rounding this morning, they mentioned that her steroid medication and taper is continuing to go well, now being taken by mouth. Her next IVIG infusion is scheduled for June 2nd. In the feeding department, her sessions were condensed from 90 minutes down to 60, and she handled the change well. We’ll keep an eye on ... Continue Reading
5/15/25 – Happy Birthday!
May 15, 2025
Papa said he and Dallas had a calm evening last night, which is always good – a good day always starts with a good night.
Rounding with the team was short and concise this morning: since she's doing well with her feed volume change, we'll condense from 90 minutes to 60 minutes starting tomorrow. They felt she was ready today, but with it being her birthday, we didn't want to push our luck.
Kim ... Continue Reading
Wednesday, May 14th
May 14, 2025
Today's update is a fairly short one – it was another simple day for Dallas. Overall, she seemed even more alert today, looking around the room, and moving her head from side to side – the PT/OT must be working 😉
We solidified a plan for her to stay on Heparin for the time being, which puts us at ease having stressed about anticoagulant options for the last several days. In the event ... Continue Reading
Tuesday, May 13
May 13, 2025
PopPop shared that Dallas was moving her head from side to side last night, maybe trying to get a bit more comfortable before bed. To us, that’s a win. Movement like that is always encouraging. Otherwise, it sounded like they had a quiet night and managed to get some decent rest.
Rounds were pretty quick this morning, which usually means there’s not too much to go over. Dallas is now off the “round ... Continue Reading
Monday, May 12th
May 12, 2025
The day started with a good visit from the neuro team. Her cytokine panel came back showing encouraging results — inflammatory markers (IL-1 and IL-6) are looking normal. Her IL-10 marker, which is anti-inflammatory, was elevated, which was anticipated. With that, the team has decided to keep Tocilizumab off the table, since we no longer need it to combat inflammation — a big win! She’ll continue her steroid taper and receive monthly ... Continue Reading
Mother’s Day, May 11th
May 11, 2025
Today we got what we hoped for – a calm Mother’s Day with nothing on the agenda.
Rounding was short and simple this morning: Dallas is continuing to tolerate her feeds and had reached her goal volume by 11 a.m. As long as she keeps this up, we’ll look at clustering some of her meds together via the NG tube instead of using the IV. We learned her cytokine panel is back, so ... Continue Reading
Saturday, May 10th
May 10, 2025
We were thankful for the quiet night last night and the slow, easy Saturday morning start that it allowed. Today gave us a much-needed breath, one we didn’t realize we were holding.
We’re officially done with this current round of IVIG. We’ll also start tapering her steroids again on the 14th. Eventually, the hope is to move her to an oral steroid, but for now, we’re easing into things, not wanting to upset ... Continue Reading
Friday, May 9th
May 9, 2025
Last night wasn’t one of the better ones, unfortunately. Papa said she was uneasy or stirring often, and her most restful sleep came in two windows — early on in the night and then again for about an hour this morning. Through most of the night her heart rate stayed in the low 100s to 1-teens range, which is about where it remained though most of the day. A few vocal sounds while ... Continue Reading