Friday, May 16th

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 things—especially her belly—but so far, so good!

If the next day or so goes smoothly, the team plans to reduce her PPI medication to once a day. (That’s the class of meds that helps reduce stomach acid) Her reflux has improved a good  bit, so we’re glad to start stepping down the medication. It feels like we’re shedding something we no longer need, and that’s a good feeling.

Her repeat echocardiogram is scheduled for the 27th. It’ll be helpful to get another look at the clot/thrombus/cast—AKA “the thing” From what we’ve seen in recent scans and tests, it looks like it’s continuing to shrink and is headed in the right direction towards extinction. See ya!

OT spent time with Dallas today, and she did a great job carefully placing coins into a toy piggy bank, and they said it was the best they’ve seen from her yet in those sorts of movements and such. If she’s anything like her Mommy, she already understands the importance of saving 😉

Speech therapy followed right after, but Dallas was more than ready for a nap by then. She didn’t have her best performace, but we all understood given the timing. The upside is they’re planning to try again tomorrow, which is rare on a weekend. Since she won’t have PT or OT then, we’re hopeful she’ll have the energy to give it her all.

And I’m happy to report that the word is officially out—we like dogs and want them to visit anytime. Today we had visits from not one, but two therapy dogs. I made sure to tell everyone to keep them coming!

“Start where you are. Use what you have. Do what you can.” — Arthur Ashe

« 5/15/25 – Happy Birthday!

Saturday, May 17th »