Easter Sunday, April 20th
April 20, 2025
This Easter Sunday began with a peaceful rhythm: PopPop helping Dallas with some gentle stretching and doing some modified yoga poses from her bed.
The morning unfolded with a bit of festive cheer. Heather, Mumsie, PopPop, and I decorated her room with Easter touches—pastel decor, bunny ears, and a few cheerful bunny-themed things tucked around. We also put together goodie bags for the nurses and doctors, a small token of thanks for ... Continue Reading
Saturday, April 19th
April 19, 2025
Dallas had a slight elevation in her temperature last night — 99.1 — which gave us a moment of concern, especially since the surgical team had reminded us to watch closely for any signs of fever. Thankfully, it didn’t seem to stick, and with her regular Tylenol every six hours, it likely helped keep the temp in check while also offering her a bit of comfort.
The surgical team came by during their ... Continue Reading
Friday, April 18th – Central Line, Surgery, and a Bit of Relief
April 18, 2025
Last night was a restless one for Heather and me. The open-ended questions swirling around today’s central line placement, whether we’d start PLEX (plasma exchange), and just the general unknowns left our minds spinning. This morning didn’t do much to help – Dallas’s heart rate was noticeably lower than her norm, and while that might’ve not been much of a concern to her team, it was enough to amplify the unease.
During morning ... Continue Reading
Thursday, April 17th
April 17, 2025
A short a simple update for today; no PT/OT, music therapy, etc. The focus was on Dallas getting PLEX, Plasma Exchange, and what it entailed - risks, precautions, etc.
We felt good after talking with the “PLEX” folks, as far as the “if this, then that’s” as to how some of these issues would be fixed, should they occur during.
We spent the rest of the day waiting to hear from the surgery team ... Continue Reading
Wednesday, April 16th
April 16, 2025
Another peaceful night with PopPop, and we’re thankful for these last couple of stretches of rest she’s getting.
This morning, a small spark of something new: when Heather scooped her up, Dallas lifted her head just a touch. Tiny, yes… but real. Her feet and fingers wiggled too—without stimulation—just little moves all her own. PT/OT stopped by, and while she was still super sleepy, they caught more of those same movements.
Neuro team update: ... Continue Reading
Tuesday, April 15th
April 15, 2025
Our Dallas had another good and quiet night with little coughing; She and PopPop got some good and decent sleep.
PT/OT back – got to do some more tummy time and stretches, which certainly must have felt good. While sitting and supported, Dallas was able to engage her neck control a bit more, unassisted and holding it up for brief moments. The PT/OT wants to promotes her getting on the belly in the ... Continue Reading
Monday, April 14th
April 14, 2025
PopPop was on night shift again and said the night went good with a few coughs, but no cough assist needed. We feel that Dallas has been making more productive/stronger coughs, that allow her to more easily clear mucus and such. In fact, today is the first day since we started using cough assist, that she didn't need it during the day.
Dallas had her morning meds, including another dose or Tocilizumab – ... Continue Reading
Sunday, April 13th
April 13, 2025
Dallas struggled a bit while trying to sleep during the first half of last night. Some time around midnight, Heather noticed that her respiration rate and heart rate were elevated perhaps signifying that Dallas wasn't comfortable. After the nurse got her some Tylenol in her and Heather slipped into the hospital bed, Dallas slept with no issues all night – she just needed some mommy snuggles!
Around 5:30am this morning, she got a ... Continue Reading
Saturday, April 12th
April 12, 2025
Slow and steady wins the race seems to be Dallas’ motto right now. A little bit of a restless night lead to another day of sleeping for Dallas. It’s a catch 22, trying to get her sleeping good at night but yet allowing her to sleep when she can get it. Docs started Melatonin tonight to see if it can aide in her getting a better night’s sleep.
We see the most minute ... Continue Reading
Friday, April 10th
April 11, 2025
Dallas had a bit of a restless night last night, between diaper changes, coughing, and overnight feeds. She had a cough assist early this morning, but the RT (Respiratory Therapist) indicated that unless Dallas coughs, or the machine encourages her to cough, it wouldn't help much. Throughout the day she did have some productive coughs, which usually calmed things down pretty quickly afterward. We feel that the effectiveness of her cough might ... Continue Reading