Monday, May 19th

Last night was a bit rough for Dallas, as she was pretty restless and awake on and off. We had a suspicion it was her belly bothering her. Things finally settled a bit after we gave her Tylenol around 3 a.m. She started sleeping better after that, but by around 7am she was stirring again. Her heart rate kept spiking into the 140s, which always makes us stop and wonder what’s going on under the surface. After turning her to her left side and doing some bicycle movements with her legs, she seemed to relax a lot more and drifted off again.

This morning, she was definitely tired, especially during speech therapy. Kim from speech offered some water on a spoon like they’ve practiced previously, but today she held it in her mouth mostly and didn’t seem too eager to swallow. Her therapist wants us to start working with her in the same way on our own twice a day to help get her more time to practice. 

Even through the fatigue, we saw a flicker of something special today. When asked, “How do you spell cat?” her face lit up with more engagement than we’ve seen in a while. Brett slowly sounded it out “C-A-T” like we’ve practiced before at home, and she really responded. Lots of eye contact, blinking, and just being present. He did a couple more words the same way, and although it clearly wore her out and her eyes started to close, it was so meaningful.

In PT/OT, they noted good strength in her neck, though she’s still not doing much tracking. We’re holding on to the small victories, and hoping she’ll get some extra rest and have more energy for an even better session tomorrow.

We also had a big conversation today… the one that’s been on our minds: the “G-tube”. We spoke with Dr. Carrie and reviewed the surgery details. It would be done laparoscopically, using a camera and grasper through a small incision. We were told the first couple of weeks are when complications are most likely, which seems like a fair amount of time to wonder if all is well. Because the surgery would require full intubation and general anesthesia, they’d stop her heparin that day, restart it about six hours post-op, and monitor closely for any bleeding, especially at the surgical site. Dr. Carrie is great—no pressure, but honest. She said if we wanted a nudge one way or the other, she’d lean toward doing the G-tube. Still, we told her we’re not completely sold on it yet . We’d like to hear from Levine and see if D could be given the chance to get the intense therapies she needs there in an effort to get stronger and avoid the G-tube altogether. We’ll know more tomorrow.

Oh, and a very important detail… we had a doggy visit today. 🐶 These visits never fail to lift the mood… for all of us!

So, a lot of thinking and feeling today. Some fatigue, some hope, some hard decisions, and a few bright moments that showed us Dallas‘ spirit shining brightly through.

“Hope is the thing with feathers that perches in the soul—and sings the tune without the words—and never stops at all.” — Emily Dickinson

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