Thursday, June 5th

We’re now one week in at Levine Children’s Hospital and starting to get acclimated to the daily routines, life, and everything else that comes with being here. One of the biggest challenges was her waking up between 3-5 a.m. — For. The. Day. Since adding a little midnight melatonin, it seems to have improved. Shout out to NP Cheryl for the recommendation 🙂

Since Dallas has been non-verbal thus far into this journey, we’ve been encouraging her to “use her signs,” such as “all done,” “yes/no,” etc. There’s an ASL signing program called Signing Time that she used to watch often to learn her signs. I put one of the episodes on her iPad and the muscle memory started to kick in — her left arm and hand started moving almost immediately! While the signs weren’t being properly formed, she was trying to do them, which was so exciting to see. We’re also seeing other movements, like her trying to rub her lips together after chapstick is applied, and that little grin we haven’t seen since her heart surgery… it’s making a comeback!

One of our favorite things, therapy-wise, has been the use of e-stim in her PT/OT sessions. Once strategically placed, the pads are dialed in to find her comfort level — just enough to get a muscle contraction when activated. They’ve been able to simulate arm and leg bends and extensions. These movements help her to exercise, wake up the muscles, and also help establish the necessary neuroplasticity needed to bring these types of movements back “online.” The therapists make it fun for her — things like kicking a ball away or knocking a small car off a ledge. With Dallas, the sillier, messier, or more fun it is, the better!

We feel that since some of the e-stim sessions, we’ve noticed much more head and neck control and lots of looking around — both turning her head and eye tracking. Heather spent some time with Dallas slowly teaching “Nooo,” showing her the lip movements and tongue placement, which Dallas mirrored by placing her tongue forward on the roof of her mouth. Getting a clear “yes” and “no” is one of our immediate goals, and I think we’re getting close. We’re also starting to see some subtle up/down and side-to-side head nods, which will be so valuable once more consistent.

This afternoon, we learned that the initial plan is a preliminary discharge date of July 3rd. While this may change, there are some clearly defined goals for Dallas — such as establishing yes/no, better head and neck control, and the ability to sit up on her own. As these goals are met, she’ll be challenged with additional ones, and therapy could be extended if we’re on board and the team feels she’s continuing to progress. It’s bittersweet — we miss home so much, but we also know that getting 3–4 hours of therapy each day won’t be possible once we’re out of this inpatient setting.

Overall, we feel comfortable here and encouraged knowing that the team has a vision — they see that there’s a decent amount of potential recovery to be had, and we share their optimism. All of the therapists seem to work well together and toward the unique goals that Dallas has. Having only 13 rooms on the inpatient unit means we’ve gotten to know some of the families and other kiddos on our floor. There’s a strong sense of community and familiarity, seeing the same folks each day — many of whom are doing their therapy sessions at the same time. We’re excited to see what the coming weeks bring and look forward to watching Dallas continue working toward her goals.

“What lies behind us and what lies before us are tiny matters compared to what lies within us.” – Ralph Waldo Emerson

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