Posted: 04-25-2025
Dallas had a peaceful night last night, and started her day off with her final PLEX session of the week. We feel lucky that we were able to keep that schedule on track despite the hiccup in the middle of the week. We managed to escape to the courtyard outside for 4 days in a row, and this time Brooklyn the music therapist was able to meet us out there with her guitar. Nothing like singing “Three Little Birds” while the birds are chirping in the background!
We were grateful for the PM&R team to stop by and chat, particularly Dr. Yipp who saw her previously in 2022. Although not necessarily giving us an exact prognosis, they were able to shed some light on the healing process and give us a better understanding of what’s going on.
They shared that her Imagining shows concern around the pons, near the brain stem area, which is where a lot of the movement and expression control comes from, hence the reason we are seeing minimal body movements and facial expressions at this time. The brain is amazing and can be retrained by making new neural pathways, which we saw in her first recovery journey. However, Dr. Yipp feels her brain right now is not yet at that stage, and is still experiencing inflammation. The goal is to get that inflammation down as step one (PLEX, Tociluzamab, and IVIG are all working together on that), before it can begin to make those new pathways (the true healing process). A question we had was “how do we know if her brain is still inflamed versus it working on creating these new pathways”? And the answer is just by seeing how she is doing clinically (movements, interactions etc and the consistency of each). So, we will continue to observe and encourage those little wins for her!
Her vitals looked really good throughout the day, except for a minor eyebrow raise this afternoon. She seemed to have a little bit of labored breathing and her respirations increased. Over the course of a couple hours she seemed to be taking big inhales/gulps of breath both asleep and while awake. The doc came in to chat but did not seem to have any big concerns and would let the nighttime doc know to keep an extra close watch on her, but she was settled, calm and vitals looking good prior to bedtime.
We’re excited to have a slow and quiet weekend, and hopeful that we’ll see some improvements following the three Plasma Exchanges she had this week.
“Don’t worry about a thing, ’cause every little thing gonna be all right.” – Bob Marley
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Rise up this mornin’,smiled with the risin’ sun. Three little birds. Pitch by my doorstep. Singin’sweet songs!!
What a lovely treat for all!
It is so good to hear the doctors listening and working along with you. Rest, inflamation go away, and hugs.
I’m so glad Dallas has such wonderful doctors who are open to your concerns and questions. The only bird song I could think of was “Blackbird” by the Beatles: “You were only waiting for this moment to arise.” Take care of yourselves, too.
4 days in a row going out and having the music therapist join you!! Awesome!!!
Love you guys💝 Continued prayers!!!!!
💞🙏💞🙏💞🙏💞
I’m so thrilled that you’ve been able to get her outside and that she’s not so restricted to a sterile environment. Birds singing, music therapy…..it’s wonderful.
Continuing to pray. Thank you for the updates. I look forward to them every morning. It sounds like the medical team are all responsive to you and communication is where it should be. God bless you, give you rest and keep you strong!!! Hugs to Dallas!
Love you guys! Sending good vibes and healing prayers 🙏🏻❤️💛💚🙏🏻
Hope you all have a restful weekend, glad she was able to receive the 3 plex infusions..may they help her with her new path to recovery. May the sweet birds 🐦 outside and music fill her with their beauty. You are the champions, best momma and dad a little angel could have. God’s blessings to you all. Sweet kisses and gentle hugs.