Tuesday, April 15th
Posted: 04-15-2025Our 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 normal “turning” rotation, which can help also with her digestion.
The neuro team stopped by and will link up with Dr. Dujmovic (her neuro immunologist) and PM&R to help us to make a more proactive care plan – for future use – and one that would give us better points of contact for helping the ongoing navigation for care/questions/etc.
Dr. Barton, from PM&R, came by and is going to chat with neuro about possible Botox injections next week for Dally’s calf area. Since her ankles are a bit tighter, the injections will help to relax the muscles. It will also make for easier PT sessions, as she won’t have to overcome the added tightness.
We were happy to welcome Brooklyn from Music Therapy again today. She brought her “Baby Taylor” (a miniaturized version of a full-sized Taylor guitar) and played some tunes for us. She also brought a couple of other instruments, like a rainstick and some sort of miniaturized steel drum. We’re loving that the hospital has this program, as it also helps us to get a change of pace from the day-to-day.
While the coughs were fewer and more far between today – and we’re super thankful for that – Dallas did have a little spit up again. It was just after a cough, and only like a teaspoon, but during one of her feeds. It just goes to show how tricky of a balancing act it is to get the duration, amount, and frequency just right, but I feel we’re getting close to having it dialed in.
“You may not control all the events that happen to you, but you can decide not to be reduced by them.” — Maya Angelou
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So many good steps forward! Surrounding you with love from the Northwest.
We used Botox a lot for muscle tightness at my last job; stroke patients or patients with some sort of paralyzation. It helps a lot! Down side is over time they can start to stop working, increase blood pressure, sugar levels, and can only be given every 3 months at most. Just be cautious, as I know you are. Sending lots of hugs 🩷
I know she loves the music time, I’m glad the music teacher can go to her room!
Continued prayers… I love you guys!!💝
💞🙏💞🙏💞🙏💞
Sounds like a wonderful staff, music, instruments.
Glad her mucus is subsiding. Hope pt and ot get easier after the botox.
Hoping this journey will be heading towards her complete healing..sending my love, gentle hugs and kisses to you all..
I love the music therapy. Sometimes music reaches parts of us we don’t even know we have. I hope you guys allow yourselves some time to care for each other. This is such a long haul. I can’t imagine the stamina it takes. Sending you and Dallas lots of love!!! At least she continues to take positive steps forward.
Love that she has music available! Sending love!
I will miss her at the Easter Egg hunt. I can always get my hands on the bunny suit if you want pictures. I will keep the prayers coming
Oh Brett, You 3 and PopPop are in the thick of it. But, you have each other and really good medical people it sounds like. I listened to a program the other day about the fairly recent promotion by the neuro Drs concerning music, so I am happy that music is included in Dallas’ plan. I am thinking about you and sending prayers up for you all. Love, Reyn
Sending so much love to sweet Dallas and you all from Cleveland! 💗