Learning the Power of Pacing 🌼
In support of
Chelsea Brem and Family
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Chelsea Brem and Family
Busy night with Chelsea. She pulled her NG tube out around 8:30 last night. When the team tried to give her medications orally, the taste caused her to 🤮 right away. At that point, we had to pause and decide whether to replace the tube (which was already scheduled to be removed today) or try the medications again more slowly. We chose to try again with careful pacing, and that approach worked. So, boo to last night, but yay to no more feeding tube. In typical Chelsea fashion, she took charge of the situation!
Because the feeding tube was out, we also lost the sitter overnight. Mike was especially on high alert making sure Chelsea stayed safe, as she still needs support with standing and walking and is eager to move independently. She is one determined young lady!
She handled her 6:00 a.m. medications and blood draw without issue and finished breakfast before her 9:00 a.m. meds, which also went smoothly. Several medications were switched from liquid to pill form, which helped drastically. She was very tired and agitated before all of this last night, and it reinforced what we are learning in real time…overstimulation is a major challenge for her. Yesterday was simply too much, and pacing with a low stim environment is essential for her recovery.
This morning she had PT and did great…walking in the hallway, bouncing and catching a ball, and staying engaged throughout the session. Speech therapy is pleased with her swallowing progress. Neuropsychology also stopped by, and OT is planning to try to see her this afternoon.
Rehabilitation is on the horizon, which we’re encouraged by. It represents a shift away from intensive medical needs and toward more structured therapeutic support. We’re consistently hearing from the team that rehab will provide focused therapy time, at least three hours a day, designed to support continued functional progress.
To give Chelsea the best chance to succeed, maintaining a low stimulation environment with very controlled visitation will be critical. We’re grateful for everyone’s understanding as we protect that space for her. It’s hard to believe that just a week ago she was not yet speaking, and today she looked at Mike and said, “Relax. What are you worried about?!” as she tried to get out of bed on her own this morning.! 🙃We’ll keep taking this one step at a time and appreciate all the continued support.💗
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