Post BMT +217
+217
I haven’t updated for a week. A combination of not too much new happening, trying to find a home rhythm and having family here. G&G Benrud are here visiting from WI! Tate finally was able to get in the hot tub and said it was the best Make A Wish ever! Almost a year after being granted, she’s getting to use it. We are grateful!
We added magnesium to her meds that seems to be helping with the temperature affected nerve pain-thus being able to be in the hot tub! Her appetite continues to not be great and we’ve made zero progress on her J tube feeds. She is still sleeping a ton but is much more engaged and interactive and smiley when awake than we’ve seen in well over a year. We started home PT officially today and are so happy to have Abbey back. She has big plans for Tate and I’m excited to see the progress. As the neurological issues have an ebb and flow, and we’re still waiting for an appointment, I really appreciate Abbey’s experience. She felt lots of involuntary “movements” in her assessment today. We are hoping some of it can be contributed to De-conditioning and could improve. Tates tendons, ligaments and joints are all very stiff. She has been complaining of things feeling stiffer lately. This makes me pause with a quick prayer that this isn’t a worsening symptom to accompany remaining diseases. Again….we are praying with time and pt work, it will just improve. Tate will also get started with OT in the near future.
Prayers needed: Tim’s dad recently was moved full time into a nursing home. He fell this morning and broke both his femur and hip. He is medically fragile and they are unable to get him through surgery. Pray for comfort with pain management and for a peaceful state of mind as his dementia also increases. Prayers also for Tim’s mom, Sandy and his sister, Becca who both shoulder the decisions and caregiving.