Thursday, October 8, 2015
Reagan slept well last night and woke up sweet this morning. Although good today, she's been sensitive and very vocal. She was doing this crazy thing where she'd take a big gasp of breath and then squeal...I think she was freaking her nurse out a little. She had two therapies today, PT and OT. During PT we got her up in the stander for a bit (12min), but her legs were turning bright red and both the stander and the AFOs just aren't cutting it right now so we decided to cut it short. She's got an appt next week to get new AFOs. Her tone has also increased so we're talking to her PM&R doctor about possibly trying botox again in her lower legs. It's just really hard to get her weight bearing right now...her heels never even touch the foot plate when in her stander (it's like she's standing on her toes). Not good. This afternoon she had OT and that went a little more smoothly. Yesterday and today her therapist was able to get in some really good stretching because of her tone being decreased (in her upper body at least). She's very concerned about her getting curvature in her spine during these years when growth spurts are likely so we just really need to watch her closely and try to keep her sitting straight in her tomato chair and put her in her wheel chair as much as possible too! Hoping we can get her to sleep tonight. She keeps dozing off and then popping back awake the second I move!