Thursday, September 3, 2015
Reagan had a rough night last night. She was not falling asleep so we gave her clonidine and it backfired! It made her go crazy! Mike tried his best to calm her down but eventually we had to give her oxycodone. It still took a while but eventually she did doze off. I think she slept fairly well. I was exhausted. It feels like lately we go to bed every night completely and totally exhausted. Reagan has been pretty vocal/high maintenance all day today. She had two therapies and school today but everyone was really just trying their best not to piss her off! She was very vocal which can easily escalate, so everyone was walking on egg shells. During PT we attempted to get her in her AFOs/stander but that didn't last long. She was really acting like her right AFO was hurting her and then once we stood her up in the stander, she made it clear she was not going to tolerate that! We're still not sure what's going on with that right leg. Her hip x-rays came back fine, so we're going to have to get some x-rays of her lower leg when we go back in for her scoliosis x-rays. We're hoping nothing is going on with the bone, but if it's increased tone (which we think it is), the solution is not any more clear cut. She's had botox in the past and it didn't seem to do much if anything. We're not sure if that's something worth revisiting or really what steps to take. But right now we can't even get her up in her stander! This afternoon both OT and school/vision/OT came. Again, there wasn't a lot they could do with her, but I guess something is better than nothing. Tonight she's been a little burpy but not gaggy at all and she has cold/clammy hands and feet. Overall she's in good spirits but just getting a little more sensitive/vocal/needy!