Getting slowly to work...

Sara is flat beat today. She had quite the day.

She spiked a fever earlier - out of nowhere. Well, being overly careful about infection, we went to alert. By the time I got to Sacramento she was down to 99 something. Probably another neurogenic fever. They did put her moving to another facility on hold, however...

She had two trips in the cardiac chair, one and a half hours each. The second one she was so tired she slept in the chair.

Had physical therapy this morning, and a second session to show me how to work with her in the late afternoon. The therapist showed me the difference between a reaction, tone and a purposeful movement. We went over several different places of different ones. She explained to Sara that she has to work anything she can when she can. They evaluated her and she's not ready for PT yet, but will evaluate her weekly until she is. The therapist encouraged me to teach other family members how to flex her and for me to keep up with working with any movement she has.

She had occupational therapy come evaluate her. I didn't get to talk to them. But they are working on her hand.

And this evening the speech language pathologist came in because he heard I was there. He explained to Sara and I that he is looking for a repeatable physical movement. He tried different facial movements, looking for something other than the eyelids, to work with. He told her how a communication system works and what she needs to be able to do before they can tailor one to her needs. He also said that his job is to evaluate those movements, and work with her to re-learn to swallow. Once she can repeat any small movement he can call in a specialist to help design a trigger for her.

So, it looks like it is still early for her. That's ok. She is doing everything she can, and working very hard already. She is already doing things they didn't think she could. But, now she has to figure out how to repeat a movement on command over and over. When she's ready and able is soon enough. I asked her and she is glad to finally getting some help doing something to help herself...

I just love seeing her smile...even if it is all crooked and weird looking right now. The fact that she smiles at all is just amazing..