OT was a lovely day! As it always is, of course.
We started today off with a therapeutic shower and my basic ADL tasks. She has said that I am able to scoot towards the end of the bed, that I need assistance to pivot to my wheelchair, and once at the shower I use the grab bars to pivot to the shower seat! All of this was done with minimal assistance, but she did show my husband what to do as his caregiving role. After I lathered, rinsed, and repeated I went over to the sink for my oral care! All in a towel of course. Once done I was ready to get myself dressed for the day!! I do just fine with dressing my upper body, but my lower body I definitely need assistance. Oh! And when I put on shoes, I need assistance still. Something about bending over and not falling to my death, I can't seem to grasp yet. Baby steps!
My patient goal for the nursing staff is cute! It says, "To get better and be able to walk and talk."
That's a good goal to have!!
With my doctor today...well, let's go back to the beginning of the day. The respiratory therapist took out my trach. She told me to cough, and she pulled it out! For OT I was having some left shoulder pain, so she iced it and told my family what the icing protocol was, and they all nodded that they understood. So, the doctor wrote all of this down and agreed with what was done. He then said I have mild hypotension and he wrote a lot about my eyes. As it is known to us, I am a rare specimen. I can only move my eyes up and down. Which is not common for those like me. Others can't move their eyes vertically. I can't, however, move my eyes from left to right. So that is noted along with the following:
Discussed vision impairments and educated on cranial neuropathies and how they could be affecting her vision and extraocular movements. Discussed potential treatments including surgical treatment of extraocular muscles; however, would defer until her brain has mostly healed. Would recommend outpatient neuro ophthalmologic follow-up.
Ahh, you see that! I have seen the neuro ophthalmologist, and she has referred me to her motility surgeon. He is the best in the area, apparently. My muscles on the outside of my eyes are extremely weak and there is literally nothing I can do to strengthen those muscles. We are relying on the brain to heal! Who knows at what level my brain is at for healing. Tomorrow, I get to see the motility surgeon to see if MAYBE he can help me. I mean, it has been 14 months at this point. We shall see what he says!! Hope and pray for all good things, please!
Music therapy is so wonderful! Especially when your therapist sings so sweetly and can play the guitar wonderfully!! She asked me what I wanted to hear, and I told her spiritual music. She then read off some songs and I chose, "How Great Thou Art." She notated that I was relaxed and had my eyes closed and breathed in and out deeply as she sang. See!! I knew Mindfulness before I ever learned about it in an educational setting! My teacher would be so proud.
Today I got to use the Vector in PT today and only used the bar anteriorly. I got to pick my music of choice as I worked out. I chose, "The Killers." What can I say, Carolyn is awesome like that. I was experiencing a bit of pain today and at my PEG site. The nurse gave me some medication to help with the pain. I swear, it's usually the PEG site or my head that experiences the most pain.
With SLP today, she loves telling me stories. Then she asks me questions about the story she told 15-20 minutes later! Today I answered every single question correctly. BAM! She also asked me questions about our previous session the day before and I answered every single question correctly. DOUBLE BAM!! Now today my mom and stepmom were present for the session. However, when we then go to responsible learner for today - it only says me. I think this is around the time when they realized my family was not going to be with me when I went home. Gosh, I wish I knew!!!
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