Claudia and Ava began mom’s day today. they did her full physical therapy/range of motion exercises. Ava called to mom, “Nonny” and mom mouthed, “What?” Mom also mouthed, “Ow” when they worked on her arms. Ava used the massager on mom and asked her if she liked it and mom mouthed, “Yeah.” They worked on the IPAD with mom too – Tangrams (hand over hand prompting/full prompt)and they helped her separate and stretch out her pointer finger to move the shapes around. Mom also watched the “Electric Company” on the IPAD as well (she enjoys this—mom was always interested in language and words). They tried to do a “nut and bolt” but mom didn’t look at her hands or the items and didn’t know what to do with it. The last thing they did was the Theraputty in her left and right hands. Mom independently squeezed the putty and Claudia and Ava pulled it. Mom kissed them both good-bye (she does that really well again now).
The speech therapist came in to give us some information about swallowing. What they do at the facility is a type of test where they give mom some food that is dyed---if they see the dye color in either the feeding tube or trach, they know she can’t swallow. The speech person also said that mom needs to imitate certain tongue movements as well in order to eat foods orally. Today, we learned also that, when mom came back to the facility, her vent was on full support. Within the first week, they moved the vent setting down to SMIV (a mid-range setting that allows her to breath on her own alternately with vent support at times as needed). The SMIV vent setting is on 12. It has been on this number for several weeks now. At least mom looks peaceful and content.
When I arrived, mom was sitting in her wheelchair in front of the TV (the Food Channel was on) and she was fast asleep. The nurse came to take her mitts off and mom continued to sleep. The nurse left her “poseys” on her hands (these are the wide, rolled inserts that go inside the mitts so that mom doesn’t curl her hands into fists). Mom seems comforted by holding onto something. Mom slept for a ½ hour and then woke up. I rang the call bell for a suction and 11 minutes later someone came to do it. We used the orange, scrunchy tube first. I put one end of the tube in mom’s right hand and told her to hold on tightly and then I pulled the other end and lifted mom’s arm up, then down, then in and then out. As I moved mom in a direction, I told her the direction verbally as we moved. I also talked into one end of the tube and put the other end to mom’s ear. I said things like, “I love you”… and mom smiled at me as I did this. She also seemed to laugh in her new quiet way too. She definitely liked this game. We tried the hard, solid tubes next---we used them in the same way that we used the orange tube. I gave mom the squeeze toys and placed them in her hands and had her try to squeeze---she couldn’t squeeze without hand over hand assistance. I wrote some sentences on the white board and mom tracked each word with her eyes as if she were reading (left to right) but didn’t mouth anything except, “Today is…” When I left, mom gave me a huge, loud kiss good-bye. Mom is so focused on me now…like never before…it’s like she finds me in the room and gravitates to me immediately after I arrive. Sometimes, it seems to me like mom and I are communicating soul to soul. It’s a strange thing certainly but wonderful at the same time. Maybe mom has entered into the perfect rest of God at last where she is just able to “be” and have joy on some level.
Dad and Terry joined us and they did some range of motion exercise and talked to mom. Dad said that mom moved her arms and head a lot today. After dinner, JoAnn went to be with mom for a while. They did the ‘nuts and bolts’ – hand over hand, the buttons in the slot in the container, the calendar, then mom read Jo’s shirt (Don’t quit 5 minutes before the miracle happens) and raised her eyebrows when she did. JoAnn said that mom held all the items so tightly she had to pry them out of her hands. They read the “All About Me” book, then JoAnn blew bubbles and tried to have mom track them. When JoAnn blew the bubbles at mom, she blinked her eyes and then gave Jo “the look!!” When they were reading, it appeared that mom was reading the words judging by her eye tracking the pages but she didn’t mouth any of the words. One of the nurses told Jo that mom tried to mouth something to her earlier but the nurse couldn’t figure out what it was that she said.
“Here is a trustworthy saying: If we died with him, we will also live with him; if we endure, we will also reign with him.” 2 Timothy 2:14
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