Today is Lenny's 19th birthday!!
Claudia began the day with mom. She did her full physical therapy/range of motion exercises. They also used the IPAD. Claudia and mom traced over the alphabet in script--hand over hand prompting--of every letter from A-Z. Claudia kept asking mom if she wanted to continue to do the activity and mom kept saying, "Yes" so they kept doing it. Claudia then wrote some words in script on the IPAD Blackboard but mom couldn't read the words that Claudia wrote in script. Mom is able to read in print. Then Claudia wrote the word, asked mom to read it, mom couldn't, then Claudia would read the word, mom would repeat it. She then asked mom if she wanted to read/write names or items and mom said, "Items" so Claudia continued to write the names of items in script. Mom always preferred script before all this happened to her. At one point, mom did try to write and try to put the stylus to the IPAD but couldn't really do anything. There were times when mom's grip on the stylus was tight and good, but at other times, mom's grip was weak. Then they did some numbers on the IPAD.
While Anthony was with mom (and partially Claudia), she was being fed. We have noticed that many of the people who feed her, do so in a rushed manner. They shovel the food into her mouth in large heaping spoonfuls, don't allow her to feed herself, forget to give her a drink in between bites, and follow one spoonful of food too closely to the last one. They also still haven't brought the right type of cup for mom to drink from (not a plastic or paper one). Some of the aids and one nurse feed her well...but the majority don't. Today, the Occupational Therapist came to feed mom or to see if mom could feed herself. The therapist didn't try very hard to have mom feed herself. Anthony made many suggestions. The therapist, rather than listen to Anthony, became annoyed. Finally, at one point, the therapist took a full, large brussel sprout on the same utensil with potatoes and tried to shove it all in mom's mouth at once!!!!! Anthony and Claudia both asked her not to do it and to cut the food. The therapist told them the food is already as mom needs it to be---but not true. She finally turned to Claudia and Anthony and asked them if they would leave the room during her "session" with mom. They refused to based on the idea that the therapist would just choke mom privately without supervision. The therapist then asked them if they wanted to feed mom and Claudia volunteered to (the therapist asked sarcastically). Claudia told her to watch while she taught her about "backward chaining" and that she is a behavioral therapist. The occupational therapist refused to watch, learn...and left. Claudia left and Anthony was called into a meeting then with the head of therapies, the physical therapist, the social worker, and the head of nursing. They asked for a run down on the problems and Anthony conveyed the concerns we had very eloquently. He did an excellent job!!! He is one of mom's biggest advocates. He is also one of mom's best clinicians too. They all said that mom would get speech and Occupational Therapy for only 2 weeks unless she showed improvement. How can someone improve without therapy??!!!!!! The system is exasperating!!! When they finished talking and saying they'd take care of everything, Anthony gave a report to the physical therapist who said he'd be in to see mom again shortly. Anthony works hard on mom's legs.
Late this afternoon, when Claudia returned, mom said something to Claudia and the sentence contained the words, "hearing aids" so Claudia asked, "Oh your hearing aid doesn't work?" and mom said, "No" so Claudia took it out and checked and, sure enough, the hearing aid didn't work. Claudia changed the battery and it worked again. She asked mom, "Is that better now?" and mom answered, "I guess so." Claudia then saw and spoke to the head of therapies and the speech therapist and she showed them the video she took of mom feeding herself. The head of therapies was surprised but the speech therapist said she already saw mom doing that. Claudia also told them that mom can use the regular utensils and doesn't need the adaptive equipment at all. The head of therapies said he'd come to watch mom eat next week.
Dad was with mom during the afternoon and evening. They held hands and talked and watched TV together. When I arrived to see mom, she smiled broadly and said, "Hi." Since she was eating dinner when I arrived, I didn't want to disturb or distract her while she ate so I just sat and smiled at her. She ate all her dinner. She had some soup (it looked gross though--the name of it was "Thickened soup???"), fish sticks (which she wasn't crazy about), mashed potatoes, vanilla milk, peaches and cole slaw. When she finished eating, I talked to her and kissed her an d held her hand. She held tightly to dad's hand though!!
Tonight, Anthony Michael, Samantha, and Con came to see mom tonight. They talked to her and told her about their day. They watched TV with her too. Mom talked a lot to them and smiled alot. They couldn't understand the majority of what mom was saying though. She began to get sleepy before they left. They kept telling her it was Lenny's birthday and that she should tell him Happy Birthday when she saw him later.
Lenny came to see mom and to tuck her into bed tonight. He said that he and mom talked a bit and that she grabbed his cell phone at one point and so he asked her what her phone number was. Mom replied, "I don't know" but when Lenny said the first 2 numbers, mom said all the rest! She did the same for our phone number too. She told Lenny Happy Birthday and that she loved him too.
"May the God who gives endurance and encouragement give you a spirit of unity among yourselves as you follow Christ Jesus," Romans 15:5
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