Claudia and John began the day with mom this morning. They did mom’s range of motion/physical therapy exercises and talked and laughed a lot. John had her laughing alot. Mom also used the squishy balls to exercise her hands while they were there. John held one end and spun it and mom held her hand against it. They left them on the tray and she would occasionally pick them up and squeeze them. They tried to do a crossword with mom but she only got 2 words: the clue was, "Employees last words" answer “quit” and the second clue was, "A spring month beginning with 'A'" answer “April.” Claudia's approach to the crossword was to write the clues and have mom read them along with a line for each of the answer's letters. They filled in one letter then another then another and mom read the answer. My approach was to read everything aloud without any visuals at all. I also would sometimes skip a word that she couldn't guess and go back to it. Anthony and Anthony Michael came next and talked to mom and watched TV. They worked on mom’s legs. Claudia said that mom lifted her right leg off the bed but it took a long time for her to do it. Mom fell asleep for a while then woke and was relaxed and quiet but in a good mood. Dad and Flo, Marty, and Maureen came to see mom next. They all talked while mom listened. Terry joined the visitors next. Mom helped Maureen sing Happy Birthday (it is Maureen’s birthday today!! Happy Birthday Maureen!). Mom also laughed when they told a story about the guys playing golf years ago. Lenny and I joined dad after everyone else left. Dad and Lenny did mom’s full physical therapy/ range of motion exercises. Lenny talked to mom and told her all about college. Then Lenny put his head on mom’s bed beside her and fell asleep as mom stroked his hair. Mom was tired by this time. She didn’t have anything to say…wouldn’t talk…almost couldn’t from being tired. She would nod off at times for a few minutes and then wake up again. Lenny and I took dad out to eat. When we returned, mom was still fast asleep so we tucked her in for the night.
"If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and purpose. Philippians 2:1-2
Sunday, February 27, 2011
Saturday, February 26, 2011
Mom Update, February 26, 2011, Saturday
Mom had a great day today!!! She was so present. It was just what we all needed.
I began the day with mom and found her just out of the shower and they had put her in the wheelchair. She was awake and the TV was on but she looked tired. I asked mom how the sub CNA was today and if she was nice, mom mouthed, “I don’t know. I think.” I thought I would try to do a crossword puzzle from one of the “mind stretcher” books we bought for mom a long time ago but never used. While I am not very good at crosswords, mom was an expert!!! She began each day, before the stroke/aneurysm, with a cup of coffee and the crossword. She paid attention and interested at first as I read the hints aloud and filled in the blanks but didn’t offer any answers at first. One of the hints was “Shuts with Force” so I read it to mom and said, “It begins with ‘s’” and mom mouthed, “SLAMS!!!” Another clue was “Married Secretly” and mom didn’t say anything but I said, “Hmmm…Eeee….” and she mouthed, “ELOPE!!” The next clue was, “Cotton gin inventor: Eli__” Mom mouthed, “Whitney.” Next, “Ancient Roman’s robe” I told mom, ”It ends with OGA” and she mouthed, “TOGA!” Another clue was, “Mixed-nuts nut” so I read the clue and told mom the word had an ‘H’ in it and started with a ‘CA’ and mom mouthed, “CASHEW.” She kept falling asleep on and off between interactions with me. A one point as she closed her eyes, I asked, “Mom?” she mouthed back, “What Kathy? What do you want?” then I said, “this thing stores grain. It’s on the property upstate, it starts with an ‘s’ and ends with an ‘o’ and corn can go in it….a siiiii….” Mom mouthed, “SILO!!” I said, “A cookie…a cream filled chocolate cookie that starts and ends with an ‘o’…an orrrrr….” Mom mouthed, “OREO” I said, “Something you put on toast…butter and….” Mom mouthed, “JELLY?” I said, “Prime time TV host that starts with JAY and last name starts with L….JAY Llll…” Mom mouthed, “Jay Leno” The nurse came to do mom’s trach care and mom answered a question about the crossword while the nurse was there and we all laughed and applauded mom. The question was, “Topeka’s state” and mom mouthed, “KANSAS.” Then mom said, “I’m staring at nothing.” I asked, “China’s continent..it starts with Aaaaa…” Mom mouthed, “Not Asia?” I said, “Yes, that’s it! ASIA!” Suddenly, mom said, “I have to go to the bathroom” then we continued the crossword puzzle. The next one was, “Herbal brews….oh what I like to drink” Mom shrugged her shoulders. I said, “Hey, what do I like to drink???” Mom mouthed, “Tea?” Correct. I gave mom the next clue, “Fire hydrant attachment…and it starts with ‘h’…” then I was distracted by someone and when I turned back to mom and the crossword I asked, “What was the clue again?” mom repeated it!! “What do you attach to the fire hydrant?” The next clue was, “To fuse like metal…with fire…” Mom mouthed, “WELD.”
Anthony, Con, Anthony Michael and Sammy came next to see mom. We did some more of the crossword puzzle and then mom began to laugh at Anthony’s jokes. Anthony Michael, Samantha and I went to see “127 Hours” (unbelievable movie!!). While we were gone, Anthony did a clicking sound with his tongue and asked mom to do it and she did. Mom worked with the orange tube by pulling and holding on to it and extending her arms with Con. Terry and Dad joined Anthony and Con shortly after we 3 left. They watched Jean’s movie, “Just Like Joe” and talked. Anthony worked on mom’s legs and she was able to raise BOTH legs!! She raised the right leg independent of the left, but she could only raise her left leg in tandem with the right. They watched TV and laughed and talked a lot. At one point, mom put her arm around Terry and hugged her and also rubbed Terry’s back. When Anthony, Con and the kids left, mom hugged the kids---a real hug!! First time in many months! I began to do the crossword puzzle again and the clue was “Overly trusting…begins with ‘n’” and mom mouthed, “Naïve” like she was annoyed that I thought she wouldn’t know it or something!! They put mom back in bed and Terry stayed with mom while dad and I went to dinner and the movies with Claudia and John and Debbie (Claudia’s friend). We saw “Unknown” (I love to go to the movies, as you can see!!). Terry stayed with mom all evening. I came back to tuck mom in around 9:30 and Terry was just leaving. Terry said mom slept for 2 1/2 hours after we left then she woke up and had been awake since. They watched TV and talked and looked at pictures on the bulletin board beside mom's bed. When I came into mom's room, she was awake and still looking at the bulletin board. I said hello and she smiled broadly and seemed glad and surprised to see me. I told her we all had a great day today and she agreed and smiled. I told her I was here to put her to bed for the night and that she should sleep all night and be awake tomorrow with us. She said OK. Then we prayed together...we finished with the "Our Father" which mom said every word to. We spoke about God's love and peace and rest for a while. I kissed mom and she kissed me and I told her I loved her and she told me the same thing. I said I had to go and she mouthed, "I want to go too" but she didn't look sad. She looked very content and peaceful.
"For you are the fountain of life, the light by which we see." Psalm 36:9
I began the day with mom and found her just out of the shower and they had put her in the wheelchair. She was awake and the TV was on but she looked tired. I asked mom how the sub CNA was today and if she was nice, mom mouthed, “I don’t know. I think.” I thought I would try to do a crossword puzzle from one of the “mind stretcher” books we bought for mom a long time ago but never used. While I am not very good at crosswords, mom was an expert!!! She began each day, before the stroke/aneurysm, with a cup of coffee and the crossword. She paid attention and interested at first as I read the hints aloud and filled in the blanks but didn’t offer any answers at first. One of the hints was “Shuts with Force” so I read it to mom and said, “It begins with ‘s’” and mom mouthed, “SLAMS!!!” Another clue was “Married Secretly” and mom didn’t say anything but I said, “Hmmm…Eeee….” and she mouthed, “ELOPE!!” The next clue was, “Cotton gin inventor: Eli__” Mom mouthed, “Whitney.” Next, “Ancient Roman’s robe” I told mom, ”It ends with OGA” and she mouthed, “TOGA!” Another clue was, “Mixed-nuts nut” so I read the clue and told mom the word had an ‘H’ in it and started with a ‘CA’ and mom mouthed, “CASHEW.” She kept falling asleep on and off between interactions with me. A one point as she closed her eyes, I asked, “Mom?” she mouthed back, “What Kathy? What do you want?” then I said, “this thing stores grain. It’s on the property upstate, it starts with an ‘s’ and ends with an ‘o’ and corn can go in it….a siiiii….” Mom mouthed, “SILO!!” I said, “A cookie…a cream filled chocolate cookie that starts and ends with an ‘o’…an orrrrr….” Mom mouthed, “OREO” I said, “Something you put on toast…butter and….” Mom mouthed, “JELLY?” I said, “Prime time TV host that starts with JAY and last name starts with L….JAY Llll…” Mom mouthed, “Jay Leno” The nurse came to do mom’s trach care and mom answered a question about the crossword while the nurse was there and we all laughed and applauded mom. The question was, “Topeka’s state” and mom mouthed, “KANSAS.” Then mom said, “I’m staring at nothing.” I asked, “China’s continent..it starts with Aaaaa…” Mom mouthed, “Not Asia?” I said, “Yes, that’s it! ASIA!” Suddenly, mom said, “I have to go to the bathroom” then we continued the crossword puzzle. The next one was, “Herbal brews….oh what I like to drink” Mom shrugged her shoulders. I said, “Hey, what do I like to drink???” Mom mouthed, “Tea?” Correct. I gave mom the next clue, “Fire hydrant attachment…and it starts with ‘h’…” then I was distracted by someone and when I turned back to mom and the crossword I asked, “What was the clue again?” mom repeated it!! “What do you attach to the fire hydrant?” The next clue was, “To fuse like metal…with fire…” Mom mouthed, “WELD.”
Anthony, Con, Anthony Michael and Sammy came next to see mom. We did some more of the crossword puzzle and then mom began to laugh at Anthony’s jokes. Anthony Michael, Samantha and I went to see “127 Hours” (unbelievable movie!!). While we were gone, Anthony did a clicking sound with his tongue and asked mom to do it and she did. Mom worked with the orange tube by pulling and holding on to it and extending her arms with Con. Terry and Dad joined Anthony and Con shortly after we 3 left. They watched Jean’s movie, “Just Like Joe” and talked. Anthony worked on mom’s legs and she was able to raise BOTH legs!! She raised the right leg independent of the left, but she could only raise her left leg in tandem with the right. They watched TV and laughed and talked a lot. At one point, mom put her arm around Terry and hugged her and also rubbed Terry’s back. When Anthony, Con and the kids left, mom hugged the kids---a real hug!! First time in many months! I began to do the crossword puzzle again and the clue was “Overly trusting…begins with ‘n’” and mom mouthed, “Naïve” like she was annoyed that I thought she wouldn’t know it or something!! They put mom back in bed and Terry stayed with mom while dad and I went to dinner and the movies with Claudia and John and Debbie (Claudia’s friend). We saw “Unknown” (I love to go to the movies, as you can see!!). Terry stayed with mom all evening. I came back to tuck mom in around 9:30 and Terry was just leaving. Terry said mom slept for 2 1/2 hours after we left then she woke up and had been awake since. They watched TV and talked and looked at pictures on the bulletin board beside mom's bed. When I came into mom's room, she was awake and still looking at the bulletin board. I said hello and she smiled broadly and seemed glad and surprised to see me. I told her we all had a great day today and she agreed and smiled. I told her I was here to put her to bed for the night and that she should sleep all night and be awake tomorrow with us. She said OK. Then we prayed together...we finished with the "Our Father" which mom said every word to. We spoke about God's love and peace and rest for a while. I kissed mom and she kissed me and I told her I loved her and she told me the same thing. I said I had to go and she mouthed, "I want to go too" but she didn't look sad. She looked very content and peaceful.
"For you are the fountain of life, the light by which we see." Psalm 36:9
Mom Update, February 25, 2011, Friday
Claudia began the day with mom and said that she was awake, alert, happy, and talkative!! PTL!! As Claudia did her range of motion exercises, she played David Brenner on the IPOD and let mom listen with the headphones (Claudia has a device that allows one person to use headphones while the other person can hear through a speaker). Claudia said that mom was laughing a lot as she listened. Mom was cracking up! Mom even laughed while the head of respiratory was there…and each time mom behaves normally, everyone there at the facility is surprised. Frustrating. The head of respiratory came in and said that the vent PSV was going to be lowered on Monday. Basically, with this lowered, it means that mom will have to demonstrate the ability to initiate breathing on her own; the ability to start the breath…ability to start each breath on her own. Once mom demonstrates this ability, then the vent can be lowered all the way down to the lowest SIMV setting and then she goes on vent/CPAP mode and then the trach collar. Right now the PSV is set at 14 but it will be lower. When Claudia left mom, she left David Brenner on for her to listen to. Claudia came up with the idea of starting each day with something funny in order to improve mom’s affect. Sounds like a good idea. Claudia said mom mouthed, “Good Morning” to one of the CNAs who came in to work with her.
Anthony came next, and said that mom was sleeping first but he got her awake. He did her full physical therapy/range of motion and then they played with the pegboard and pegs. They laughed a lot and he said she mouthed a lot to him too. It wasn’t long before Anthony adapted the pegs to become a sword and then he and mom were sword-fighting!! She was laughing a lot and then Dad came and Anthony told her to get dad on his nose because it is the biggest part of him and she laughed and hit him on the nose!! Anthony also clucked his tongue and asked mom to do the same and she did several times. Then he asked her to stick out her tongue and she did that too a few times. Anthony said that, while he was there, one of the nurses (who usually doesn’t work with mom) came in to give mom her “medication” --- Anthony asked what “medication” that would be, and was told she was being given heprin again!! Dad and Anthony then spoke with the facility doctor and the doctor left the room and returned to say, “I took her off that, she won’t be having that anymore.” Maybe that was what was making her so tired? The head of respiratory and the pulmonologist came in to see mom and concurred that the vent would be lowered on Monday---the PSV portion. At one point, Anthony made believe he couldn’t spell the word ‘sword’ and he asked mom how to spell it and mom said, “Hmmm…ummm…s…o….r….I can’t remember” and Anthony said, “Don’t worry, I can’t spell it either!” Mom was the family grammar and spelling resource person…everyone in the family used to call her for correct spelling and grammar. Anthony said that mom also tried to reach for the remote for the TV too. He gave it to her and she tried to use it but couldn’t remember how. Dad said that mom got quiet when Anthony left. Dad said that mom cried last night when he and Claudia left.
We heard that mom’s CAT Scan of her sinuses and the barium swallow test are being done at 6:30 a.m. on Thursday, March 3.
Mom talked to the head respiratory therapist and the pulmonologist when they came in. She answered their questions. She shook their hands on command—when the pulmonologist asked her to shake his hand, she raised her hand and shook it!! Then she shook his hand. Dad said that, when he talked to mom and tried to get her to do things and talk, she looked right at him and grabbed the trach line! He told her to stop and she did. When I walked in, mom was watching TV---I said hi and asked how she was. She gave a happy, surprised look to see me and mouthed, “Good.” Then I asked her what she was doing and she mouthed, “Watching TV” but then she looked as if she had caught herself and stopped talking and looking at me. The CNAs came to put mom in bed then. Once she was in bed, she fell asleep; but before she did, she looked at me as we were talking and grabbed the trach line again. When mom woke up, she was smiling and refreshed. She watched “Everybody Loves Raymond” with dad and I and she laughed a lot as she watched the show. At one point, mom was trying to reach the container on the tray table and couldn’t so she grabbed my hand and moved it like an extension of herself to reach the container and move it where she wanted it! Later, she was moving dad’s hand up and down playfully and laughed. I threw one of the squeeze balls to mom and she tried to catch it. I told her to squeeze it and she did. Lenny called and I put the phone to her ear so he could talk to her. She smiled and raised her eyebrows and listened intently. She took one of her hearing aids out after she finished talking to him. Dad said that mom also talked to Anthony and Samantha on the phone today too. We called Angelo and Madeline (dad’s cousins) and they spoke to mom too. Mom smiled both times. When I asked who was on the phone, she mouthed, “Angelo” and when I asked if Madeline was on the phone, she mouthed, “Yeah.” I tried to do some writing with mom using the dry erase boards and the markers, but she was tired and fell asleep again.
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13
Anthony came next, and said that mom was sleeping first but he got her awake. He did her full physical therapy/range of motion and then they played with the pegboard and pegs. They laughed a lot and he said she mouthed a lot to him too. It wasn’t long before Anthony adapted the pegs to become a sword and then he and mom were sword-fighting!! She was laughing a lot and then Dad came and Anthony told her to get dad on his nose because it is the biggest part of him and she laughed and hit him on the nose!! Anthony also clucked his tongue and asked mom to do the same and she did several times. Then he asked her to stick out her tongue and she did that too a few times. Anthony said that, while he was there, one of the nurses (who usually doesn’t work with mom) came in to give mom her “medication” --- Anthony asked what “medication” that would be, and was told she was being given heprin again!! Dad and Anthony then spoke with the facility doctor and the doctor left the room and returned to say, “I took her off that, she won’t be having that anymore.” Maybe that was what was making her so tired? The head of respiratory and the pulmonologist came in to see mom and concurred that the vent would be lowered on Monday---the PSV portion. At one point, Anthony made believe he couldn’t spell the word ‘sword’ and he asked mom how to spell it and mom said, “Hmmm…ummm…s…o….r….I can’t remember” and Anthony said, “Don’t worry, I can’t spell it either!” Mom was the family grammar and spelling resource person…everyone in the family used to call her for correct spelling and grammar. Anthony said that mom also tried to reach for the remote for the TV too. He gave it to her and she tried to use it but couldn’t remember how. Dad said that mom got quiet when Anthony left. Dad said that mom cried last night when he and Claudia left.
We heard that mom’s CAT Scan of her sinuses and the barium swallow test are being done at 6:30 a.m. on Thursday, March 3.
Mom talked to the head respiratory therapist and the pulmonologist when they came in. She answered their questions. She shook their hands on command—when the pulmonologist asked her to shake his hand, she raised her hand and shook it!! Then she shook his hand. Dad said that, when he talked to mom and tried to get her to do things and talk, she looked right at him and grabbed the trach line! He told her to stop and she did. When I walked in, mom was watching TV---I said hi and asked how she was. She gave a happy, surprised look to see me and mouthed, “Good.” Then I asked her what she was doing and she mouthed, “Watching TV” but then she looked as if she had caught herself and stopped talking and looking at me. The CNAs came to put mom in bed then. Once she was in bed, she fell asleep; but before she did, she looked at me as we were talking and grabbed the trach line again. When mom woke up, she was smiling and refreshed. She watched “Everybody Loves Raymond” with dad and I and she laughed a lot as she watched the show. At one point, mom was trying to reach the container on the tray table and couldn’t so she grabbed my hand and moved it like an extension of herself to reach the container and move it where she wanted it! Later, she was moving dad’s hand up and down playfully and laughed. I threw one of the squeeze balls to mom and she tried to catch it. I told her to squeeze it and she did. Lenny called and I put the phone to her ear so he could talk to her. She smiled and raised her eyebrows and listened intently. She took one of her hearing aids out after she finished talking to him. Dad said that mom also talked to Anthony and Samantha on the phone today too. We called Angelo and Madeline (dad’s cousins) and they spoke to mom too. Mom smiled both times. When I asked who was on the phone, she mouthed, “Angelo” and when I asked if Madeline was on the phone, she mouthed, “Yeah.” I tried to do some writing with mom using the dry erase boards and the markers, but she was tired and fell asleep again.
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13
Friday, February 25, 2011
Mom Update, February 24, 2011, Thursday
Hi everyone,
I started the day with mom and she was very, very sleepy. I put her glasses on turn on the lights and opened the blinds, but she still kept sleeping. I cleaned her hearing aids and put them in, but she kept sleeping. I was told that her trach was changed today. It gets changed every 6 - 8 weeks. I did her PT (Range of Motion) but she still didn't wake up. I left and Dad and Aunt Sophie came to visit. Mom was sleepy for them also. She did wake periodically. Dad did PT with mom. Dad said that mom had a runny nose and told the nurses. Dad and I came back in the evening and I got mom to wake up. I brought Jean's movie "Just Like Joe" and we showed the staff mom's scene. She played a nun in one scene. The staff got a kick out of watching mom in the movie. One of the nurses went up and down the halls saying, "Hey I am taking care of a movie star!" It was pretty funny. Mom, dad and I watched the whole movie. Mom seemed to enjoy it. I took out the peg board and held out a peg and mom reached for it and took it in her hand. She even moved her hand toward the board, but I had to guide her wrist to a hole in the board. I didn't want to guide her hand because I was trying to fade out the assistance. She needed me to help push the peg in the hole. I also had to present her with a new peg for her to let go of the peg she placed in. She still is having difficulty letting go of items. If I present her with something she is more likely to let go of what she has and go for the item. We filled the peg board. I then held out the zip lock bag and prompted her to take out each peg and place it in the bag. I had to hold her wrist and help her pull out the peg. Occasionally she let go of the peg and I had to place her hand on the peg again. She eventually put back all of the pegs. I then gave her the scissors and held a paper. She did open and close the scissors and she cut a 2 inch line. She fell asleep while cutting so I put the scissors away. She woke up 5 minutes later and we finished watching the movie. After the movie dad and I put the food network on and tucked her in for the night. Dad held he hands and talked softly to her before he left.
Peace and love,
Claud
I started the day with mom and she was very, very sleepy. I put her glasses on turn on the lights and opened the blinds, but she still kept sleeping. I cleaned her hearing aids and put them in, but she kept sleeping. I was told that her trach was changed today. It gets changed every 6 - 8 weeks. I did her PT (Range of Motion) but she still didn't wake up. I left and Dad and Aunt Sophie came to visit. Mom was sleepy for them also. She did wake periodically. Dad did PT with mom. Dad said that mom had a runny nose and told the nurses. Dad and I came back in the evening and I got mom to wake up. I brought Jean's movie "Just Like Joe" and we showed the staff mom's scene. She played a nun in one scene. The staff got a kick out of watching mom in the movie. One of the nurses went up and down the halls saying, "Hey I am taking care of a movie star!" It was pretty funny. Mom, dad and I watched the whole movie. Mom seemed to enjoy it. I took out the peg board and held out a peg and mom reached for it and took it in her hand. She even moved her hand toward the board, but I had to guide her wrist to a hole in the board. I didn't want to guide her hand because I was trying to fade out the assistance. She needed me to help push the peg in the hole. I also had to present her with a new peg for her to let go of the peg she placed in. She still is having difficulty letting go of items. If I present her with something she is more likely to let go of what she has and go for the item. We filled the peg board. I then held out the zip lock bag and prompted her to take out each peg and place it in the bag. I had to hold her wrist and help her pull out the peg. Occasionally she let go of the peg and I had to place her hand on the peg again. She eventually put back all of the pegs. I then gave her the scissors and held a paper. She did open and close the scissors and she cut a 2 inch line. She fell asleep while cutting so I put the scissors away. She woke up 5 minutes later and we finished watching the movie. After the movie dad and I put the food network on and tucked her in for the night. Dad held he hands and talked softly to her before he left.
Peace and love,
Claud
Wednesday, February 23, 2011
Mom Update, February 23, 2011, Wednesday
Lenny began the day with his “Nonny” this morning. He said she was sound asleep so he woke her and put her glasses on and hearing aids in. He did her full physical therapy/range of motion exercises and she remained awake but very quiet. He said she wouldn’t talk to him at all. When he finished, he asked her if she wanted to read or watch TV because he had homework to do. She wouldn’t answer but was looking at the TV so he put the TV on and sat by her side doing his homework. He said that, when he looked up at her, she was out like a light again and stayed that way until he left.
Anthony and Samantha came to see mom next. Sammy wrote that mom was in the shower when they arrived. Sam told mom to stick out her tongue (part of her speech exercises) and mom did it. Sammy wrote that mom said a few words but they couldn’t understand what she was saying. Anthony and dad bought a leprechaun hat with an attached beard over the weekend. Dad put it on last night when we were here and mom laughed. Anthony and Sam took it out again and after a while, mom said, “Leprechaun.” Anthony worked on her legs and mom moved her feet a lot. She told Anthony that her left leg is harder to lift so they told her, “We have to work harder and you will get it. We will all help you.” Sammy wrote that Anthony told her not to get discouraged and to believe in herself. Mom fell asleep then woke up and Sam read to her. Mom fell asleep again.
Dad came next to see mom. He said that the speech therapist came to see her and gave her a cup of cranberry juice and pears and peaches and ate them like there was no tomorrow! She talked to dad. Dad asked her if the pears tasted good and mom mouthed, “Yeah” and shook her head. The respiratory people came in and took her oxygen levels and said they were great. Dad tried to play with the buttons and the container but he said mom only picked some of the buttons up but wouldn’t put them into the container. He tried to work with her legs again but mom was very tired and wasn’t concentrating. She fell asleep.
When I arrived to see mom, she was asleep. Dad said she had just fallen asleep. The CNA came to put mom to bed and when we came back in the room, she was awake. Dad and I did her full physical therapy/range of motion exercises. Then we put each of mom’s legs on the 10 inch ball and had her try to lift her leg while chanting, “Lift my leg” over and over. She moved her feet a lot and her ankles as well on both sides but didn’t manage to lift her legs. She was concentrating very hard because you could see it on her face---she scrunched up her face and turned red as she tried to concentrate on moving her legs. Then dad and I talked to mom and told her again what happened to her and how good she is doing now. We also told her to keep trying to work hard because it would help her come home. I tried to work on the IPAD with mom next, but that didn’t work well. She wouldn’t try to imitate the oral motor exercises. I left for work and dad and mom watched TV.
Con, Anthony Michael, and Aunt Sophie joined dad visiting mom after dinner. Con said that mom had that squinty-eyed, painful looking face again so they asked the nurse to see her. She was given Tylenol and seemed better shortly after that. Con said that, after much asking and prodding, mom finally mouthed, "Yes" to the question, "Does your stomach hurt?" She fell asleep shortly after that. Mom's 3-11 CNA said that mom has been sleeping at night or at least until 11:00 p.m. these last few days. The infection (UTI) she had really set her back again....
"Who of you by worrying can add a single hour to his life?" Matthew 6:27
Anthony and Samantha came to see mom next. Sammy wrote that mom was in the shower when they arrived. Sam told mom to stick out her tongue (part of her speech exercises) and mom did it. Sammy wrote that mom said a few words but they couldn’t understand what she was saying. Anthony and dad bought a leprechaun hat with an attached beard over the weekend. Dad put it on last night when we were here and mom laughed. Anthony and Sam took it out again and after a while, mom said, “Leprechaun.” Anthony worked on her legs and mom moved her feet a lot. She told Anthony that her left leg is harder to lift so they told her, “We have to work harder and you will get it. We will all help you.” Sammy wrote that Anthony told her not to get discouraged and to believe in herself. Mom fell asleep then woke up and Sam read to her. Mom fell asleep again.
Dad came next to see mom. He said that the speech therapist came to see her and gave her a cup of cranberry juice and pears and peaches and ate them like there was no tomorrow! She talked to dad. Dad asked her if the pears tasted good and mom mouthed, “Yeah” and shook her head. The respiratory people came in and took her oxygen levels and said they were great. Dad tried to play with the buttons and the container but he said mom only picked some of the buttons up but wouldn’t put them into the container. He tried to work with her legs again but mom was very tired and wasn’t concentrating. She fell asleep.
When I arrived to see mom, she was asleep. Dad said she had just fallen asleep. The CNA came to put mom to bed and when we came back in the room, she was awake. Dad and I did her full physical therapy/range of motion exercises. Then we put each of mom’s legs on the 10 inch ball and had her try to lift her leg while chanting, “Lift my leg” over and over. She moved her feet a lot and her ankles as well on both sides but didn’t manage to lift her legs. She was concentrating very hard because you could see it on her face---she scrunched up her face and turned red as she tried to concentrate on moving her legs. Then dad and I talked to mom and told her again what happened to her and how good she is doing now. We also told her to keep trying to work hard because it would help her come home. I tried to work on the IPAD with mom next, but that didn’t work well. She wouldn’t try to imitate the oral motor exercises. I left for work and dad and mom watched TV.
Con, Anthony Michael, and Aunt Sophie joined dad visiting mom after dinner. Con said that mom had that squinty-eyed, painful looking face again so they asked the nurse to see her. She was given Tylenol and seemed better shortly after that. Con said that, after much asking and prodding, mom finally mouthed, "Yes" to the question, "Does your stomach hurt?" She fell asleep shortly after that. Mom's 3-11 CNA said that mom has been sleeping at night or at least until 11:00 p.m. these last few days. The infection (UTI) she had really set her back again....
"Who of you by worrying can add a single hour to his life?" Matthew 6:27
Tuesday, February 22, 2011
Mom Update, February 22, 2011, Tuesday
I started mom's day this morning and she was out like a light. No matter what I did, even when I opened her eyelids, she didn't wake up. I did her full physical therapy/range of motion exercises. I sat with her even though she was sleeping until she was washed and dressed and in her wheelchair. Once she was in her chair, she appeared awake but, by that time, I had to leave.
Claudia came next to see mom and mom was asleep. She woke mom up. The speech therapist walked in with bananas and apple juice but mom had just woken up so mom wasn't opening her mouth too well at first. The therapist gave mom the banana on a spoon, but mom wouldn't open her mouth. When the therapist gave mom the juice in the cup, mom took the cup and helped to hold it to drink out of it. The therapist gave mom a piece of the banana without the spoon and gave mom more and more and mom ate it gradually. Claudia told the therapist about mom's constipation from the bananas and the therapist said that mom would be eating fruit cocktail soon because it has more variety and is soft. Claudia did the IPAD with mom next and they played a few word games and then mom watched some of the "Electric Company" then the CNAs came to put mom to bed and wash her up.
Dad, Aunt Sophie, and I saw mom next. I did mom's full physical therapy/range of motion and then I tried to put the 10 inch ball under mom's knees (one at a time) to see if she could lift her leg at all. She lifted her right leg 3 times!! Her right leg/foot left the bed by about an inch each time. She lifted the left leg once (same height). She was also able to move her feet when we asked her to move her legs and she wiggled her toes on command too but with a delayed reaction time. She looked like she was really concentrating through all this---her face got serious and turned red a few times. Dad and I kept telling her to chant, "Lift my leg up" over and over. We chanted it too and we also cheered her on as well. When this was over, I tried to do the IPAD with her but she wouldn't do it. She put 2 buttons in the container slot hand over hand and picked up 2 pom poms using hand over hand prompting as well. She fell asleep after that and could not be wakened. We 3 stayed until the early night and then tucked her in and prayed with her.
"...pay attention to what I say; turn your ear to my words. Do not let them out of your sight,
keep them within your heart; for they are life to those who find them and health to one’s whole body." Proverbs 4:20-22
Claudia came next to see mom and mom was asleep. She woke mom up. The speech therapist walked in with bananas and apple juice but mom had just woken up so mom wasn't opening her mouth too well at first. The therapist gave mom the banana on a spoon, but mom wouldn't open her mouth. When the therapist gave mom the juice in the cup, mom took the cup and helped to hold it to drink out of it. The therapist gave mom a piece of the banana without the spoon and gave mom more and more and mom ate it gradually. Claudia told the therapist about mom's constipation from the bananas and the therapist said that mom would be eating fruit cocktail soon because it has more variety and is soft. Claudia did the IPAD with mom next and they played a few word games and then mom watched some of the "Electric Company" then the CNAs came to put mom to bed and wash her up.
Dad, Aunt Sophie, and I saw mom next. I did mom's full physical therapy/range of motion and then I tried to put the 10 inch ball under mom's knees (one at a time) to see if she could lift her leg at all. She lifted her right leg 3 times!! Her right leg/foot left the bed by about an inch each time. She lifted the left leg once (same height). She was also able to move her feet when we asked her to move her legs and she wiggled her toes on command too but with a delayed reaction time. She looked like she was really concentrating through all this---her face got serious and turned red a few times. Dad and I kept telling her to chant, "Lift my leg up" over and over. We chanted it too and we also cheered her on as well. When this was over, I tried to do the IPAD with her but she wouldn't do it. She put 2 buttons in the container slot hand over hand and picked up 2 pom poms using hand over hand prompting as well. She fell asleep after that and could not be wakened. We 3 stayed until the early night and then tucked her in and prayed with her.
"...pay attention to what I say; turn your ear to my words. Do not let them out of your sight,
keep them within your heart; for they are life to those who find them and health to one’s whole body." Proverbs 4:20-22
Mom Update, February 20, 2011, Sunday
8:50am Anthony and I started this morning by washing mom's face, put her
glassess on and her hearing aides in. She was sound asleep. We noticed
while she was sleeping she was moving her legs alot. At about 10:00am
Mom was put in the chair, still sleeping. 11:15 the nurse came in and
cleaned her trach but she stayed asleep. Anthony did full PT and again
still asleep. Dad came around 12:30 with Samantha. We mentioned to Dad
that Mom was sleeping the entire morning and and he called the nurse in
and the nurse checked on her pupils and they were normal and reactive.
Which was good. The cna came in a little while later and changed mom....
again still sleeping.....At around 2:10 she woke up and we started
talking but she was not really responsive just very sleepy. Anthony
again did full PT on her. Terry came in around 2:30... I worked with
here with the orange tube and she was up for about 45 minutes and then
her eyes became heavy at times. Anthony and I left around 3:30... Terry
told us that they put mom back in bed around 4:30. When Terry left
around 6:00 she mentioned that mom was awake for a little bit. Dad
called around 7:00 . He did full PT on her. She was sound asleep. He
took her glassess off and also her hearing aids tuck her in and kiss her
good night.
Con
glassess on and her hearing aides in. She was sound asleep. We noticed
while she was sleeping she was moving her legs alot. At about 10:00am
Mom was put in the chair, still sleeping. 11:15 the nurse came in and
cleaned her trach but she stayed asleep. Anthony did full PT and again
still asleep. Dad came around 12:30 with Samantha. We mentioned to Dad
that Mom was sleeping the entire morning and and he called the nurse in
and the nurse checked on her pupils and they were normal and reactive.
Which was good. The cna came in a little while later and changed mom....
again still sleeping.....At around 2:10 she woke up and we started
talking but she was not really responsive just very sleepy. Anthony
again did full PT on her. Terry came in around 2:30... I worked with
here with the orange tube and she was up for about 45 minutes and then
her eyes became heavy at times. Anthony and I left around 3:30... Terry
told us that they put mom back in bed around 4:30. When Terry left
around 6:00 she mentioned that mom was awake for a little bit. Dad
called around 7:00 . He did full PT on her. She was sound asleep. He
took her glassess off and also her hearing aids tuck her in and kiss her
good night.
Con
Mom Update, February 19, 2011 Saturday
Claudia, Kathy and Lenny went upstate this weekend. When Anthony, myself, Anthony Michael and Samantha came in to see Mom Dad was with her. He put her hearing aids in and glasses on...Dad did her PT on her arms. This was around 10:00. Mom was still in bed. Her CNA mentioned that they were washing the items before they would give her a shower. Anthony did PT on her legs. Dad left for a little while. My family and I were hanging out with Mom and we talked, looked at pictures and sang some silly songs. She was in a good mood and laughing alot. Did not say much.Dad came back around 12:15. Mom was on her way to the shower. So we ALL went to Target, Dad brought Mom's body soap. When we returned Mom was in her chair looking refreshed and comtfortable but sleep. So we ALl sat around her and were talking.. She feel alseep... About 1:15 Uncle Mike and Aunt Pat came to visit Mom... Uncle Mike is Mom's brother. My family and I had to leave to. Dad told me that Mom held Uncle Mike's hand and smiled and talked to me. The speech therapist came in around 2:45 and gave Mom a full 8oz glass of water and drank it with no problem. She was fed all day instead of night. Uncle Mike left around 3:15... Dad was with her until around 7:00 and Mom was fell alseep.
Mom Update, February 21, 2011, Monday
Dad set up Mom this morning. Dad got there around 8:15 this morning. He
put her glassess on and hearing aides in. Dad mentioned that Mom was
awake, and in a good mood. Dad had to leave early because of a doctor's
appointment. Anthony and I came around 11:00. Mom was sitting in the
chair. She was wearing a "blue sweatsuit". She looked so good. She was
also awake and in a good mood. We were so happy to see her this
way...better that yesterday...Yesterday was a sleepy day for her.
Anthony and I talked to Mom and gave her an update on her grandchildern
(Anthony and Samantha)... She listened to us. Anthony did full PT on
her. She held the orange tube in her "left" hand and pulled in 2 x's.
She looked at the " All about me book". Also gave her a piece of paper
and scissors to cut, she did it once ( a very samll cut). Anthony also
did some legs lifts on her. Dad came back around 12:40. Dad, Anthony & I
were talking and we gave mom the container with the buttons. She took 1
buttoon and placed in on top. At about 1:45 Anthony and I did her full
PT.... We all watched some TV and about 2:20 she fell alseep. Anthony
and I left. Dad mentioned that mom woke up and the speech therapist came in Mom drank a whole glass of apple juice. Dad said she enjoyed it. She kept on licking her lips. LOL LOL Mom and Dad were watching "Seinfeld"... At one point the cast was doing something funny and mom starting laughing.
Dad tucked mom in for the night and kissed her.... Dad said when he was
leaving Mom seemed sad.....
Con
put her glassess on and hearing aides in. Dad mentioned that Mom was
awake, and in a good mood. Dad had to leave early because of a doctor's
appointment. Anthony and I came around 11:00. Mom was sitting in the
chair. She was wearing a "blue sweatsuit". She looked so good. She was
also awake and in a good mood. We were so happy to see her this
way...better that yesterday...Yesterday was a sleepy day for her.
Anthony and I talked to Mom and gave her an update on her grandchildern
(Anthony and Samantha)... She listened to us. Anthony did full PT on
her. She held the orange tube in her "left" hand and pulled in 2 x's.
She looked at the " All about me book". Also gave her a piece of paper
and scissors to cut, she did it once ( a very samll cut). Anthony also
did some legs lifts on her. Dad came back around 12:40. Dad, Anthony & I
were talking and we gave mom the container with the buttons. She took 1
buttoon and placed in on top. At about 1:45 Anthony and I did her full
PT.... We all watched some TV and about 2:20 she fell alseep. Anthony
and I left. Dad mentioned that mom woke up and the speech therapist came in Mom drank a whole glass of apple juice. Dad said she enjoyed it. She kept on licking her lips. LOL LOL Mom and Dad were watching "Seinfeld"... At one point the cast was doing something funny and mom starting laughing.
Dad tucked mom in for the night and kissed her.... Dad said when he was
leaving Mom seemed sad.....
Con
Friday, February 18, 2011
Mom Update, February 18, 2011, Friday
Claudia began the day with mom this morning. She wrote that mom was bright eyed and alert and talking alot when she arrived. She did mom's physical therapy/range of motion exercises. Claudia showed mom the family photos but mom couldn’t name anyone and kept saying, "I don't know." She also tried to put mom’s legs on the 10 inch ball—alternately---to do leg lifts, and though mom couldn't lift her legs, she did move her right foot as if she knew something was supposed to happen with that foot/leg. It was as if she understood what she had to do. Her left hand was pliable and loose. When Claudia said she was leaving, mom said, "NO" and Claudia told her, "Sorry mom, I have to get to work." Claudia also had to move mom in the bed with the help of 2 men who work there because mom was all tilted over to the side in the bed (maybe she is moving around alot again).
Claudia also talked to the head of respiratory who is maintaining that he feels mom has Central Sleep Apnea and not obstructive sleep apnea. The difference between the 2 is that CSA involves damage to the part of the brain that tells a person to breathe. This doesn’t make sense though because the occurrence only happens at night. He said that mom is improving with the episodes of apnea at night. He studied her charts (hmmm….coincidently the day after Claudia and I went to the Building Administrator….hmmm)…anyway, after reviewing her charts, he determined that mom is, indeed, showing significant progress with the apnea at night and is, in fact, down to only 1 episode a night. The head of respiratory feels and believes that, although he thinks mom has CSA, her brain is mending in a way that is compensating for the inability to maintain breathing at night. He is not sure if mom’s brain will stay this way (therefore requiring her to stay on a vent at night forever) or if mom’s brain will mend fully (meaning that she will get off the vent forever). PRAY SHE GETS OFF THIS VENT!!!! PLEASE!! Thanks. Anyway, I am wondering how mom would have been off the vent totally for a full week (back in December) but NOW went backwards to having CSA????? CSA is not, to my knowledge, something that just happens out of nowhere or as part of old age….but who knows? I didn’t look it up yet in that context. As far as I know, CSA happens as a result of brain damage. So if mom was off the vent for a week in December, I don’t think she has CSA. I think that she has OSA (Obstructive sleep apnea)—which is what mom always had (due to her weight and other things like blood pressure…) which is what mom’s neurologist thinks as well. Ultimately, God is in control---so let’s just collectively beckon Him on mom’s behalf again! Mom's roommate is not doing well...she could use some prayer. She is old and very ill. I had the opportunity to pray with her again today.
Some newcomers to the blog have asked about our communication system regarding mom’s state of alertness…here’s what we do. When mom was in a coma, we had developed 2 charts. One chart, recorded mom’s motions (whether she opened her eyes, moved a limb…) and how long the motions lasted. We logged this information in order to see the subtle but steady progress mom was making. We no longer have need for this chart now. PTL. The other chart records mom’s state of alertness (1=awake, 2=asleep, 3=totally out of it no waking her up). On this same chart, we record the time of day, who is with mom (which family member or friend), and what activities we did with mom (so that we don’t repeat activities, other than range of motion exercises). Sometimes, we even write mom’s care on there by staff.
Ok, so when I arrived to be with mom around 10:30 a.m., she was asleep. I said hello and talked to her, but her eyes remained closed. I opened her lids but she was asleep (when she is faking or confused, when you open her lids, her eyes look right at you---when she is asleep, her eyes roll back in her head). I waited and let her sleep and prepared to work with her. One of the things I did then was to put some cinnamon oil on the lightbulb above her bed (said to make a person more alert), and I also put some frankincense on her temples (said to give mental clarity). About 15 minutes later, I tried to wake her again and she was awake. She answered, “Good” when I asked how she was. She mouthed a few phrases too. Then mom’s nurse came to do trach care and she remained awake through it all. When that was finished, I tried to do the Mega Blocks with mom (huge, oversized Legos) but mom fell asleep again. I woke her and put the IPAD on along with the headphones---a book on tape, “Testimony,” the closest thing to a mystery that I had on there. I figured it might wake mom up too. It didn’t. Or at least, she didn’t open her eyes---she squinted them a lot though. I tried writing on the dry erase board with mom next…no luck there either. Mom had no interest and fell back to sleep again. Mom’s friend, Florence, came to see her today too. Mom slept through almost all of the visit. Just as Florence was leaving, mom woke up. I tried to do some pegs and pegboard with her, but she needed hand over hand assistance to put 2 in the board and she couldn’t pull either of them out either. Her motivation was really low today. I put some “Electric Company” shows on the IPAD with the headphones and let mom listen and watch for a while. She fell asleep shortly after it started. Dad arrived around 4 p.m. and mom smirked and smiled and woke up when he said hello! Her evening CNA said that mom is up all night and that, last night when she came in, mom was awake and asked her, “Hey, what time is it?” The CNA said that mom was missing us and looking forward to seeing us. I spoke to the nutritionist and asked about having mom’s feeding (liquid…through the G-Tube) take place during the day and not at night. Right now, mom’s feeding takes 12 hours on and off throughout the night. It is a high protein solution so we are thinking that it is keeping her up at night possibly. The nutritionist said that mom has lost 30 lbs. since she is here and needs to lose more weight so she wants to cut some of mom’s feeding back (which I approved) and the nutritionist also said that mom’s feeding time switch will occur effective tomorrow. She will get ½ her feeding tonight and then the switch will be made as of tomorrow morning. Shortly after dad arrived, mom was put to bed and changed and fell asleep again. Dad and I left to get some dinner and when we returned, mom's eyes were squinty shut---I lifted the lids and she stared at us. I had noticed earlier in the day that mom's left eye was puffy near the nose at the top of the eyelid and a little black and blue looking so I asked the night nurse to look at it for us. He said that it was probably an edema in the lid from leaning to the side so much. Could be. He said they'd watch it. I left and dad put mom to bed. Con will be doing the blog over the weekend (Saturday, Sunday, and Monday) because Claudia, Lenny and I are going upstate for a long weekend.
"We know that we have passed from death to life, because we love one another." 1 John 3:14
Claudia also talked to the head of respiratory who is maintaining that he feels mom has Central Sleep Apnea and not obstructive sleep apnea. The difference between the 2 is that CSA involves damage to the part of the brain that tells a person to breathe. This doesn’t make sense though because the occurrence only happens at night. He said that mom is improving with the episodes of apnea at night. He studied her charts (hmmm….coincidently the day after Claudia and I went to the Building Administrator….hmmm)…anyway, after reviewing her charts, he determined that mom is, indeed, showing significant progress with the apnea at night and is, in fact, down to only 1 episode a night. The head of respiratory feels and believes that, although he thinks mom has CSA, her brain is mending in a way that is compensating for the inability to maintain breathing at night. He is not sure if mom’s brain will stay this way (therefore requiring her to stay on a vent at night forever) or if mom’s brain will mend fully (meaning that she will get off the vent forever). PRAY SHE GETS OFF THIS VENT!!!! PLEASE!! Thanks. Anyway, I am wondering how mom would have been off the vent totally for a full week (back in December) but NOW went backwards to having CSA????? CSA is not, to my knowledge, something that just happens out of nowhere or as part of old age….but who knows? I didn’t look it up yet in that context. As far as I know, CSA happens as a result of brain damage. So if mom was off the vent for a week in December, I don’t think she has CSA. I think that she has OSA (Obstructive sleep apnea)—which is what mom always had (due to her weight and other things like blood pressure…) which is what mom’s neurologist thinks as well. Ultimately, God is in control---so let’s just collectively beckon Him on mom’s behalf again! Mom's roommate is not doing well...she could use some prayer. She is old and very ill. I had the opportunity to pray with her again today.
Some newcomers to the blog have asked about our communication system regarding mom’s state of alertness…here’s what we do. When mom was in a coma, we had developed 2 charts. One chart, recorded mom’s motions (whether she opened her eyes, moved a limb…) and how long the motions lasted. We logged this information in order to see the subtle but steady progress mom was making. We no longer have need for this chart now. PTL. The other chart records mom’s state of alertness (1=awake, 2=asleep, 3=totally out of it no waking her up). On this same chart, we record the time of day, who is with mom (which family member or friend), and what activities we did with mom (so that we don’t repeat activities, other than range of motion exercises). Sometimes, we even write mom’s care on there by staff.
Ok, so when I arrived to be with mom around 10:30 a.m., she was asleep. I said hello and talked to her, but her eyes remained closed. I opened her lids but she was asleep (when she is faking or confused, when you open her lids, her eyes look right at you---when she is asleep, her eyes roll back in her head). I waited and let her sleep and prepared to work with her. One of the things I did then was to put some cinnamon oil on the lightbulb above her bed (said to make a person more alert), and I also put some frankincense on her temples (said to give mental clarity). About 15 minutes later, I tried to wake her again and she was awake. She answered, “Good” when I asked how she was. She mouthed a few phrases too. Then mom’s nurse came to do trach care and she remained awake through it all. When that was finished, I tried to do the Mega Blocks with mom (huge, oversized Legos) but mom fell asleep again. I woke her and put the IPAD on along with the headphones---a book on tape, “Testimony,” the closest thing to a mystery that I had on there. I figured it might wake mom up too. It didn’t. Or at least, she didn’t open her eyes---she squinted them a lot though. I tried writing on the dry erase board with mom next…no luck there either. Mom had no interest and fell back to sleep again. Mom’s friend, Florence, came to see her today too. Mom slept through almost all of the visit. Just as Florence was leaving, mom woke up. I tried to do some pegs and pegboard with her, but she needed hand over hand assistance to put 2 in the board and she couldn’t pull either of them out either. Her motivation was really low today. I put some “Electric Company” shows on the IPAD with the headphones and let mom listen and watch for a while. She fell asleep shortly after it started. Dad arrived around 4 p.m. and mom smirked and smiled and woke up when he said hello! Her evening CNA said that mom is up all night and that, last night when she came in, mom was awake and asked her, “Hey, what time is it?” The CNA said that mom was missing us and looking forward to seeing us. I spoke to the nutritionist and asked about having mom’s feeding (liquid…through the G-Tube) take place during the day and not at night. Right now, mom’s feeding takes 12 hours on and off throughout the night. It is a high protein solution so we are thinking that it is keeping her up at night possibly. The nutritionist said that mom has lost 30 lbs. since she is here and needs to lose more weight so she wants to cut some of mom’s feeding back (which I approved) and the nutritionist also said that mom’s feeding time switch will occur effective tomorrow. She will get ½ her feeding tonight and then the switch will be made as of tomorrow morning. Shortly after dad arrived, mom was put to bed and changed and fell asleep again. Dad and I left to get some dinner and when we returned, mom's eyes were squinty shut---I lifted the lids and she stared at us. I had noticed earlier in the day that mom's left eye was puffy near the nose at the top of the eyelid and a little black and blue looking so I asked the night nurse to look at it for us. He said that it was probably an edema in the lid from leaning to the side so much. Could be. He said they'd watch it. I left and dad put mom to bed. Con will be doing the blog over the weekend (Saturday, Sunday, and Monday) because Claudia, Lenny and I are going upstate for a long weekend.
"We know that we have passed from death to life, because we love one another." 1 John 3:14
Thursday, February 17, 2011
Mom Update, February 17, 2011, Thursday
What a day today was.
Claudia began the day in the usual, uneventful fashion...mom was sleepy and Claudia did her physical therapy/range of motion exercises.
Around 12:30, I received a frantic call from Claudia who received a call from dad saying that mom wasn't doing well...had a fever...not responsive... I had to run a meeting but left promptly and met at the facility.
When I arrived, mom seemed alert and responsive. PTL Dad said she was doing better. When dad arrived around 11 to see mom today, he found her in her chair with no mitts on her hands---one hand was holding on tight to her G-tube and the trach line that is used for suctioning was wrapped around/through the double tied trach collar and mom was tilted to that side and out of it. Dad couldn't wake her for anything! He called for help and sometime after that, mom was awake again. Anthony arrived shortly after I did. Anthony said that yesterday mom was given a shower by her new CNA with her hearing aids in again!!! The day before that mom was put in her chair without shoes on her feet or circulation stockings on her legs.... Claudia and I went to the Building Administrator and met with him to voice our concerns. He answered and responded as we hoped he would but then why does this happen over and over???? He said that he explained to the staff that they never earned our trust or respect based on their actions and lack of care for mom. He said the staff didn't agree. He left us and went to call an emergency team meeting. He found everyone involved and met with them all for about an hour, then he came back to look for us. I stayed behind while Claudia went to work. By now, Lenny had also joined us with mom. He and Anthony had mom laughing as they joked with her. Dad and I met with the team for 2 hours....grueling. Supposedly, everything will be taken care of now (hmmmm.....where have we heard that before?). We also were able to get mom's old CNA back again (she now gives me hugs and kisses hello---she is like family). It appears though that the best nurse who we love was blamed for the situation today....it's always something with these people. I stuck up for the nurse but they insisted it was the nurse's mistake. This nurse is so dedicated and diligent that we found it hard to believe it was true. The nurse apologized to us and I even began to cry at one point. What a creepy, rotten system this is. The main point: Mom is OK. PTL. It's been a long day.....
"It is only the Lord's mercies that have kept us from complete destruction...." Lamentations 3:22
Claudia began the day in the usual, uneventful fashion...mom was sleepy and Claudia did her physical therapy/range of motion exercises.
Around 12:30, I received a frantic call from Claudia who received a call from dad saying that mom wasn't doing well...had a fever...not responsive... I had to run a meeting but left promptly and met at the facility.
When I arrived, mom seemed alert and responsive. PTL Dad said she was doing better. When dad arrived around 11 to see mom today, he found her in her chair with no mitts on her hands---one hand was holding on tight to her G-tube and the trach line that is used for suctioning was wrapped around/through the double tied trach collar and mom was tilted to that side and out of it. Dad couldn't wake her for anything! He called for help and sometime after that, mom was awake again. Anthony arrived shortly after I did. Anthony said that yesterday mom was given a shower by her new CNA with her hearing aids in again!!! The day before that mom was put in her chair without shoes on her feet or circulation stockings on her legs.... Claudia and I went to the Building Administrator and met with him to voice our concerns. He answered and responded as we hoped he would but then why does this happen over and over???? He said that he explained to the staff that they never earned our trust or respect based on their actions and lack of care for mom. He said the staff didn't agree. He left us and went to call an emergency team meeting. He found everyone involved and met with them all for about an hour, then he came back to look for us. I stayed behind while Claudia went to work. By now, Lenny had also joined us with mom. He and Anthony had mom laughing as they joked with her. Dad and I met with the team for 2 hours....grueling. Supposedly, everything will be taken care of now (hmmmm.....where have we heard that before?). We also were able to get mom's old CNA back again (she now gives me hugs and kisses hello---she is like family). It appears though that the best nurse who we love was blamed for the situation today....it's always something with these people. I stuck up for the nurse but they insisted it was the nurse's mistake. This nurse is so dedicated and diligent that we found it hard to believe it was true. The nurse apologized to us and I even began to cry at one point. What a creepy, rotten system this is. The main point: Mom is OK. PTL. It's been a long day.....
"It is only the Lord's mercies that have kept us from complete destruction...." Lamentations 3:22
Wednesday, February 16, 2011
Mom Update, February 16, 2011, Wednesday
Claudia began the day with mom and found her sound asleep so she did her physical therapy/ range of motion exercises. She worked mom's left hand really well and put mom's hand over her (Claudia's) hand and then moved mom's hand by moving her own. She stretched mom really well too. She washed her face, put her hearing aids in.... Claudia worked mom's limbs really well too today. She began to straighten the room and when she turned around, guess who was awake?!! Mom's eyes were wide open!! Claudia also worked with mom using the orange scrunchy tube pulling and pushing mom's arms. Mom tried hard to pull back against Claudia. Mom had a lot of concentration and was very intent on pulling her arm away from Claudia but couldn't figure it out so instead of pulling the tube using her arm, mom turned her wrist to do it. Her ingenuity is amazing sometimes. Claudia had to leave by then though. She set up a magazine article on the lap desk for mom to read. It bothered Claudia greatly that mom's hands are mitted and she can't move them on her own. Claudia found out that the CNA we love, during the day, is gone!! They switched her somewhere else. Contrary to popular opinion, it isn't a good thing to rotate the people who work with mom, because they largely don't work well without direction...and it took us so long to train this one.
Anthony saw mom next. Mom was sleeping when he got there and when she woke up, he did her physical therapy/range of motion exercises. They talked and just "chilled." It appeared that mom had eaten a cup of applesauce because there was a container from applesauce with a tiny bit left in it but he didn't see mom eat it.
Dad came next and mom's friend, Maureen. Dad said that mom was awake this afternoon and that mom had a shower this morning and a haircut and set. Mom was alert and mouthed answers to their questions and spoke in short phrases (mouthed the words). At 5:00 p.m., mom was put into bed and fell asleep and remained asleep until 7 p.m. when dad left.
"I will instruct you and teach you in the way you should go; I will counsel you and watch over you." Psalm 32:8
Anthony saw mom next. Mom was sleeping when he got there and when she woke up, he did her physical therapy/range of motion exercises. They talked and just "chilled." It appeared that mom had eaten a cup of applesauce because there was a container from applesauce with a tiny bit left in it but he didn't see mom eat it.
Dad came next and mom's friend, Maureen. Dad said that mom was awake this afternoon and that mom had a shower this morning and a haircut and set. Mom was alert and mouthed answers to their questions and spoke in short phrases (mouthed the words). At 5:00 p.m., mom was put into bed and fell asleep and remained asleep until 7 p.m. when dad left.
"I will instruct you and teach you in the way you should go; I will counsel you and watch over you." Psalm 32:8
Tuesday, February 15, 2011
Mom Update, February 15, 2011, Tuesday
Ava began the day with mom this morning. She said that mom was already in her wheelchair even though it was very early in the morning, and mom was fast asleep. Ava said mom was doing the “squinty” eye thing she does but wouldn’t open her eyes for Ava at all. She did mom’s full physical therapy/range of motion exercises but mom didn’t wake up or open her eyes. Ava also said that mom seems to have been assigned a new CNA for the day shift!!! Oh no!! Here we go again with reteaching someone how to do the bare minimum the facility does already. We loved mom’s other day shift CNA. I am hoping it was just a change for today…
Anthony came next to see mom. He said she was sound asleep the first 45 minutes he was there and he couldn’t wake her. He did her physical therapy/range of motion exercises again anyway while she slept. He said that when she woke up, she was very, very drowsy so they just talked and watched TV. Dad joined Anthony and Dad said he did mom’s exercises again in the mid-afternoon. He said she slept a lot. He also said that he talked to the head of respiratory today and asked when mom would get back to a trach collar but the respiratory person just maintained that, though mom is definitely progressing, she still has times at night or when sleeping when she isn’t breathing over the vent…. I say she needs more MOTION!! The physical motion stimulates her brain…at least from what I have seen. Dad also talked to a nurse about the possibility that mom doesn’t get fed (still through the G-Tube) at, and throughout, the night. The nurse agreed that the high protein formula mom is getting shouldn’t be given at night and would seem to prohibit and interfere with sleeping. The nurse said that the food is given at night so that feeding doesn’t interfere with the day’s activities. We need to look into this. Dad also read about optogenetics in his Popular Mechanics magazine and shared the theory with the head of respiratory, who was intrigued and surprised to hear of such a treatment option.
When I saw mom, later in the afternoon today, she was awake but definitely not talkative and seemingly stubborn or “in a mood.” She has been this way with me for days now. Today was comical and definitely “vintage mom” though. I began a conversation with her when I arrived, asking her who came to see her today and whether she ate anything today etc. At one point, dad had told me he brought mom a new magazine today, so I asked her, “Mom, did dad bring you a new magazine today?” To which she replied, “No.” So I replied, “Yes, he did, silly, it’s right here. Look.” To which mom replied, “Then why did you ask me?” I cracked up!!! She gave me the correct coinciding look of disgust and everything!!! Too funny!!!
John came to see mom this evening. He said that mom was out of sorts. She was awake when he arrived but she didn't really interact with him at all. He tried talking to her but she didn't respond. He said that she knew who he was and appeared to be happy to see him at first but then went into a mood that looked like she was maybe depressed or annoyed or angry...or disgusted. He and Dad thought she looked like she was in pain most of the time so they called the nurse and the nurse gave her tylenol. He tried to do her physical therapy but had to stop working her hands because she winced so much and said, "Ow" alot. He tried to do the sewing card but she took it and put it down over and over so he said, "OK we don't have to do this." Dad called the respiratory therapist to change her trach tubes and filter and she appeared better. John was also concerned because she did alot of shaking of her hands and arms. This could be a good thing though so we need to have the physical therapist assess this for us. i am wondering about the food she is eating. When you think that she hasn't eaten by mouth in 8 months, maybe the food she is trying is too harsh and the process/content of what she is eating is making her uncomfortable in her stomach and intestines.
In class, I was watching a video with my students about a child with autism and the speaker was talking about the importance of having a right attitude and hope. And he said 2 things that spoke to me, “Looking at where a person is functioning today tells me nothing about where that person can be tomorrow” and “How can I kiss the ground that others curse?” All could think was, “Wow.” This applies so much to mom and helps to put things in perspective, once again, for me. The first statement speaks for itself. The second one is intriguing. It makes me think way back to almost the beginning of when this happened to mom, and how I tried to look at mom and my relationship with her through a different lens. How life is such a mystery. How the things that happen to us during a lifetime are a mystery. I guess that, when I thought about that comment of kissing the ground that others curse in reference to mom today, it made me remember that mom is still mom at her core. She is still there. She is just in a different state of being…and I remember that there are times when I am with mom now and it’s OK. There is still closeness there. There is still love there. It’s just different. And I remembered what I used to say way back when…if I can shift the lens, from me and my needs, to her and her needs…then this is such a wonderful opportunity to give to her. To love on her. To give back to her for all she has given to me. Not everyone has the chance to do that for a loved one. But I do now. Something to think on.
Nehemiah 8:10 "The joy of the Lord is your strength!!"
Anthony came next to see mom. He said she was sound asleep the first 45 minutes he was there and he couldn’t wake her. He did her physical therapy/range of motion exercises again anyway while she slept. He said that when she woke up, she was very, very drowsy so they just talked and watched TV. Dad joined Anthony and Dad said he did mom’s exercises again in the mid-afternoon. He said she slept a lot. He also said that he talked to the head of respiratory today and asked when mom would get back to a trach collar but the respiratory person just maintained that, though mom is definitely progressing, she still has times at night or when sleeping when she isn’t breathing over the vent…. I say she needs more MOTION!! The physical motion stimulates her brain…at least from what I have seen. Dad also talked to a nurse about the possibility that mom doesn’t get fed (still through the G-Tube) at, and throughout, the night. The nurse agreed that the high protein formula mom is getting shouldn’t be given at night and would seem to prohibit and interfere with sleeping. The nurse said that the food is given at night so that feeding doesn’t interfere with the day’s activities. We need to look into this. Dad also read about optogenetics in his Popular Mechanics magazine and shared the theory with the head of respiratory, who was intrigued and surprised to hear of such a treatment option.
When I saw mom, later in the afternoon today, she was awake but definitely not talkative and seemingly stubborn or “in a mood.” She has been this way with me for days now. Today was comical and definitely “vintage mom” though. I began a conversation with her when I arrived, asking her who came to see her today and whether she ate anything today etc. At one point, dad had told me he brought mom a new magazine today, so I asked her, “Mom, did dad bring you a new magazine today?” To which she replied, “No.” So I replied, “Yes, he did, silly, it’s right here. Look.” To which mom replied, “Then why did you ask me?” I cracked up!!! She gave me the correct coinciding look of disgust and everything!!! Too funny!!!
John came to see mom this evening. He said that mom was out of sorts. She was awake when he arrived but she didn't really interact with him at all. He tried talking to her but she didn't respond. He said that she knew who he was and appeared to be happy to see him at first but then went into a mood that looked like she was maybe depressed or annoyed or angry...or disgusted. He and Dad thought she looked like she was in pain most of the time so they called the nurse and the nurse gave her tylenol. He tried to do her physical therapy but had to stop working her hands because she winced so much and said, "Ow" alot. He tried to do the sewing card but she took it and put it down over and over so he said, "OK we don't have to do this." Dad called the respiratory therapist to change her trach tubes and filter and she appeared better. John was also concerned because she did alot of shaking of her hands and arms. This could be a good thing though so we need to have the physical therapist assess this for us. i am wondering about the food she is eating. When you think that she hasn't eaten by mouth in 8 months, maybe the food she is trying is too harsh and the process/content of what she is eating is making her uncomfortable in her stomach and intestines.
In class, I was watching a video with my students about a child with autism and the speaker was talking about the importance of having a right attitude and hope. And he said 2 things that spoke to me, “Looking at where a person is functioning today tells me nothing about where that person can be tomorrow” and “How can I kiss the ground that others curse?” All could think was, “Wow.” This applies so much to mom and helps to put things in perspective, once again, for me. The first statement speaks for itself. The second one is intriguing. It makes me think way back to almost the beginning of when this happened to mom, and how I tried to look at mom and my relationship with her through a different lens. How life is such a mystery. How the things that happen to us during a lifetime are a mystery. I guess that, when I thought about that comment of kissing the ground that others curse in reference to mom today, it made me remember that mom is still mom at her core. She is still there. She is just in a different state of being…and I remember that there are times when I am with mom now and it’s OK. There is still closeness there. There is still love there. It’s just different. And I remembered what I used to say way back when…if I can shift the lens, from me and my needs, to her and her needs…then this is such a wonderful opportunity to give to her. To love on her. To give back to her for all she has given to me. Not everyone has the chance to do that for a loved one. But I do now. Something to think on.
Nehemiah 8:10 "The joy of the Lord is your strength!!"
Monday, February 14, 2011
Mom Update, February 14, 2011, Monday
Dad began the day with mom this morning. He came early in the morning and found mom sound asleep. He put her hearing aids in and her glasses on but didn’t realize that he could do her physical therapy/range of motion, even though she was sleeping, so dad left and came back later. Anthony came next and wrote that mom was still very sleepy and wouldn’t wake up for very long. When I arrived in the afternoon, one of the nurses who we love, greeted me with a big “Happy Valentine’s Day Kathy” and gave me a hug and a kiss. When I got to mom’s room, I found dad and Claudia there with mom. Mom was leaning over to one side, asleep again. When she woke, I said hello and mom just stared at me. Claudia brought a craft activity from Michaels!! She has the best ideas. It was a foam activity kit of a ladybug. Claudia helped mom make the ladybug hand over hand, using glue and various foam pieces. The head respiratory therapist told Claudia that, although mom is doing better with her breathing, she is still having episodes where she is not breathing much above the vent still at night. He said that she is doing much better each week, but the night respiratory people still say that she isn’t consistently breathing above the vent. The head of physical therapy said he would speak to mom’s physical therapist about whether or not he came to see mom lately and get back to us. Hopefully, he didn’t come today because mom is out of it!! Asleep a lot!!! She is sleeping again now too. Mom had some constipation again over the weekend so the nurse gave her something for it this afternoon. The speech therapist came to tell us that mom ate a Lorna Dune cookie and had a full cup of cranberry juice. Dad said that the speech therapist gave mom the cookie first and then tried to give her some fruit salad but mom didn’t want it; she only wanted the juice. I am wondering if some of this high sugar food is contributing to mom’s sleepiness?? Especially today? We will have to investigate better types of food to reintroduce to mom. The speech therapist also said that the respiratory people told her they are against mom having the Passy Muir valve for talking at this time while she is on the vent because they feel it would put her at too much danger regarding her breathing. The respiratory people said they only use the valve with the trach collar and that mom is on the slow road back to the collar. The speech therapist said that mom is definitely talking a lot more, even to her. Dad and I tried to let mom work with the thera-putty for a while. She squeezed it with her right hand but then fell asleep with it in her hand. Dad also had mom try to pull apart the magnetic piggies that JoAnn gave her as well. Claudia ended the day with mom today. When she arrived tonight, mom was awake and alert and happy (good, but bad too!! She is mixing up her days and nights again!!). Claudia said she did mom's physical therapy/range of motion fully...stretched her out really well, but Claudia didn't lift her legs up to her abdomen because she didn't want to wake her up more...she wanted her to relax. Mom read the "Great South Bay" newspaper. Claudia read some of the stories to mom. Then mom grabbed the paper and Claudia helped mom move her hand to turn the pages. As mom looked and looked, mom licked her finger to turn the page...but Claudia had to help her turn it by lifting her arm to turn the page. She never turned the page independently at all any of the time, but there were more and more spontaneous attempts to do so. This made her arm have to work more. Claudia tucked mom in and prayed with her and dimmed the lights and timed the TV.
Today was a difficult day for me. I had a lot going on and can't elaborate here, but the point is that mom was, is, and would have been my touchstone during this trial...and of course, she isn't there to do that for me any more. However, just as I was at the lowest point of the day, I felt a hand on my shoulder from behind and turned to see my dear friend, Sister Marie, standing beside me...and before I could say anything, she said, "Kathy, I just want you to know that I am praying for you each day. I don't know how you do it all and I want you to know I am lifting you up in prayer each day. It's all I can do." God is so good. He has sent me some wonderful angels where I work and Sister Marie is one of them. Her words of encouragement mean so much to me. Another faithful friend I have at work is Sister Mary Ann, who writes to me every one of these past 267 days of this trial....every day she writes. I look forward to her response to me each day...her personal notes of love lift me up at the start of every day. Sister Miriam always reminds me of where mom was before and where she is now....pointing out how much progress she has made when I can't see the progress because I am too close to notice. God is good indeed. I know many of you are praying for us all and believe me, it matters and it works. Don't stop. Happy Valentine's Day to everyone. Hope your day was filled with love and that your year will be filled with much more. Our family loves you all dearly.
"Do not fear...I have summoned you by name; you are mine." Isaiah 43:1
"I have loved you with an everlasting love; I have drawn you with unfailing kindness." Jeremiah 31:3
Today was a difficult day for me. I had a lot going on and can't elaborate here, but the point is that mom was, is, and would have been my touchstone during this trial...and of course, she isn't there to do that for me any more. However, just as I was at the lowest point of the day, I felt a hand on my shoulder from behind and turned to see my dear friend, Sister Marie, standing beside me...and before I could say anything, she said, "Kathy, I just want you to know that I am praying for you each day. I don't know how you do it all and I want you to know I am lifting you up in prayer each day. It's all I can do." God is so good. He has sent me some wonderful angels where I work and Sister Marie is one of them. Her words of encouragement mean so much to me. Another faithful friend I have at work is Sister Mary Ann, who writes to me every one of these past 267 days of this trial....every day she writes. I look forward to her response to me each day...her personal notes of love lift me up at the start of every day. Sister Miriam always reminds me of where mom was before and where she is now....pointing out how much progress she has made when I can't see the progress because I am too close to notice. God is good indeed. I know many of you are praying for us all and believe me, it matters and it works. Don't stop. Happy Valentine's Day to everyone. Hope your day was filled with love and that your year will be filled with much more. Our family loves you all dearly.
"Do not fear...I have summoned you by name; you are mine." Isaiah 43:1
"I have loved you with an everlasting love; I have drawn you with unfailing kindness." Jeremiah 31:3
Sunday, February 13, 2011
Mom Update, February 13, 2011, Sunday
Today was Claudia’s birthday. She began the day with mom. She told mom, “Hey, it’s my birthday!” and mom mouthed, “It’s my birthday too” –this is a joke from the ‘I Love Lucy’ show that we often say to each other. She also wrote, "Happy Birthday Claudia" on the white board but mom wouldn't read it. Claudia worked for a while with mom. She did mom’s physical therapy/range of motion exercises and said that mom had a lot of muscle shaking. Claudia kept putting mom's left hand on the balls stretched out and her hand would come off the ball so Claudia had to keep repositioning it. She noted that mom's left hand was very crunched up. Then, they did the pop-lock beads hand over hand; mom couldn’t do them alone (before the incident, mom could snap them together and pull them apart independently). They tried the scissors next but mom couldn’t do any cutting and couldn’t manipulate the scissors independently either, so Claudia did them hand over hand too. She noted that mom didn't even know where her fingers go in the right holes. As Claudia did hand over hand with the scissors, she did "Open Close" 10 times and said it at the same time too. Claudia tried to do some lacing/sewing but mom pushed it away so Claudia said, "Ok, not today. That's alright." Mom loved doing the pom poms today...she enjoyed picking them up and she was even able to put 2 into the holes in the container. Claudia had to help mom do the rest..put the rest in the holes hand over hand. They did the mega-blocks together next. Claudia asked mom if she wanted to do them and she said, “Yes.” Claudia asked mom to lift her arm and mom mouthed, “How?” They also tried to put the blocks in the bucket. They used the mega blocks and Claudia told mom to place them into the bucket and Claudia said, “This is hard.” Mom turned her head and snapped at Claudia saying, “It IS hard!”in an aggravated manner. Claudia put the blocks on the table then and asked mom if she wanted to play with them and she mouthed yes...so Claudia put a 4 post block on the table and then she gave mom another 4 post block and mom lined it up and stacked it on the other 4 post block. Then, mom put a 1 post block on top of it independently. Claudia said that she only made mom do 3 of every task pretty much because it took mom a long time to complete any given task. Claudia gave mom the oversized plastic tweezer next...though mom held the tweezer, mom laid the tweezer on the table then mom put the pom pom into the tweezer but couldn't squeeze the tweezer to pick up the pom pom. This is how mom originally approached this task months ago when it was first introduced to her...then she progressed to doing it on her own correctly.
Anthony, Con, Anthony Michael, and Samantha came next. Anthony did mom’s physical therapy exercises twice while he was there. Anthony also continued to work on mom’s feet and legs. I think Anthony has another career as a physical therapist!!! He does a fantastic job with mom's legs and feet. Mom moved both feet a lot and tried to lift her right leg. They joked and laughed alot!! They all played with the Nerf guns today too. Mom squeezed the trigger independently a few times. She even shot a picture of Lenny!! Bulls eye!! Mom's left hand hurt alot today. They looked at magazines with mom and talked and laughed. Sammy wrote mom a beautiful letter in the “Love Notes to Dotty” book (we showed it to mom later and mom started to cry a little):
Dear Nonny,
You are doing great. Every single day you are getting better and better. So many people love and miss you so much. Also I can’t believe you are eating a little food now. You have come so far through this journey. I am so proud of you. Ooh…and you should be proud of yourself. I also have to tell you some good news. I passed my confirmation test and I picked my name. My name I picked is Dorothy after you. The reason I picked you is because you are so strong and you are so kind to everyone. Nonny, you are my inspiration. I love you sooooo much.
Love Always, Samantha
Dad and Terry came next and they said that mom did a lot of talking/mouthing words, answers and sentences. She was very alert. She had a bit of a problem breathing but it turned out to be a filter problem. Once the filter was changed by the respiratory therapist, she was fine. They looked at family pictures with mom and also the "All About Me" book. She stared and stared at the picture of mom and dad's living room. Dad also began to read to mom. Terry said that mom tried to turn the pages and wanted to hold the book herself. Mom fell asleep on and off during their visit. Terry said that yesterday, mom put her arm around dad.
We took dad out to dinner in Port Jefferson for a fish dinner tonight. He’s been craving it all week! Lenny, Dad, and I came to visit mom after dinner. When Lenny came in, he said, “Hi Nonny!” and mom mouthed, “Hi Sweetie! How are you doing?” Lenny said, "I'm doing good. How are you?" then mom mouthed, "I'm doing good too." Then Lenny asked mom to read his jacket and she did (it said 'NEW YORK'). Dad and Lenny started to talk about her sneezing and Lenny said, "Well you know what the head respiratory person is going to say!" and mom mouthed, "What?" Lenny read the OLOG bulletin from mom's church with mom, but mainly, mom read it alone without help!! Lenny worked on her arms using the orange, scrunchy tube. He also used the tube like a telephone---he put one end to her ear and spoke and then asked her to talk back to him (she mouthed a few words when it was her turn). Lenny told her all about college and his classes and how he is doing. When Lenny left, he said, "Bye Nonny, I love you" and mom mouthed, "I love you too sweetie."
Lenny prayed with mom (she mouthed the entire 'Our Father' with him) while I set up the TV on the timer, then we left.
"Great is His faithfulness..." Lamentations 3:22
Anthony, Con, Anthony Michael, and Samantha came next. Anthony did mom’s physical therapy exercises twice while he was there. Anthony also continued to work on mom’s feet and legs. I think Anthony has another career as a physical therapist!!! He does a fantastic job with mom's legs and feet. Mom moved both feet a lot and tried to lift her right leg. They joked and laughed alot!! They all played with the Nerf guns today too. Mom squeezed the trigger independently a few times. She even shot a picture of Lenny!! Bulls eye!! Mom's left hand hurt alot today. They looked at magazines with mom and talked and laughed. Sammy wrote mom a beautiful letter in the “Love Notes to Dotty” book (we showed it to mom later and mom started to cry a little):
Dear Nonny,
You are doing great. Every single day you are getting better and better. So many people love and miss you so much. Also I can’t believe you are eating a little food now. You have come so far through this journey. I am so proud of you. Ooh…and you should be proud of yourself. I also have to tell you some good news. I passed my confirmation test and I picked my name. My name I picked is Dorothy after you. The reason I picked you is because you are so strong and you are so kind to everyone. Nonny, you are my inspiration. I love you sooooo much.
Love Always, Samantha
Dad and Terry came next and they said that mom did a lot of talking/mouthing words, answers and sentences. She was very alert. She had a bit of a problem breathing but it turned out to be a filter problem. Once the filter was changed by the respiratory therapist, she was fine. They looked at family pictures with mom and also the "All About Me" book. She stared and stared at the picture of mom and dad's living room. Dad also began to read to mom. Terry said that mom tried to turn the pages and wanted to hold the book herself. Mom fell asleep on and off during their visit. Terry said that yesterday, mom put her arm around dad.
We took dad out to dinner in Port Jefferson for a fish dinner tonight. He’s been craving it all week! Lenny, Dad, and I came to visit mom after dinner. When Lenny came in, he said, “Hi Nonny!” and mom mouthed, “Hi Sweetie! How are you doing?” Lenny said, "I'm doing good. How are you?" then mom mouthed, "I'm doing good too." Then Lenny asked mom to read his jacket and she did (it said 'NEW YORK'). Dad and Lenny started to talk about her sneezing and Lenny said, "Well you know what the head respiratory person is going to say!" and mom mouthed, "What?" Lenny read the OLOG bulletin from mom's church with mom, but mainly, mom read it alone without help!! Lenny worked on her arms using the orange, scrunchy tube. He also used the tube like a telephone---he put one end to her ear and spoke and then asked her to talk back to him (she mouthed a few words when it was her turn). Lenny told her all about college and his classes and how he is doing. When Lenny left, he said, "Bye Nonny, I love you" and mom mouthed, "I love you too sweetie."
Lenny prayed with mom (she mouthed the entire 'Our Father' with him) while I set up the TV on the timer, then we left.
"Great is His faithfulness..." Lamentations 3:22
Mom Update, February 12, 2011, Saturday
I started the day with mom after not seeing her all week. I had a sinus infection and a bad cough. I wore a mask and gloves and mom seemed puzzled at first. I explained I was sick but she still seemed puzzled. Mom was awake and happy. I did her PT range of motion exercises. She had great range of motion. I gave her pop beads to pull apart and she hel them in her hand and fell asleep. When she woke up she held on to the beads and I held her wrists to help her pull them apart. She did well but a few times I had to help her right hand hold onto the bead. I then took the big buttons and spread them out over the tray. I took the container that they go in and said very matter of factly, "Hey mom, can you help me clean this up?" She nodded yes and said "Yeah." She then began to pick up each button and place them in the container. I held her wrist and hand over the container and had to verbally prompot her to let go. She did. I gave her the magna doodle but she didn't really make an attempt to write today. WHen it was time to leave I asked her, "Do you want to watch a TV show or a movie?" Mom said, "Movie." I gave her a choice of Moonstruck and Crossing Delancy. She reached up and took Crossing Delancy. I took that as her making a choice. I moved her wheel chair close to the TV and set her up with the movie. Anthony came next and he said mom was in a great mood but didn't want to do anything. He did her PT and when he was working with her legs she actually pushed against his hand as he worked with her. This was her right leg. Her left leg didn't move independently. They watched Moonstruck together and mom had a good time. Dad and Terry also came to see mom. I am sorry I don't have details but I wasn't able to get in touch with dad before writing the blog tonight. Kathy is upstate visiting a friend.
Peace and be well to all,
Claud
Peace and be well to all,
Claud
Friday, February 11, 2011
Mom Update, February 11, 2011, Friday
Anthony and I began the day with mom this morning. She was happy to see us both. We talked to her and she smiled or laughed/chuckled on and off. Shortly after, the speech therapist came to feed mom. Today, mom had a full banana and also a full cup of cranberry juice. Mom did well with chewing and swallowing. The banana was cut into circles and the juice is a thick consistency. Mom even held the cup of juice, and near the end of the cup, she was able to lift the cup to her mouth and tilt it but not enough to run the liquid out---she needed help with that. The therapist said that, next week, she would start new foods but not a full meal yet until the modified barium swallow test. Anthony kept mom laughing. Mom’s CNA told Anthony that she had to lower the back of mom’s chair to more of a reclined position because she saw mom reaching forward to pick up a pillow that dropped on the floor!!! Good thing she didn’t fall! Anthony worked long and hard today on mom’s legs and getting her to move them. She lifted her right leg several times and dad said she lifted the left leg once too. Mom also moved both feet really well today. The head of respiratory and the pulmonologist came to see mom today and said that she is breathing very well. Dad said that mom mouthed things to them and answered their questions and shook their hands and that they were very impressed with her progress!!! The daily respiratory therapist told Anthony that mom is breathing well and her CO2 levels have been great too, so she is recommending that mom’s vent be lowered more on Monday. Dad and I also told the physical therapist about mom’s physical advances and he said he’d come see her on Monday to re-evaluate her. Mom kept her eyes closed most of the mid-to-late afternoon…squinting them on and off and making that painful looking face. Mom answered a lot of questions we asked her and mouthed phrases too. Dad said that, when he arrived, mom kept grabbing him and pulling him very close to her. Dad didn’t know what she was doing at first but then mom put her arms around dad and hugged him….!! Claudia called mom on my cell phone and mom talked to Claudia!! Mouthed answers and comments to her! I later found out that Claudia told mom that it is her birthday on Sunday, and mom mouthed, “That’s good.” Mom also answered, “Yes” several times and “oh” once. Claudia said that mom was answering appropriately. Claudia spoke to mom while I held the phone by mom’s ear and then as mom mouthed responses, I said them aloud so that Claudia could hear. Dad, mom and I watched a Channel 13 special that Tom taped for mom called, “Pioneers of TV – Westerns” and mom watched with interest. She was moving her hands around a lot today!! We spent time drawing and trying to write, first, we used the markers and the dry erase board. Mom made lots of marks and broad, wide strokes on the board using different colors. She couldn’t trace any of the letters or color in the lines, but she made many marks on the board. I would ask her which color she wanted while presenting 2 markers and she would pick one. Mom also tried to write on the letter white board too…again, she couldn’t trace or write actual letters, but she made many marks on the page. I also tried a simple tracing page and then a simple maze page…mom couldn’t do either but she did make marks on the page. We tried the IPAD next. We used the stylus to trace numbers hand over hand. I have been forgetting to mention that, over the last week, mom watches TV and laughs at the sitcoms---like “Everybody Loves Raymond” and “Seinfeld.” Dad was joking with mom and she laughed – he asked her who, “Dr. Fosenghoul” is (that’s dad’s cousin, Angelo’s, funny name he uses to make mom laugh) and mom said, “Angelo” --- she remembered. We did the “Dotty’s Crossword Puzzles” and “Dotty’s Word Search” books that Claudia made for mom. Mom enjoyed reading them. I gave mom a picture by the artist, Michael Albert, that my friend, Barbara, gave her. It was a collage of the 23rd Psalm. Mom looked at it and said, “Ohhh… how beautiful.” Mom and I watched TV after
dad left and then we read some “Pig stories” together. Then we prayed and I set up her TV and put her to bed.
"We, who are many, are one body in Christ, and individually members of one another." Romans 12:5
dad left and then we read some “Pig stories” together. Then we prayed and I set up her TV and put her to bed.
"We, who are many, are one body in Christ, and individually members of one another." Romans 12:5
Thursday, February 10, 2011
Mom Update, February 10, 2011, Thursday
I began the day with mom before work. I woke her and she smiled at me at first but then went blank sort of... I think on purpose. She is being finicky with me again! She was bright eyed but somber...maybe still sleepy or sleeping with her eyes open!! I put her hearing aids in and glasses on and put on some Andrea Bocelli and talked to her and did some physical therapy. Then she kissed me good-bye and I left for work.
Dad saw mom in the early afternoon and said that she was awake and alert and happy to see him. He did her full physical therapy/range of motion exercises and talked to her and watched TV. He said she spoke to him too, mouthing words, but he didn't understand all of it. He said that she moved both her feet when he worked on her legs. Dad said that mom ate another banana today too and did well with eating it!! Dad also said that Aunt Carol and Tommy came to visit mom today too!!! What a treat for her!!! He said she was happy to see them but I don't have any other details...more on that tomorrow after I talk to Aunt Carol.
John came to be with mom late in the afternoon and early evening. He put her to sleep tonight too. He said that mom was sleepy. He asked her who he was and she mouthed, "John." He asked her to tell him that she loved him and she did and she told her he loved her too. He said she slept on and off and made faces like she was having a nightmare or was in pain as she slept. He said that she also tugging on her right ear too. he went to clean it and she winced. We will tell the nurse about it in the morning. He asked the nurses to put her mitts on and it took a long time for them to come put them on so that he could leave to go home.
"When you lie down, you will not be afraid; When you lie down, your sleep will be sweet." Proverbs 3:24
Dad saw mom in the early afternoon and said that she was awake and alert and happy to see him. He did her full physical therapy/range of motion exercises and talked to her and watched TV. He said she spoke to him too, mouthing words, but he didn't understand all of it. He said that she moved both her feet when he worked on her legs. Dad said that mom ate another banana today too and did well with eating it!! Dad also said that Aunt Carol and Tommy came to visit mom today too!!! What a treat for her!!! He said she was happy to see them but I don't have any other details...more on that tomorrow after I talk to Aunt Carol.
John came to be with mom late in the afternoon and early evening. He put her to sleep tonight too. He said that mom was sleepy. He asked her who he was and she mouthed, "John." He asked her to tell him that she loved him and she did and she told her he loved her too. He said she slept on and off and made faces like she was having a nightmare or was in pain as she slept. He said that she also tugging on her right ear too. he went to clean it and she winced. We will tell the nurse about it in the morning. He asked the nurses to put her mitts on and it took a long time for them to come put them on so that he could leave to go home.
"When you lie down, you will not be afraid; When you lie down, your sleep will be sweet." Proverbs 3:24
Wednesday, February 9, 2011
Mom Update, February 9, 2011, Wednesday
Dad began the day with mom this morning. He arrived around 9:00 a.m. and found mom asleep. He tried to talk to her and wake her but she was sleepy. He put her hearing aids in and glasses on and let her sleep awhile. Anthony joined Dad. Mom had a shower and then Anthony and dad did her full physical therapy/range of motion exercises and worked on her moving her legs. Anthony said that, while she couldn't lift her legs, she moved both feet and ankles. She drew on the dry erase board with the marker, then they talked and watched TV.
I spoke to the speech therapist today. She said that mom is doing really well with the trial, preliminary swallow testing that is being done now at the facility. Mom had ½ a banana yesterday!! She chewed, swallowed and tolerated the food well. The speech therapist said that she would like to move mom along in the re-introduction to food by mouth, but wants to be safe and wait for the modified barium swallow test at the hospital before proceeding too much more forward. The speech therapist feels that it is ridiculous to wait until March 28 for the test to be done. The therapist is trying hard to get the test moved up if possible. The speech therapist said that she has no problem considering the Passy Muir valve (the talking valve that would allow mom’s voice to be heard aloud) for mom but the therapist wants to collaborate with the respiratory people first. The valve allows audible speech by slightly shrinking the cuff in the airway pipe that leads to the lungs in order to allow a small amount of air to leak through in order to produce sound. The “cuff” typically closes off the airway into the lungs so that only the vent pushes air in and out. In order to use the valve, a person on a vent needs to be able to breathe on his/her own to a degree. If they decide to OK the valve (typically, only people on a trach collar get the valve), it will be used on a trial basis at first and only when family members are present to talk to and with mom. The speech therapist said that she, too, has noticed that mom is speaking more, even to her. We will see how this unfolds.
When I came this afternoon (middle of afternoon), mom was tired. She didn’t sleep at all, but she had absolutely no motivation to work along with a bit of a stubborn attitude. She kept looking away from me and giving me her “before-all-this-happened” look of annoyance and/or disgust!! It was good to see that look again, despite it’s meaning!! I had tried to do some of the apps on the IPAD, but no luck. When mom was moved to bed late in the afternoon, she fell asleep for a while. I left for work.
Con, Sammy, Anthony and Dad visited mom tonight. Mom was sleeping when they arrived and she was in a really good mood. They did her full physical therapy/range of motion exercises and talked and watched TV. They also worked with strengthening mom's arms with the orange scrunchy tube and they did the mouth exercises that Carmine showed dad how to do. They said that mom put both her hands together---which is hard for her to do. They tucked her in and prayed with her.
"May the Lord lead your hearts into a full understanding and expression of the love of God and the patient endurance that comes from Christ" 2 Thessalonians 3:5
I spoke to the speech therapist today. She said that mom is doing really well with the trial, preliminary swallow testing that is being done now at the facility. Mom had ½ a banana yesterday!! She chewed, swallowed and tolerated the food well. The speech therapist said that she would like to move mom along in the re-introduction to food by mouth, but wants to be safe and wait for the modified barium swallow test at the hospital before proceeding too much more forward. The speech therapist feels that it is ridiculous to wait until March 28 for the test to be done. The therapist is trying hard to get the test moved up if possible. The speech therapist said that she has no problem considering the Passy Muir valve (the talking valve that would allow mom’s voice to be heard aloud) for mom but the therapist wants to collaborate with the respiratory people first. The valve allows audible speech by slightly shrinking the cuff in the airway pipe that leads to the lungs in order to allow a small amount of air to leak through in order to produce sound. The “cuff” typically closes off the airway into the lungs so that only the vent pushes air in and out. In order to use the valve, a person on a vent needs to be able to breathe on his/her own to a degree. If they decide to OK the valve (typically, only people on a trach collar get the valve), it will be used on a trial basis at first and only when family members are present to talk to and with mom. The speech therapist said that she, too, has noticed that mom is speaking more, even to her. We will see how this unfolds.
When I came this afternoon (middle of afternoon), mom was tired. She didn’t sleep at all, but she had absolutely no motivation to work along with a bit of a stubborn attitude. She kept looking away from me and giving me her “before-all-this-happened” look of annoyance and/or disgust!! It was good to see that look again, despite it’s meaning!! I had tried to do some of the apps on the IPAD, but no luck. When mom was moved to bed late in the afternoon, she fell asleep for a while. I left for work.
Con, Sammy, Anthony and Dad visited mom tonight. Mom was sleeping when they arrived and she was in a really good mood. They did her full physical therapy/range of motion exercises and talked and watched TV. They also worked with strengthening mom's arms with the orange scrunchy tube and they did the mouth exercises that Carmine showed dad how to do. They said that mom put both her hands together---which is hard for her to do. They tucked her in and prayed with her.
"May the Lord lead your hearts into a full understanding and expression of the love of God and the patient endurance that comes from Christ" 2 Thessalonians 3:5
Tuesday, February 8, 2011
Mom Update, February 8, 2011, Tuesday
Mom’s vent is down from 10 to 8 (rate). This is good. Please continue to pray that the vent goes down and mom gets off it once and for all. Thanks. I began the day with mom today instead of Ava. Ava had bad migraines and couldn’t go to mom. Mom had her eyes squinty shut so I opened them and she smiled and looked at me with wide, happy eyes. I noticed that her right mitt was not put on correctly and that the “posey” (small, soft cushion that goes in the mitt to prevent hand/finger curling) was not in the left mitt. The left hand is the weaker of the 2. I told the nurse and he found the head of all the nursing staff, and I voiced my concerns to her, as well as to the nurse in charge at the desk. I did mom’s full physical therapy/range of motion exercises. She wiggled her toes on command on both feet but couldn’t move her ankles on command. One of the nice respiratory therapists came in today, and gave mom a small, crystal piggy!! Mom was so surprised. I said, “Mom, look who’s here?” Mom said, “Who’s that?” but when she saw the piggy, she mouthed, “Thank you!” I said, “Isn’t that great?!” and she said, “That’s great!” As we did her exercises, I asked her if she wanted to listen to music and she shook her head yes, so I put on Andrea Bocelli and when I asked if she liked it, she mouthed “Yes.” I asked her if Claudia brought it and she mouthed, “no” then I said, “Who then? Anthony?” and she mouthed, “I think it was him.” Her arms and hands shook a lot during physical therapy which is good because it means that her brain is making connections with her body. I kissed her good-bye and left for work.
Dad came a little later and did mom’s full physical therapy again. He said that, when he put his arm under her right leg, mom lifted it slightly. He said that she also moved her feet side to side and up and down. The coordinator who arranges the tests at the hospitals came to talk to dad and said that St. Charles Hospital has all the paperwork for mom to get the modified barium swallow test, the CAT Scan of her sinuses and head. The only date they have available is for March 28!! She is trying to see if Mather Hospital can get mom in sooner. Then, dad and mom went to a birthday party in the recreation room. A man was there playing the guitar and mom mouthed the words to some of the songs and everyone became very excited about it. At one point, mom grabbed her trach line and dad removed her hand and said, “Hey! Don’t touch that anymore. We want you to get better and come home. We all want you home! Are you listening to me?” Mom said, “Yup.” Dad said, “What did I say?” Mom said, “You want me home.” Dad and I worked on trying to get mom to lift her legs one at a time. Dad put his arm under her right leg and I kept repeating, “Move my leg” over and over and alternately moving mom’s leg up and down. She managed to move her right foot on command this way and moved her leg slightly upward too. She did this about 3-4 times with the right leg and wiggled her left ankle several times. She also flexed her right calf muscle. I said good-bye to mom and left for work. Dad left shortly after I did. John came to be with mom tonight. He said that, when he first saw her, he said hello and asked her who he was and she said, “John” and gave him a huge smile. He showed her the piggy that Ava bought her for Christmas and asked her who bought her that and mom said, “I don’t know” so John told her. The second time John asked her who bought her the piggy, mom said, “Ava” so she remembered. John did mom’s sewing card with her and mom couldn’t do it alone so John put the lace through the hole from the bottom so that the tip of the lace stuck through the hole. He then had mom grab the lace and finish pulling it through. At first, John prompted mom hand over hand along with verbal prompting, but then Mom did it all alone. He also did all the family photos with mom too. She couldn’t name anyone but she looked with interest. As they went through each photo, he told a funny story about the person and mom laughed. Then, John did Carmine’s pictures with mom and she spoke a lot but he largely couldn’t understand what she was saying. John did mom’s full physical therapy/range of motion exercises and mom counted with him as she exercised. They joked and laughed the whole time. John said that tonight was one of the best night’s he had with mom and the most alert looking she was.
“Love must be sincere.” Romans 12:9
Dad came a little later and did mom’s full physical therapy again. He said that, when he put his arm under her right leg, mom lifted it slightly. He said that she also moved her feet side to side and up and down. The coordinator who arranges the tests at the hospitals came to talk to dad and said that St. Charles Hospital has all the paperwork for mom to get the modified barium swallow test, the CAT Scan of her sinuses and head. The only date they have available is for March 28!! She is trying to see if Mather Hospital can get mom in sooner. Then, dad and mom went to a birthday party in the recreation room. A man was there playing the guitar and mom mouthed the words to some of the songs and everyone became very excited about it. At one point, mom grabbed her trach line and dad removed her hand and said, “Hey! Don’t touch that anymore. We want you to get better and come home. We all want you home! Are you listening to me?” Mom said, “Yup.” Dad said, “What did I say?” Mom said, “You want me home.” Dad and I worked on trying to get mom to lift her legs one at a time. Dad put his arm under her right leg and I kept repeating, “Move my leg” over and over and alternately moving mom’s leg up and down. She managed to move her right foot on command this way and moved her leg slightly upward too. She did this about 3-4 times with the right leg and wiggled her left ankle several times. She also flexed her right calf muscle. I said good-bye to mom and left for work. Dad left shortly after I did. John came to be with mom tonight. He said that, when he first saw her, he said hello and asked her who he was and she said, “John” and gave him a huge smile. He showed her the piggy that Ava bought her for Christmas and asked her who bought her that and mom said, “I don’t know” so John told her. The second time John asked her who bought her the piggy, mom said, “Ava” so she remembered. John did mom’s sewing card with her and mom couldn’t do it alone so John put the lace through the hole from the bottom so that the tip of the lace stuck through the hole. He then had mom grab the lace and finish pulling it through. At first, John prompted mom hand over hand along with verbal prompting, but then Mom did it all alone. He also did all the family photos with mom too. She couldn’t name anyone but she looked with interest. As they went through each photo, he told a funny story about the person and mom laughed. Then, John did Carmine’s pictures with mom and she spoke a lot but he largely couldn’t understand what she was saying. John did mom’s full physical therapy/range of motion exercises and mom counted with him as she exercised. They joked and laughed the whole time. John said that tonight was one of the best night’s he had with mom and the most alert looking she was.
“Love must be sincere.” Romans 12:9
Monday, February 7, 2011
Mom Update, February 7, 2011, Monday
Jean was supposed to start mom’s day today because Claudia has a sinus infection but Jean couldn’t because he woke up with a sore throat!!!! Dad and Anthony began mom’s day today instead. So please pray for Claudia and Jean. Dad said that mom did eat again today!!! The speech therapist gave her an entire cup of applesauce and a full cup of honey and lemon. Mom ate and drank both! Mom said, “Apples” to everyone as she ate the applesauce. And she said, “Thank you” to the speech therapist when she was leaving mom.
Dad also said that he and Anthony did mom’s full physical therapy/range of motion exercises as well. When they finished, they tried to see if mom could lift her legs and she was able to lift her right leg off the bed about 4 inches and also moved both her left and right feet at the ankle on command!! Mom was throwing kisses to dad and Anthony too.
Carmine came to see mom today too. Carmine said that it is amazing that mom’s cheek muscles are so strong given the fact that she hasn’t been chewing in so long. He gave us some exercises to do on mom’s mouth. We have to put 2 of our fingers together and gently massage mom’s upper and lower lip area in a circular motion to a count of 10 or so. This will stimulate her muscles and strengthen them. Carmine also showed mom the pictures and, in the past, he wanted mom to look at the correct picture. Today, mom was able to actually point to some of the pictures!! Carmine said to hold regular conversations with mom now.
When I arrived to see mom this afternoon, she was in a sweatshirt and sweatpants and sitting in her wheelchair. Her eyes were squinty shut and, when I said hello, she said, “Shhh…” I opened her eyes and she smiled at me. I took out some activities to do. We tried the orange pom-poms and the oversized tweezers. Though mom initially looked excited about doing the activity, she didn’t show much motivation toward doing the activity of grabbing a pom-pom with the tweezer and placing it in a hole at the top of a container. She made several attempts at grabbing one with a great deal of verbal coaxing from me. She didn’t seem to want to do the activity, but we persevered through it! I did some hand over hand prompting for 3-4 and then I lifted 3-4 more up in my tweezer and held it out toward her tweezer and she’d grab it from my tweezer and put it on top of the container. She actually did grab 1 pom-pom on her own and slowly move it to the top of the container!! I cheered and she just looked annoyed at me!! Hahaha! We tried cutting with scissors next. I handed her a rectangular piece of yellow paper with a line on it (placing it in her left hand), then I placed the scissors in her right hand. She grabbed the scissors and held them correctly immediately. She even opened and closed them twice as well. Then she connected the scissor to the paper (I had to hold her left elbow and move her left arm toward her right one in order for mom to make the connection). She cut 2 nice long cuts into the paper but then stopped and wouldn’t continue. She may have been tired as well. After mom was put into her pjs, we tried to do the large, plastic oversized buttons and putting them into the slot in a container. Mom did 2 buttons alone and then had no interest. I asked her if she was going to work today and she said, “No.” Then, I asked her if she wanted to play games on the IPAD and she nodded, “Yes,” but when I showed it to her, she didn’t want to do anything with it. She looked at me at one point and I asked, “What’s wrong?” and she said, “My____hurts” but I couldn’t understand what she said hurt. Then, mom looked at the pictures on the wall beside her bed and pointed at one (I didn’t know which one) so I asked her to point again and she did. I asked her, “Oh, do you want dad?” and she said, “No, my husband.” So I said he’s right here. Dad came next to her and said, “Here I am! Am I your husband?” Mom mouthed, “No.” Dad said, “I’m not? Who am I then? I’m your husband. Are you happy I’m your husband?” Mom then gave him the most disgusted look!!!! Just like she used to long ago when she would get frustrated and disgusted with dad!!! We all laughed so hard!! Dad sat next to mom and held her hand and read the Patchogue Advance to her. Mom sat and stared at him and listened intently to every word he said. We all 3 decided to “chill” for awhile then and just hang out and watch TV. Mom kept watching and reading the closed captioning on and off. She also commented about some of the things on the commercials. I was doing her physical therapy and cutting her nails and she made a painful face before I even cut her nail so I said, “oh, you’re a phoney!!” and laughed and she mouthed “No, I’m not a phoney!” Dad told me something mom did earlier with Anthony’s finger and she laughed really hard. Sister Suzanne told me today that when mom saw her yesterday, mom really recognized her and greeted her with a look of surprise and a big smile. As I gave mom her manicure, she was continuing to grimace on and off so I said, “Gee, I guess I shouldn’t quit my day job, huh? And I was gonna call my new business ‘Dr. K’s Nails’!!!” Mom cracked up so much!!!
At one point, mom took her right hand and grabbed her trach line and I said, “Hey, stop that, you can’t touch that and you know that.” Mom replied, “Why not?” and I told her, “Because touching it is dangerous.”
Mom’s evening CNA told me this afternoon that when she came in to check on mom at 11:00 p.m. last night, mom was awake. The TV was off and she was up and looking around, so the aide asked mom, “Mrs. G, what are you doing up still?” Mom just looked at her. Then the aide said, “You are supposed to be asleep!! I’m telling Jean on you!” with this, mom laughed so hard that her aide also cracked up laughing!
JoAnn got to mom and Dad kissed mom good-bye and mom began to cry --- tears rolling down her cheeks and all. While this is sad…it is also a miracle that she is feeling emotions again. The nurse came in and asked mom, ‘How are you?” and mom replied, “Very good!” and the nurse was thrilled that mom spoke to her. JoAnn showed mom the “Word Search” and “Crossword” books that Claudia made for her with mom. She did the orange, scrunchy tube with mom but mom’s left thumb hurt her. Then, JoAnn looked at the “Getting Better” book and Carmine’s pictures and mouthed the names of the items like, “Church” and then “airplane” for “airport” but it actually was a picture of an airplane. Then they went through all the other pictures and mom just looked at them without talking. JoAnn said that mom mouthed a lot of words but she didn’t always understand what mom was saying. They read, “God’s Little Instruction Book” next…JoAnn turned the pages and mom read and then mom even tried to turn the page but couldn’t –even though she tried really hard. JoAnn said that mom wiggled her tongue and pointed to it at one point too! Mom rested a few minutes and then got a second wind. JoAnn stretched out mom’s hands and fingers told her to do that in order to get better and make perogies and kielbasa at Easter time. Mom gave her a big smile and then gave JoAnn the “look.” Mom held JoAnn’s hand very tightly. While they waited for mom's mitts to be put back on, Mom was stretching the legs of one of her stuffed animals...maybe practicing stretching her own hands/arms?
“For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope.” Romans 15:4
Dad also said that he and Anthony did mom’s full physical therapy/range of motion exercises as well. When they finished, they tried to see if mom could lift her legs and she was able to lift her right leg off the bed about 4 inches and also moved both her left and right feet at the ankle on command!! Mom was throwing kisses to dad and Anthony too.
Carmine came to see mom today too. Carmine said that it is amazing that mom’s cheek muscles are so strong given the fact that she hasn’t been chewing in so long. He gave us some exercises to do on mom’s mouth. We have to put 2 of our fingers together and gently massage mom’s upper and lower lip area in a circular motion to a count of 10 or so. This will stimulate her muscles and strengthen them. Carmine also showed mom the pictures and, in the past, he wanted mom to look at the correct picture. Today, mom was able to actually point to some of the pictures!! Carmine said to hold regular conversations with mom now.
When I arrived to see mom this afternoon, she was in a sweatshirt and sweatpants and sitting in her wheelchair. Her eyes were squinty shut and, when I said hello, she said, “Shhh…” I opened her eyes and she smiled at me. I took out some activities to do. We tried the orange pom-poms and the oversized tweezers. Though mom initially looked excited about doing the activity, she didn’t show much motivation toward doing the activity of grabbing a pom-pom with the tweezer and placing it in a hole at the top of a container. She made several attempts at grabbing one with a great deal of verbal coaxing from me. She didn’t seem to want to do the activity, but we persevered through it! I did some hand over hand prompting for 3-4 and then I lifted 3-4 more up in my tweezer and held it out toward her tweezer and she’d grab it from my tweezer and put it on top of the container. She actually did grab 1 pom-pom on her own and slowly move it to the top of the container!! I cheered and she just looked annoyed at me!! Hahaha! We tried cutting with scissors next. I handed her a rectangular piece of yellow paper with a line on it (placing it in her left hand), then I placed the scissors in her right hand. She grabbed the scissors and held them correctly immediately. She even opened and closed them twice as well. Then she connected the scissor to the paper (I had to hold her left elbow and move her left arm toward her right one in order for mom to make the connection). She cut 2 nice long cuts into the paper but then stopped and wouldn’t continue. She may have been tired as well. After mom was put into her pjs, we tried to do the large, plastic oversized buttons and putting them into the slot in a container. Mom did 2 buttons alone and then had no interest. I asked her if she was going to work today and she said, “No.” Then, I asked her if she wanted to play games on the IPAD and she nodded, “Yes,” but when I showed it to her, she didn’t want to do anything with it. She looked at me at one point and I asked, “What’s wrong?” and she said, “My____hurts” but I couldn’t understand what she said hurt. Then, mom looked at the pictures on the wall beside her bed and pointed at one (I didn’t know which one) so I asked her to point again and she did. I asked her, “Oh, do you want dad?” and she said, “No, my husband.” So I said he’s right here. Dad came next to her and said, “Here I am! Am I your husband?” Mom mouthed, “No.” Dad said, “I’m not? Who am I then? I’m your husband. Are you happy I’m your husband?” Mom then gave him the most disgusted look!!!! Just like she used to long ago when she would get frustrated and disgusted with dad!!! We all laughed so hard!! Dad sat next to mom and held her hand and read the Patchogue Advance to her. Mom sat and stared at him and listened intently to every word he said. We all 3 decided to “chill” for awhile then and just hang out and watch TV. Mom kept watching and reading the closed captioning on and off. She also commented about some of the things on the commercials. I was doing her physical therapy and cutting her nails and she made a painful face before I even cut her nail so I said, “oh, you’re a phoney!!” and laughed and she mouthed “No, I’m not a phoney!” Dad told me something mom did earlier with Anthony’s finger and she laughed really hard. Sister Suzanne told me today that when mom saw her yesterday, mom really recognized her and greeted her with a look of surprise and a big smile. As I gave mom her manicure, she was continuing to grimace on and off so I said, “Gee, I guess I shouldn’t quit my day job, huh? And I was gonna call my new business ‘Dr. K’s Nails’!!!” Mom cracked up so much!!!
At one point, mom took her right hand and grabbed her trach line and I said, “Hey, stop that, you can’t touch that and you know that.” Mom replied, “Why not?” and I told her, “Because touching it is dangerous.”
Mom’s evening CNA told me this afternoon that when she came in to check on mom at 11:00 p.m. last night, mom was awake. The TV was off and she was up and looking around, so the aide asked mom, “Mrs. G, what are you doing up still?” Mom just looked at her. Then the aide said, “You are supposed to be asleep!! I’m telling Jean on you!” with this, mom laughed so hard that her aide also cracked up laughing!
JoAnn got to mom and Dad kissed mom good-bye and mom began to cry --- tears rolling down her cheeks and all. While this is sad…it is also a miracle that she is feeling emotions again. The nurse came in and asked mom, ‘How are you?” and mom replied, “Very good!” and the nurse was thrilled that mom spoke to her. JoAnn showed mom the “Word Search” and “Crossword” books that Claudia made for her with mom. She did the orange, scrunchy tube with mom but mom’s left thumb hurt her. Then, JoAnn looked at the “Getting Better” book and Carmine’s pictures and mouthed the names of the items like, “Church” and then “airplane” for “airport” but it actually was a picture of an airplane. Then they went through all the other pictures and mom just looked at them without talking. JoAnn said that mom mouthed a lot of words but she didn’t always understand what mom was saying. They read, “God’s Little Instruction Book” next…JoAnn turned the pages and mom read and then mom even tried to turn the page but couldn’t –even though she tried really hard. JoAnn said that mom wiggled her tongue and pointed to it at one point too! Mom rested a few minutes and then got a second wind. JoAnn stretched out mom’s hands and fingers told her to do that in order to get better and make perogies and kielbasa at Easter time. Mom gave her a big smile and then gave JoAnn the “look.” Mom held JoAnn’s hand very tightly. While they waited for mom's mitts to be put back on, Mom was stretching the legs of one of her stuffed animals...maybe practicing stretching her own hands/arms?
“For everything that was written in the past was written to teach us, so that through endurance and the encouragement of the Scriptures we might have hope.” Romans 15:4
Sunday, February 6, 2011
Mom Update, February 6, 2011, Sunday
The results of mom's chest x-ray came back negative!! All clear there! This means, technically, that she can continue with her oral feeding trial. I just pray that the speech therapist at the facility allows this to happen. When mom ran the temp the other day (Friday), the therapist made a point of saying, "Well, even if the x-ray is clear, unless they can specifically pinpoint the cause of her temperature, then all this ends!" She is so controlling and witchy!!! Yuck. So please pray that mom continues with the oral feeding. Also, as always, please pray that mom gets off that vent!!!!!! She is breathing well but the head of respiratory won't let her get off the vent again...another control freak!
Yesterday, when Tom and Donna visited with mom, Tom told a joke and mom laughed and Tom asked, "Did you get it?" referring to the punchline and mom replied, "It took me a minute" but Tom said it really didn't take that long at all for mom to get it.
Claudia began the day with mom. She said that mom was very sleepy. She did mom’s physical therapy/range of motion exercises. Ava came to join her to visit mom. They showed mom the pictures Carmine left and they wrote that she looked at the pictures. Con, Anthony and Anthony Michael came next and mom was awake by then. Anthony said something and mom asked, “What did Anthony say?” Claudia bought make up for mom because she knew that mom would want to look nice for her guests. The CNAs put the makeup on her and she looked great! Dad and Sister Suzanne joined them next. They all talked to mom and she mouthed a lot of words but they couldn’t follow much of what she said. JoAnn and I came next. JoAnn took one look at mom all made up and said, "Oh my God, you look so beautiful." Mom replied, "Thank you, you look beautiful too."
Mom’s choir came to sing to her today! Our heartfelt thanks goes out to everyone who came today to sing to mom. We can't tell you all enough how much we appreciated your gift of song. Mom always loved singing...from my earliest moments in life, I remember mom singing to us...our lives were a musical at times. Mom would stand in the kitchen ironing or cooking and sing at the top of her lungs to her favorite records. The gift of song has been precious to mom always. So your presence and performance today meant alot.
When the choir first arrived, some of them said hello to mom one at a time and mom gave a surprised look and said, “Oh my God.” One of mom’s friends, Patty, gave mom a sign they all made for her that said, “Dear Dotty we miss you…” and mom read it and said, “Thank you, how beautiful.” We all moved into the recreation room. The entire choir encircled her and Mom began to cry when they first started to sing to her (we all cried as well). As they sang, mom mouthed many of the words to the songs. They asked her what song they should sing and mom mouthed, “Amazing Grace” so they sang it for her again and mom mouthed the words along with them. Terry came during the singing. When they asked mom again what she wanted them to sing, mom replied, "Something." When the choir finished singing, the choir director gathered everyone in a circle and we all held hands (mom too) and prayed. We finished with the “Our Father” and mom mouthed the entire prayer. When mom’s friend, Maureen, was saying good-bye to mom, Maureen said, “Good-bye Dotty, I love you.” Mom mouthed, ‘I love you’ back to Maureen but she didn’t see mom say it, so Maureen asked mom, “Do you love me too?” Mom just looked at her and mouthed, “That’s what I said.” So mom!!! We all laughed. When Con and Anthony went to leave, Con sang for mom and she smiled. Anthony said he’d buy mom a gong so she could gong Con when she sings and mom smiled. After everyone left, Dad, JoAnn, Terry and I sat in the recreation room with mom and talked.
Once back in the room, Dad, JoAnn and I watched TV with mom and talked. I tried to put the headphones on mom and do some IPAD app programs, but mom was too tired. She fell asleep. We left for dinner and brought Dad to see TRUE GRIT. Good movie! Dad enjoyed it.
I went back to mom after the movie and tucked her in. She was in bed with her "squinty eyed" look. I opened her eyes and talked to her. She just stared at me tiredly. We prayed and I kissed her good night.
"Sing unto the LORD a new song: sing unto the LORD, all the earth." Psalm 96:1
Yesterday, when Tom and Donna visited with mom, Tom told a joke and mom laughed and Tom asked, "Did you get it?" referring to the punchline and mom replied, "It took me a minute" but Tom said it really didn't take that long at all for mom to get it.
Claudia began the day with mom. She said that mom was very sleepy. She did mom’s physical therapy/range of motion exercises. Ava came to join her to visit mom. They showed mom the pictures Carmine left and they wrote that she looked at the pictures. Con, Anthony and Anthony Michael came next and mom was awake by then. Anthony said something and mom asked, “What did Anthony say?” Claudia bought make up for mom because she knew that mom would want to look nice for her guests. The CNAs put the makeup on her and she looked great! Dad and Sister Suzanne joined them next. They all talked to mom and she mouthed a lot of words but they couldn’t follow much of what she said. JoAnn and I came next. JoAnn took one look at mom all made up and said, "Oh my God, you look so beautiful." Mom replied, "Thank you, you look beautiful too."
Mom’s choir came to sing to her today! Our heartfelt thanks goes out to everyone who came today to sing to mom. We can't tell you all enough how much we appreciated your gift of song. Mom always loved singing...from my earliest moments in life, I remember mom singing to us...our lives were a musical at times. Mom would stand in the kitchen ironing or cooking and sing at the top of her lungs to her favorite records. The gift of song has been precious to mom always. So your presence and performance today meant alot.
When the choir first arrived, some of them said hello to mom one at a time and mom gave a surprised look and said, “Oh my God.” One of mom’s friends, Patty, gave mom a sign they all made for her that said, “Dear Dotty we miss you…” and mom read it and said, “Thank you, how beautiful.” We all moved into the recreation room. The entire choir encircled her and Mom began to cry when they first started to sing to her (we all cried as well). As they sang, mom mouthed many of the words to the songs. They asked her what song they should sing and mom mouthed, “Amazing Grace” so they sang it for her again and mom mouthed the words along with them. Terry came during the singing. When they asked mom again what she wanted them to sing, mom replied, "Something." When the choir finished singing, the choir director gathered everyone in a circle and we all held hands (mom too) and prayed. We finished with the “Our Father” and mom mouthed the entire prayer. When mom’s friend, Maureen, was saying good-bye to mom, Maureen said, “Good-bye Dotty, I love you.” Mom mouthed, ‘I love you’ back to Maureen but she didn’t see mom say it, so Maureen asked mom, “Do you love me too?” Mom just looked at her and mouthed, “That’s what I said.” So mom!!! We all laughed. When Con and Anthony went to leave, Con sang for mom and she smiled. Anthony said he’d buy mom a gong so she could gong Con when she sings and mom smiled. After everyone left, Dad, JoAnn, Terry and I sat in the recreation room with mom and talked.
Once back in the room, Dad, JoAnn and I watched TV with mom and talked. I tried to put the headphones on mom and do some IPAD app programs, but mom was too tired. She fell asleep. We left for dinner and brought Dad to see TRUE GRIT. Good movie! Dad enjoyed it.
I went back to mom after the movie and tucked her in. She was in bed with her "squinty eyed" look. I opened her eyes and talked to her. She just stared at me tiredly. We prayed and I kissed her good night.
"Sing unto the LORD a new song: sing unto the LORD, all the earth." Psalm 96:1
Saturday, February 5, 2011
Mom Update, February 5, 2011, Saturday
Mom had such a great day today!!!!!
I started the day with mom this morning. She had an AWESOME morning!!! Claudia’s birthday is the 13th and her family surprised her with a day in NYC—they are doing “Murder
Mystery at the Museum”—so Claudia!!! She is thrilled!! Mom was asleep when I arrived but looked a million times better than last night at 11:00 p.m. PTL!!! Yesterday, her eyes were puffy and swollen by nighttime and she was very dazed and disoriented. We are sure that the whole occurrence was due to constipation. No temperature since yesterday at 2:00 p.m. and no Tylenol since last night at 10:00 p.m. (only had it at 2 and 10).
Anyway, mom was asleep when I arrived so I said hello and she squinted her eyes tightly shut and smiled. I opened her eyes and she was bright and alert and focused!! I said, “Good Morning, Morning Glory!” and she mouthed, “Morning!” with a big smile. She watched my face and paid attention as I talked to her. Her CNA said that, even though it is shower day and she was ready to shower mom, she’d wait until I finished mom’s physical therapy/range of motion exercise first. Mom’s CNA is such a doll. As I began PT, I asked mom, “So are you ready to exercise now?!!” and she mouthed, “Yes” and shook her head, “Yes” too!! I began by telling her to stretch her fingers open and she DID IT on the right hand!!! Then I began to stretch mom’s fingers. As I do this, I sing what we are doing, like: “Stretch your finger. Stretch your finger…” over and over and I count as we do this too. MOM COUNTED THE WHOLE TIME WE DID PT!!!!! which is about 28 times!!! She counted consistently and consecutively from 1 through 10!!!! Sometimes as I counted, I would stop and say, “OK what number comes next?” playfully and MOM KNEW!!!! She was counting with me!! I decided to see if she could move her legs on her own so I asked her to wiggle her toes. She did it on both feet but only slightly. I CHEERED for her!!! And I made a fuss and she smiled proudly! Then I put the 10 inch ball under her right leg and asked her to lift her leg and waited. Nothing. So I said, “Move your leg” over and over as I lifted it. Then I asked her to “think” hard about moving her leg—as I tapped her forehead and said, “Now you say it and think it mom, ‘Move my leg’” and she mouthed, “Move my leg” over and over and over again as I stood and watched her right leg on the ball…at first, it seemed like nothing was happening…but then, as I watched, I saw her big toe move slightly so I cheered her on, yelling, “You’re doing it!!! You’re doing it!!! Do it mom!! You can do it!! You can move your leg!!!” Slowly, she went from moving her big toe to moving her all her toes (ever so slightly---if you weren’t watching, you would think nothing was happening). Then she moved her foot ever so slightly and THEN…her foot lifted off the bed!!!! Millimeters at a time, but it was moving as she was mouthing, “move my leg” over and over and over again. And then she lifted her foot off the bed ½ an inch!!!! I took a picture of it on my cell phone!! I was screaming and cheering her on! And she was smiling and mouthing, “Move my leg” over and over. I showed her the command cards next that my friend, Maureen, made for her. She read each card…every word…but didn’t do any of the commands except “Wiggle your fingers” and “ shake your head no.” She was reading EVERYTHING in sight!! Looking all around and reading whatever print her eyes landed on. I asked her if she wanted to look at the family pictures and mom mouthed, “Yes” so I took out the pictures and showed her them one by one, asking her, “Who’s this?” with each one. The first picture was Dad’s and when I asked if this was Dad, she mouthed, “No” and frowned at me. So I said, “It’s not? Well, then, is it Jean?” and she smiled, relieved and mouthed, “Yes.” She named the next few people quickly, “Ava, Lenny, and Jean” but when I showed her Anthony, she mouthed, “Emil” (that’s John and Con’s brother). She mouthed, “Cucumber” for Anthony Michael (he loves cucumbers!!). She said, “Family” for all the other pictures. She looked out the window then and mouthed, “SNOW!” and I said, “Yes, there’s snow out there.” Then she looked out again and mouthed, “SMOKE.” (there was smoke out the window too). Next, I tried writing with her but rather than write much---she was veraciously reading all the print on the page!! She did, though, try to trace a few letters but couldn’t at all, and she marked on the white board largely. I showed her some of the pictures of body parts. She read the names of things but couldn’t tell me the names without reading them. I had to tell her to read the names when she didn’t know. However, when she came to the picture of the bare feet, she mouthed, “No shoes?” Aunt Lucy called next on the phone and talked to mom. While mom listened, mom looked at me smiling and mouthed, “She remembers me” and then she mouthed, “Aunt Lucy.” She left for her shower next and when she returned, her CNA said that mom was talking up a storm in the shower to her, but she didn’t understand what mom was saying. As the CNAs dressed mom, she talked a lot to them and they were squealing with delight over it! The 2 CNAs said that they wanted mom to pray for them to find “Good men like Mr. G. A man who is committed to the end and stand by your side always.”
Mom and I started to work in the wheelchair next and she looked at me and mouthed, “Kathy, thank you. Thank you so much for…me” I began to cry and said, “You’re welcome.” Then she mouthed, “I have to…I have to…I have to see dad.” I told her he was coming and she mouthed, “When?” I said he was on his way. We tried to do the nut and bolt but mom couldn’t do it, so I did it with her using hand over hand prompting. As we did this, I told her to think, “Turn…turn…turn…” and she mouthed it as we went through the motions. Mom did reach for the nut and bolt (attached together) with her left hand!! Then, once she grabbed them in both her hands, she twisted them perhaps 1/8 or ¼ way around!!! Next, we did the large, plastic buttons and the soup container with the slot in the top. Mom has to put the button in the slot. Mom and I did the first button using hand over hand prompting. The second button, mom reached for and tried to raise her hand to the container but couldn’t so I moved it toward her hand with the button. The third button, mom reached for and moved to the slot in the container and RELEASED it into the container!! She did it again a 4th time alone! Mom
mouthed, “I need an air tube” twice. I told mom, “I love you” and she mouthed back, “I love you too.” She began to get sleepy then and so I let her rest a bit. Mom began to cough and then took my hand and I said, “What?” she mouthed back, “I’m coughing.” I reassured her. We did the IPAD next and listened to songs on the IPOD mode of the IPAD. Mom was mouthing a lot of the words. Then Anthony and Con came and Anthony had her laughing immediately!! Hysterically!!! They told her that Samantha is taking “Dorothy” as her Confirmation name. Mom read the, “All About Me” book with Anthony and Con. As we showed her each page, we asked her to read the pages but she didn’t ---but the next thing we knew, she was telling us what was on the pages without looking at them!!! She had the book memorized!! Anthony said, “Guess it’s time for a new book, huh?” and mom cracked up laughing!! They did her full physical therapy/range of motion exercises too.
Anthony called later in the afternoon to say that the results of urine sample showed an e-coli infection to be treated with antibiotics for 10 days starting tonight at 6:00 p.m. Dad said that they couldn't get the drug mom was prescribed but he complained about it and they found some in the reserves at the facility until more arrives. They did the chest x-ray - no results yet.
Anthony said that they did hand over hand sewing with the sewing card...mom held both ends and tried to do it herself but could not really do it and stopped. They looked at Carmine's pictures but she began to fall asleep when Dad came. Then she was changed and she woke up! Donna and Tom came. She stayed awake and talked whole time. Tom told mom jokes and she laughed really hard at them. The nurse even commented on how awake and alert and interactive mom was. Anthony and Con did physical therapy again before they left.
JoAnn and I visited with mom tonight and we just sat and talked to her. When we first arrived, JoAnn said, "Hi! WOW! You look great!" and mom mouthed back, "Thank you I feel great." She frequently talked back to us. At one point, she told us, “I have to tell you both something.” Her nurses were so excited to see that she is talking to them (mouthing words and phrases...). I tucked her in and prayed with her and then we left.
I will hold this day so close to my heart for so long....it was truly a gift from God. Amen.
"How can we thank God enough for you in return for all the joy we have in the presence of our God because of you?" 1 Thessalonians 3:9
I started the day with mom this morning. She had an AWESOME morning!!! Claudia’s birthday is the 13th and her family surprised her with a day in NYC—they are doing “Murder
Mystery at the Museum”—so Claudia!!! She is thrilled!! Mom was asleep when I arrived but looked a million times better than last night at 11:00 p.m. PTL!!! Yesterday, her eyes were puffy and swollen by nighttime and she was very dazed and disoriented. We are sure that the whole occurrence was due to constipation. No temperature since yesterday at 2:00 p.m. and no Tylenol since last night at 10:00 p.m. (only had it at 2 and 10).
Anyway, mom was asleep when I arrived so I said hello and she squinted her eyes tightly shut and smiled. I opened her eyes and she was bright and alert and focused!! I said, “Good Morning, Morning Glory!” and she mouthed, “Morning!” with a big smile. She watched my face and paid attention as I talked to her. Her CNA said that, even though it is shower day and she was ready to shower mom, she’d wait until I finished mom’s physical therapy/range of motion exercise first. Mom’s CNA is such a doll. As I began PT, I asked mom, “So are you ready to exercise now?!!” and she mouthed, “Yes” and shook her head, “Yes” too!! I began by telling her to stretch her fingers open and she DID IT on the right hand!!! Then I began to stretch mom’s fingers. As I do this, I sing what we are doing, like: “Stretch your finger. Stretch your finger…” over and over and I count as we do this too. MOM COUNTED THE WHOLE TIME WE DID PT!!!!! which is about 28 times!!! She counted consistently and consecutively from 1 through 10!!!! Sometimes as I counted, I would stop and say, “OK what number comes next?” playfully and MOM KNEW!!!! She was counting with me!! I decided to see if she could move her legs on her own so I asked her to wiggle her toes. She did it on both feet but only slightly. I CHEERED for her!!! And I made a fuss and she smiled proudly! Then I put the 10 inch ball under her right leg and asked her to lift her leg and waited. Nothing. So I said, “Move your leg” over and over as I lifted it. Then I asked her to “think” hard about moving her leg—as I tapped her forehead and said, “Now you say it and think it mom, ‘Move my leg’” and she mouthed, “Move my leg” over and over and over again as I stood and watched her right leg on the ball…at first, it seemed like nothing was happening…but then, as I watched, I saw her big toe move slightly so I cheered her on, yelling, “You’re doing it!!! You’re doing it!!! Do it mom!! You can do it!! You can move your leg!!!” Slowly, she went from moving her big toe to moving her all her toes (ever so slightly---if you weren’t watching, you would think nothing was happening). Then she moved her foot ever so slightly and THEN…her foot lifted off the bed!!!! Millimeters at a time, but it was moving as she was mouthing, “move my leg” over and over and over again. And then she lifted her foot off the bed ½ an inch!!!! I took a picture of it on my cell phone!! I was screaming and cheering her on! And she was smiling and mouthing, “Move my leg” over and over. I showed her the command cards next that my friend, Maureen, made for her. She read each card…every word…but didn’t do any of the commands except “Wiggle your fingers” and “ shake your head no.” She was reading EVERYTHING in sight!! Looking all around and reading whatever print her eyes landed on. I asked her if she wanted to look at the family pictures and mom mouthed, “Yes” so I took out the pictures and showed her them one by one, asking her, “Who’s this?” with each one. The first picture was Dad’s and when I asked if this was Dad, she mouthed, “No” and frowned at me. So I said, “It’s not? Well, then, is it Jean?” and she smiled, relieved and mouthed, “Yes.” She named the next few people quickly, “Ava, Lenny, and Jean” but when I showed her Anthony, she mouthed, “Emil” (that’s John and Con’s brother). She mouthed, “Cucumber” for Anthony Michael (he loves cucumbers!!). She said, “Family” for all the other pictures. She looked out the window then and mouthed, “SNOW!” and I said, “Yes, there’s snow out there.” Then she looked out again and mouthed, “SMOKE.” (there was smoke out the window too). Next, I tried writing with her but rather than write much---she was veraciously reading all the print on the page!! She did, though, try to trace a few letters but couldn’t at all, and she marked on the white board largely. I showed her some of the pictures of body parts. She read the names of things but couldn’t tell me the names without reading them. I had to tell her to read the names when she didn’t know. However, when she came to the picture of the bare feet, she mouthed, “No shoes?” Aunt Lucy called next on the phone and talked to mom. While mom listened, mom looked at me smiling and mouthed, “She remembers me” and then she mouthed, “Aunt Lucy.” She left for her shower next and when she returned, her CNA said that mom was talking up a storm in the shower to her, but she didn’t understand what mom was saying. As the CNAs dressed mom, she talked a lot to them and they were squealing with delight over it! The 2 CNAs said that they wanted mom to pray for them to find “Good men like Mr. G. A man who is committed to the end and stand by your side always.”
Mom and I started to work in the wheelchair next and she looked at me and mouthed, “Kathy, thank you. Thank you so much for…me” I began to cry and said, “You’re welcome.” Then she mouthed, “I have to…I have to…I have to see dad.” I told her he was coming and she mouthed, “When?” I said he was on his way. We tried to do the nut and bolt but mom couldn’t do it, so I did it with her using hand over hand prompting. As we did this, I told her to think, “Turn…turn…turn…” and she mouthed it as we went through the motions. Mom did reach for the nut and bolt (attached together) with her left hand!! Then, once she grabbed them in both her hands, she twisted them perhaps 1/8 or ¼ way around!!! Next, we did the large, plastic buttons and the soup container with the slot in the top. Mom has to put the button in the slot. Mom and I did the first button using hand over hand prompting. The second button, mom reached for and tried to raise her hand to the container but couldn’t so I moved it toward her hand with the button. The third button, mom reached for and moved to the slot in the container and RELEASED it into the container!! She did it again a 4th time alone! Mom
mouthed, “I need an air tube” twice. I told mom, “I love you” and she mouthed back, “I love you too.” She began to get sleepy then and so I let her rest a bit. Mom began to cough and then took my hand and I said, “What?” she mouthed back, “I’m coughing.” I reassured her. We did the IPAD next and listened to songs on the IPOD mode of the IPAD. Mom was mouthing a lot of the words. Then Anthony and Con came and Anthony had her laughing immediately!! Hysterically!!! They told her that Samantha is taking “Dorothy” as her Confirmation name. Mom read the, “All About Me” book with Anthony and Con. As we showed her each page, we asked her to read the pages but she didn’t ---but the next thing we knew, she was telling us what was on the pages without looking at them!!! She had the book memorized!! Anthony said, “Guess it’s time for a new book, huh?” and mom cracked up laughing!! They did her full physical therapy/range of motion exercises too.
Anthony called later in the afternoon to say that the results of urine sample showed an e-coli infection to be treated with antibiotics for 10 days starting tonight at 6:00 p.m. Dad said that they couldn't get the drug mom was prescribed but he complained about it and they found some in the reserves at the facility until more arrives. They did the chest x-ray - no results yet.
Anthony said that they did hand over hand sewing with the sewing card...mom held both ends and tried to do it herself but could not really do it and stopped. They looked at Carmine's pictures but she began to fall asleep when Dad came. Then she was changed and she woke up! Donna and Tom came. She stayed awake and talked whole time. Tom told mom jokes and she laughed really hard at them. The nurse even commented on how awake and alert and interactive mom was. Anthony and Con did physical therapy again before they left.
JoAnn and I visited with mom tonight and we just sat and talked to her. When we first arrived, JoAnn said, "Hi! WOW! You look great!" and mom mouthed back, "Thank you I feel great." She frequently talked back to us. At one point, she told us, “I have to tell you both something.” Her nurses were so excited to see that she is talking to them (mouthing words and phrases...). I tucked her in and prayed with her and then we left.
I will hold this day so close to my heart for so long....it was truly a gift from God. Amen.
"How can we thank God enough for you in return for all the joy we have in the presence of our God because of you?" 1 Thessalonians 3:9
Friday, February 4, 2011
Mom Update, February 4, 2011, Friday
Claudia started the day with mom today. She said that mom was out like a light and extremely sleepy today. She opened mom's eyes and mom kept them open for a short time and Claudia handed mom the soft, textured red, 6 inch ball and mom actually stretched out her fingers to try to put them around the ball. Mom couldn't do it all the way but tried to!!! This is great!! It indicates purposeful movement and also shows memory retention!! Mom fell asleep again then and stayed that way even through physical therapy/range of motion exercises!!
Dad called yesterday to say that the neurologist’s office called and said that mom’s latest EEG came back the same as in October—no changes. This is a good thing.
When I arrived to see mom today, she was fast asleep; but I was told by the nurse that she had been wide awake between the time Claudia was with her and when I arrived. Figures!! Haha!! I noticed Wednesday both times I saw her and today, that she is breathing above the vent nicely while she sleeps though. Mom was in the big recreation room when I came. Sometimes, they put people there so they can watch them better (an aide is with them the whole time---1 aide per 5-6 patients). Mom was in her wheelchair and both arms were dangling straight down off the sides of the chair (pins and needles…circulation…swelling…). No one cares or pays attention. As I lifted mom’s arms back up onto her lap, I noticed that the mitt on her right hand was almost off her hand!! Her right hand is her strong hand---I don’t know if she managed to wiggle it off or if it was never on correctly. I asked the aide in the room and she had no idea, so I went to the nurse’s station and reported it. I asked them to move mom back to her room with me (not easy with the vent in tow but whatever—they had the big TV on in the room and some disturbing murder show was on…they tend to watch these shows or hospital shows when the patients are in there---go figure!). Once we were in mom’s room, I tried to wake her more than several times but couldn’t…so I figured she needed the sleep and let her sleep for a while. I brought work with me – so the time was well spent anyway. At times, as mom slept, she would raise her left arm and her hand would shake and she’d make a scrunched up face…a dream? Pain? Stretching? Who knows. She always settles back down comfortably within minutes or seconds. I also noticed that if I spoke aloud, she would give a slight smile. At one point, after I had been with mom for a little over 2 hours, I stood to lift her left arm back on the chair again (I had been doing this on and off during my visit) and mom felt really warm and clammy…very sweaty. I told the respiratory therapist and she alerted mom’s nurse. In the meantime, the respiratory therapist checked mom’s heart rate (she said it was a little high for mom) and her pulse with the cuff on mom’s index finger. The nurse arrived and took mom’s blood pressure 132 over 63…all good there. She said she’d send the physician’s assistant in to see mom. I also asked her if mom’s temperature could be taken. She said OK but didn’t do it. The respiratory therapist and I chatted as she recorded information on mom’s respiratory chart. She just gave me a look when the nurse left the room and commented, “Good thing you asked for the temperature” and then I told the respiratory person that mom is being introduced to food orally by mouth. The respiratory person said she didn’t know that and thanks for telling her. God help us!!! Two weeks on a food trial and everyone doesn’t know!!! Mom’s male nurse came to take her blood sugar – it was good. The physician’s assistant came to see mom and listened to her breathing through the stethoscope and said he’d be back to tell me how they’d proceed after her temperature and blood sugar was taken. The head of respiratory and the pulmonologist came to see mom and they said she looked stable but the head of respiratory said again that the limiting factor in mom’s further weaning from the vent was the fact that, when she sleeps, she does not consistently breathe above the vent. He wants her to do that. He said that when he comes to see her at 6:30-7:00 a.m. (she is his first stop in the morning), he wants to see her breathing above the vent and she isn’t always doing that. Mom had been breathing over the vent nicely 18-23 and the vent on 10 before the head respiratory therapist and the pulmonologist came to see her but no sooner did they arrive, and the head respiratory therapist spoke about how mom’s numbers would go back down to 10 and it did. The power of words. Please pray for mom’s breathing again. Prayer works. The nurse who initially came to take mom’s blood pressure finally came to take her temperature and it was 100.9 under the arm and then 100.6 rectally. The physician’s assistant ordered blood work and a chest x-ray. The x-ray will show if there is aspiration or pneumonia. Mom also had a urinalysis on the 1st and they are waiting for the results still. They will give
her Tylenol soon. She was wet and sweaty for an hour and a half. I prayed over her and anointed her with oil and she feels cooler now. Dad just arrived and is sitting beside mom holding her hand. Mom’s CNA asked to have mom looked at by the doctor too this morning because she noticed mom was making the grimacing face and shaking a lot again. The physician said it was not seizures (we knew this based on her EEG reports). We remembered that the physical therapist told us a while ago that when the brain makes connections with the body initially—the body shakes. Maybe this is what is happening. At 3:30, mom’s temperature was taken again (rectally) and it dropped to 99.7!! The power of prayer!! The head nurse told the CNA to be sure mom’s temperature is taken every 4 hours and that she gets Tylenol in a few minutes. The head nurse assisted in washing mom and changing her---she determined that although mom had 2 bowel movements already in the last 2 hours, she is constipated. They gave her something for it. Yesterday, Claudia said tht mom told her, “I have to go to the bathhhhrrooommm!” and Claudia told her to just go. She is becoming more aware of her bodily functions again. This is a good thing. As the afternoon progressed and it became evening, mom's temperature dropped to 98.9 then 98 at about 6 p.m. We took dad out to dinner and then to another movie. He enjoys coming with us. After dinner but before the movie Dad and I inquired about mom's chest x-ray and we were told it is being done first thing tomorrow morning. We checked mom and wen to the movie. At 10 p.m. when JoAnn and I checked in on mom, she was cool to the touch but grimacing a lot again...definitely some sort of discomfort. I asked the medication nurse to please give mom more tylenol. We sat with mom until almost 11:00 p.m. then I prayed over mom and anointed her again and tucked her in for the night.
Encourage one another daily, as long as it is called today...We have come to share in Christ if we hold firmly till the end the confidence we had at first. Hebrews 3:13-14
Dad called yesterday to say that the neurologist’s office called and said that mom’s latest EEG came back the same as in October—no changes. This is a good thing.
When I arrived to see mom today, she was fast asleep; but I was told by the nurse that she had been wide awake between the time Claudia was with her and when I arrived. Figures!! Haha!! I noticed Wednesday both times I saw her and today, that she is breathing above the vent nicely while she sleeps though. Mom was in the big recreation room when I came. Sometimes, they put people there so they can watch them better (an aide is with them the whole time---1 aide per 5-6 patients). Mom was in her wheelchair and both arms were dangling straight down off the sides of the chair (pins and needles…circulation…swelling…). No one cares or pays attention. As I lifted mom’s arms back up onto her lap, I noticed that the mitt on her right hand was almost off her hand!! Her right hand is her strong hand---I don’t know if she managed to wiggle it off or if it was never on correctly. I asked the aide in the room and she had no idea, so I went to the nurse’s station and reported it. I asked them to move mom back to her room with me (not easy with the vent in tow but whatever—they had the big TV on in the room and some disturbing murder show was on…they tend to watch these shows or hospital shows when the patients are in there---go figure!). Once we were in mom’s room, I tried to wake her more than several times but couldn’t…so I figured she needed the sleep and let her sleep for a while. I brought work with me – so the time was well spent anyway. At times, as mom slept, she would raise her left arm and her hand would shake and she’d make a scrunched up face…a dream? Pain? Stretching? Who knows. She always settles back down comfortably within minutes or seconds. I also noticed that if I spoke aloud, she would give a slight smile. At one point, after I had been with mom for a little over 2 hours, I stood to lift her left arm back on the chair again (I had been doing this on and off during my visit) and mom felt really warm and clammy…very sweaty. I told the respiratory therapist and she alerted mom’s nurse. In the meantime, the respiratory therapist checked mom’s heart rate (she said it was a little high for mom) and her pulse with the cuff on mom’s index finger. The nurse arrived and took mom’s blood pressure 132 over 63…all good there. She said she’d send the physician’s assistant in to see mom. I also asked her if mom’s temperature could be taken. She said OK but didn’t do it. The respiratory therapist and I chatted as she recorded information on mom’s respiratory chart. She just gave me a look when the nurse left the room and commented, “Good thing you asked for the temperature” and then I told the respiratory person that mom is being introduced to food orally by mouth. The respiratory person said she didn’t know that and thanks for telling her. God help us!!! Two weeks on a food trial and everyone doesn’t know!!! Mom’s male nurse came to take her blood sugar – it was good. The physician’s assistant came to see mom and listened to her breathing through the stethoscope and said he’d be back to tell me how they’d proceed after her temperature and blood sugar was taken. The head of respiratory and the pulmonologist came to see mom and they said she looked stable but the head of respiratory said again that the limiting factor in mom’s further weaning from the vent was the fact that, when she sleeps, she does not consistently breathe above the vent. He wants her to do that. He said that when he comes to see her at 6:30-7:00 a.m. (she is his first stop in the morning), he wants to see her breathing above the vent and she isn’t always doing that. Mom had been breathing over the vent nicely 18-23 and the vent on 10 before the head respiratory therapist and the pulmonologist came to see her but no sooner did they arrive, and the head respiratory therapist spoke about how mom’s numbers would go back down to 10 and it did. The power of words. Please pray for mom’s breathing again. Prayer works. The nurse who initially came to take mom’s blood pressure finally came to take her temperature and it was 100.9 under the arm and then 100.6 rectally. The physician’s assistant ordered blood work and a chest x-ray. The x-ray will show if there is aspiration or pneumonia. Mom also had a urinalysis on the 1st and they are waiting for the results still. They will give
her Tylenol soon. She was wet and sweaty for an hour and a half. I prayed over her and anointed her with oil and she feels cooler now. Dad just arrived and is sitting beside mom holding her hand. Mom’s CNA asked to have mom looked at by the doctor too this morning because she noticed mom was making the grimacing face and shaking a lot again. The physician said it was not seizures (we knew this based on her EEG reports). We remembered that the physical therapist told us a while ago that when the brain makes connections with the body initially—the body shakes. Maybe this is what is happening. At 3:30, mom’s temperature was taken again (rectally) and it dropped to 99.7!! The power of prayer!! The head nurse told the CNA to be sure mom’s temperature is taken every 4 hours and that she gets Tylenol in a few minutes. The head nurse assisted in washing mom and changing her---she determined that although mom had 2 bowel movements already in the last 2 hours, she is constipated. They gave her something for it. Yesterday, Claudia said tht mom told her, “I have to go to the bathhhhrrooommm!” and Claudia told her to just go. She is becoming more aware of her bodily functions again. This is a good thing. As the afternoon progressed and it became evening, mom's temperature dropped to 98.9 then 98 at about 6 p.m. We took dad out to dinner and then to another movie. He enjoys coming with us. After dinner but before the movie Dad and I inquired about mom's chest x-ray and we were told it is being done first thing tomorrow morning. We checked mom and wen to the movie. At 10 p.m. when JoAnn and I checked in on mom, she was cool to the touch but grimacing a lot again...definitely some sort of discomfort. I asked the medication nurse to please give mom more tylenol. We sat with mom until almost 11:00 p.m. then I prayed over mom and anointed her again and tucked her in for the night.
Encourage one another daily, as long as it is called today...We have come to share in Christ if we hold firmly till the end the confidence we had at first. Hebrews 3:13-14
Mom Update, February 3, 2011, Thursday
I give my sister credit for writing the blog every day. I am bleary eyed. I don't know how she does it every day! I hope I make sense.
I started the day with mom. I put her hearing aids in and put her glasses on. I washed her face and she opened her eyes and was wide awake right away. She was very "connected". She looked at my eyes and hung on every word I said. I spoke to her about my day and I told her I was going to St. Joe's today to do the student teacher seminar presentation. I then said and then guess where I am going? and she said, "Where?" I couldn't believe it. I did her PT and range of motion. She didn't wince when I stretched her right arm all the way up. I placed the ball under her leg and tried to get her to lift her leg. I showed the visual of her leg lifting as I gave the command. She wiggled her toes and moved her feet, but did not lift her leg. I thought it was an improvement for her to wiggle her leg. She was making a connection that I wanted her to do something with her leg. I showed her The Electric Company and she watched it intently. I packed up her Ipad and asked her if it was ok that I brought it to work to help one of the kids I work with. The district wants to buy him one. She nodded, "Yes." I told a joke to mom and her CNA and she laughed!
Anthony came in the morning and did full PT with mom (range of motion). He tried to get her to move her legs, but she wouldn't. He also tried to get her to cut. Mom was able to make 2 small cuts and then fell asleep. When she woke up she cut a little more. Anthony then worked with the sewing card. he held her hands and laughed a lot. She was in great spirits today! She fell asleep again and the speech therapist came in and said she had honey again and did well. The woman who arranges doctor appointments came in and said she is waiting to get back papers and date for the swallow test. She will be going to the hospital to have a modified barium swallow test. She said the test should be soon. She was shaking a lot today. Last time she was shaking (back when she was coming out of the coma), we were told that it was her brain making connections with her muscles - who knows? Anthony told her aid about the shaking and she said she would tell a nurse. Anthony did PT again at 1:30. When I arrived at mom's in the evening, Ava and Dad were there. Ava said she was in a great mood and hanging on every word she was saying. Ava told her all about her classes. Dad started to tell Ava the story about when mom and dad first met. Ava said that at one point mom put both her hands up as if to cut my dad short and say "Wait, I'll tell this part" then she spoke but Ava couldn't make it out. Ava asked mom to give her the pig she was holding and mom actually gave ehr the pig and let go. This is BIG! It is one of the first times I know of, that she released something. She can grab, but hasn't been able to let go (open her fingers), especially on command. Ava asked mom if Poppy was a hunk when he was young and mom nodded, "yes." I asked mom if Carmine came today and she said no. I looked on the window sill and his binder was there (he wanted to take it the next time he came). Dad and Ava left and I did her PT and then took out the ipad. We did many programs hand over hand (math, tangrams, piano, memory). I said a prayer with her and kissed her good night. It was a great day!
Peace and Love!
~Claud
I started the day with mom. I put her hearing aids in and put her glasses on. I washed her face and she opened her eyes and was wide awake right away. She was very "connected". She looked at my eyes and hung on every word I said. I spoke to her about my day and I told her I was going to St. Joe's today to do the student teacher seminar presentation. I then said and then guess where I am going? and she said, "Where?" I couldn't believe it. I did her PT and range of motion. She didn't wince when I stretched her right arm all the way up. I placed the ball under her leg and tried to get her to lift her leg. I showed the visual of her leg lifting as I gave the command. She wiggled her toes and moved her feet, but did not lift her leg. I thought it was an improvement for her to wiggle her leg. She was making a connection that I wanted her to do something with her leg. I showed her The Electric Company and she watched it intently. I packed up her Ipad and asked her if it was ok that I brought it to work to help one of the kids I work with. The district wants to buy him one. She nodded, "Yes." I told a joke to mom and her CNA and she laughed!
Anthony came in the morning and did full PT with mom (range of motion). He tried to get her to move her legs, but she wouldn't. He also tried to get her to cut. Mom was able to make 2 small cuts and then fell asleep. When she woke up she cut a little more. Anthony then worked with the sewing card. he held her hands and laughed a lot. She was in great spirits today! She fell asleep again and the speech therapist came in and said she had honey again and did well. The woman who arranges doctor appointments came in and said she is waiting to get back papers and date for the swallow test. She will be going to the hospital to have a modified barium swallow test. She said the test should be soon. She was shaking a lot today. Last time she was shaking (back when she was coming out of the coma), we were told that it was her brain making connections with her muscles - who knows? Anthony told her aid about the shaking and she said she would tell a nurse. Anthony did PT again at 1:30. When I arrived at mom's in the evening, Ava and Dad were there. Ava said she was in a great mood and hanging on every word she was saying. Ava told her all about her classes. Dad started to tell Ava the story about when mom and dad first met. Ava said that at one point mom put both her hands up as if to cut my dad short and say "Wait, I'll tell this part" then she spoke but Ava couldn't make it out. Ava asked mom to give her the pig she was holding and mom actually gave ehr the pig and let go. This is BIG! It is one of the first times I know of, that she released something. She can grab, but hasn't been able to let go (open her fingers), especially on command. Ava asked mom if Poppy was a hunk when he was young and mom nodded, "yes." I asked mom if Carmine came today and she said no. I looked on the window sill and his binder was there (he wanted to take it the next time he came). Dad and Ava left and I did her PT and then took out the ipad. We did many programs hand over hand (math, tangrams, piano, memory). I said a prayer with her and kissed her good night. It was a great day!
Peace and Love!
~Claud
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