Lenny and I began mom’s day with her this morning. Her CNA and nurse told us that she gave mom the wash cloth and asked her to wash her face and she did it!!! She also combed her hair alone too. Lenny, Claudia and I positioned her in her chair and sat her way up. Again, we asked the respiratory therapist to put the vent down and it was put on 8. When we all arrived, mom was forlorn looking but after the vent was lowered to 8, her eyes opened widely and she became much more animated!!! There appears to be a correlation of some sort between the vent setting and her alertness. Later in the day, when mom’s CO2 levels were taken, they were still good!! So the respiratory therapist decided to leave her on 8. She said that she is here tomorrow and would recommend a CPAP for mom now---this means OFF THE VENT!!!! Just to see how she’d do.
Anthony, Con, Anthony Michael, Sammy, and Ava all came to join the family fun too! We asked to have mom moved to the recreation room today and they moved her. We all had fun together there. Lenny gave mom the dry erase board and wrote “Hi” on the board, but mom wrote a capital “E” all on her own!!! Her nurse was in the room at the time and looked at it and said, “Oh don’t worry Mrs. G, it’s only a reflex!!” and mom laughed so hard!! The nurse said, “Hi” and mom said, “Oh my goodness!!” When Lenny arrived today, he said, “Hi Nonny” and Mom said, “Hi Lenny honey.” Anthony said, “I love you mom” and mom said she loves him back out loud. Mom sat and sewed on the sewing cards. Nonny said out of no were “rub my back’ so Anthony and Claudia went to rub it. Mom spoke over the vent (audibly) “Rub my back.” Con asked, “Do you want me to sing?” and mom said, “Yes” over and over (audibly). Con sang and she said something after that but we couldn’t understand her. Claudia wrote the word “Brooklyn” in script and mom read the word. I wrote her maiden name, “Cholewka” and she said, “Who is that?” (audibly). Debbie and Claudia were dancing and Anthony said, “Hey mom, look they are dancing” and mom said, “Who is?” Con and Ava were kidding around and Con hit Ava (kidding around – dramatically) and mom stared at Con with a mad look. She stared for a long time!
Mom and I went back to her room around 12:30 when everyone left. We did her physical therapy and she helped to do it too! She was able to open and close her hands on command (Stretching her fingers open)4-5 times alone!!! She also used her right hand to stretch the fingers on her left hand open all the way---independently!! Mom also tried to move her wrists (bend them at the joint) independently as well and did it 3-4 times on the right wrist only. Then, I showed mom how the physical therapist wanted her to clasp her fingers together and then move her arms up and down---she did it with by watching me model what to do!! She was able to lift her arms up and down 2-3 times independently while her fingers were clasped!! I set up the IPAD for her with the Tic Tac Toe game and she did really great with the game!! She knows what to do!! She doesn’t play to win yet---or if she does, she isn’t good at that yet---but she knows how to play the game independently!! After the Tic Tac Toe game, we tried the counting game and the writing game on the IPAD…mom did these for a little while but then stopped. I gave her the 3 wooden puzzles next—one at a time. We started with the farm puzzle---she put 6 of 8 pieces in INDEPENDENTLY!!! Next, we did the “under the ocean fish” puzzle, and mom put all 10 pieces in, this was followed by the vehicle puzzle and mom put all 8 pieces in alone!! For each puzzle, I didn’t really let mom sit long to figure out which pieces went where—I only gave it a 5-6 second wait time and then I pointed to where the pieces went and mom followed the direction to place specific pieces in specific places!! I gave her the MAZE coloring book with colored pencils next and she drew inside the lines of each maze. She also colored pictures in a coloring book with crayons for a while as well (she did both these activities for over an hour). The next thing mom did was sew with the sewing cards again.
Someone told me that it would be nice if mom got some mild virus and had to go to the hospital so that the hospital staff could get her off the vent!!!!! When dad came later in the day, mom smiled at him and told him, “I love you” after he said it to her. She also threw him a kiss too. Mom gave me and one of the nurses a “High 5” several times today. I put dad’s hat on her head and mom said, “I’m gonna kill you!” and laughed! When Claudia came at night, we showed her how mom did the puzzle earlier and Claudia began to goof around and get distracted and mom laughed and then she said, “Look what she’s doing!” Claudia had mom do the snap lock beads and she snapped and unsnapped several independently!! Claudia said that mom was in a great mood! They watched TV and chatted and laughed. Claudia gave mom the sketch pad and mom didn’t seem to want it so she gave her the dot-to-dot pad and she said that mom connected numbers in sequence but not entirely. For example, mom connected #1-2 then 11-12 then 7-8…her interest was peaked and she touched it and studied it…then she also traced over some of the lines that were part of the picture. Then she turned the page and traced more lines and then Claudia drew dots from 1-10 and mom lifted her pencil and connected 1-2, then lifted the pencil and connected 4-5… After a while, mom didn’t seem to want to do this so Claudia gave her magazines and mom flipped through the pages. Next, mom took one of her arm pillows and put it on her stomach and hugged it; so Claudia asked if that’s where she wanted it and mom grabbed it tighter. Then she seemed to be falling asleep but when Claudia turned down the lights, mom opened her eyes quickly and widely as if to let her know that she wasn’t ready to go to bed. They watched 5 episodes of MASH and 1 of Mary Tyler Moore---mom picked out which one she wanted to watch and made choices. Then mom got sleepy and Claudia dimmed the lights and tucked her in and mom’s mood seemed to change.
Earlier in the night, around 7:00 p.m., when Dad and I got ready to leave to go to a late dinner we said good bye. As I kissed mom’s forehead and told her I loved her, I asked her if she loved me too---earlier, when I left briefly to go to the store and asked mom if she loved me, she said, “No” and I laughed because I knew she wasn’t paying attention or thought not anyway. Dad had said, “What?!! What do you mean you don’t love Kathy? You love her don’t you?” and mom replied, “No” again. I just laughed and chalked it up to her being a “character” at times. Well, this time, when I asked her if she loved me and said good bye, she looked up into my eyes with a childish face and made the sign of the cross---not once but 3 times!!! As if trying to tell me something in an expectant way…She remembered that I pray with or over her every night before I leave her or come to check on her and she was asking to pray with me now!!!!! I began to cry and held her hand to pray as we do when she is awake at bedtime and mom closed her eyes tightly as I laid my free hand on her forehead and prayed with and over her…imparting the blessing I always do at night over her: “This is the day that the Lord has made. We will rejoice and be glad in it. Father we thank You for mom and for all that You are doing to heal her Lord and to restore her to full health again in memory, mind, spirit, cognition. And I pray, PEACE, SHALOM. All wholeness, completeness, fullness of health and healing and functionality. PEACE, SHALOM.”
“…the Lord is good...” Psalm 34:8
Sunday, October 31, 2010
Saturday, October 30, 2010
Mom Update, October 30, 2010, Saturday
I began mom’s day with her early this morning. She was asleep when I arrived but woke as I gently began her physical therapy. Lenny came and helped me with her PT. Then mom and Lenny did the tweezers and the pom poms in the small holes. Mom picked up 5 pom poms independently with the tweezers and put them in. Next, Lenny had mom open the clothespins and place them on the edge of a cup; then he had her remove them and put them away in the zip loc bag. Lenny also tries to teach mom how to zip the bag shut. Lenny found the MEGA BLOCKS (which are toddler sized LEGOS) and used those next with mom. (I think Lenny had more fun with them then mom!!!). Mom put 5 mega blocks together herself. Lenny had mom write on the dry erase board. He wrote with a blue marker and gave her a green one to write with. Usually mom makes random strokes or circles but today, she traced all the letters in the phrase, “Leave me alone!!!” all by herself!!!!!!!!
Something interesting happened today. After a conversation with one of the respiratory people about weaning mom, she put the vent on 6 (it was on 12) and when it went to 6, mom was breathing 14-19 breaths above the vent!!!!!!!!!! When it is on 12, she stays near 12 or 14 tops on her own without movement or laughing. Hmmmmm……how do we approach the “big headed” lead respiratory guy without implicating the wonderful, dedicated therapist who is helping us out????
I left and Lenny stayed with mom for a while. They played the SUPER WHY where she had to guess the sounds and spell words and write them. She did OK but really well with tracing over the letters and words. She and Lenny played Tic Tac Toe on the IPAD and Lenny actually lost once. Then they looked at the category cards of the VEGETABLES on the IPAD which shows big pictures and names the vegetable. Then she kept trying to clean the fingerprints on the IPAD (she's getting better!!). She and Lenny looked at pictures on the IPAD next of the family and he showed her a picture of him when he was 3 and mom gave him a big smile. When he had to go home, he told her, "I'm going now Nonny and I'll be back" and Mom said, "Yup, OK" and he told her he loved her and she told him the same thing.
Anthony, Anthony Michael, Sammy, Gina and Michael came to see mom next. They said that though mom was awake, she was mellow. They talked with mom, draw on the dry erase board, mom talked and said a few words and they hung out with her. They said that she was much more animated last night then today.
Phil saw mom today and she kissed him hello and smiled at him. He made her laugh a few times too.
Dad and Aunt Sophie and Terry found mom to be the same way today...mellow. Aunt Sophie goes home tomorrow.
"...whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things..." Philippians 4:8
Something interesting happened today. After a conversation with one of the respiratory people about weaning mom, she put the vent on 6 (it was on 12) and when it went to 6, mom was breathing 14-19 breaths above the vent!!!!!!!!!! When it is on 12, she stays near 12 or 14 tops on her own without movement or laughing. Hmmmmm……how do we approach the “big headed” lead respiratory guy without implicating the wonderful, dedicated therapist who is helping us out????
I left and Lenny stayed with mom for a while. They played the SUPER WHY where she had to guess the sounds and spell words and write them. She did OK but really well with tracing over the letters and words. She and Lenny played Tic Tac Toe on the IPAD and Lenny actually lost once. Then they looked at the category cards of the VEGETABLES on the IPAD which shows big pictures and names the vegetable. Then she kept trying to clean the fingerprints on the IPAD (she's getting better!!). She and Lenny looked at pictures on the IPAD next of the family and he showed her a picture of him when he was 3 and mom gave him a big smile. When he had to go home, he told her, "I'm going now Nonny and I'll be back" and Mom said, "Yup, OK" and he told her he loved her and she told him the same thing.
Anthony, Anthony Michael, Sammy, Gina and Michael came to see mom next. They said that though mom was awake, she was mellow. They talked with mom, draw on the dry erase board, mom talked and said a few words and they hung out with her. They said that she was much more animated last night then today.
Phil saw mom today and she kissed him hello and smiled at him. He made her laugh a few times too.
Dad and Aunt Sophie and Terry found mom to be the same way today...mellow. Aunt Sophie goes home tomorrow.
"...whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about such things..." Philippians 4:8
Friday, October 29, 2010
Mom Update, October 29, 2010, Friday
Claudia began mom's day with her. She found mom awake and alert when she arrived. They did her physical therapy. Claudia said, "Good Morning" to mom and mom mouthed, "Good morning" back so Claudia said, "Thanks for saying Good Morning Mom" and mom replied, "You're welcome." Then Claudia told mom that, "Ava won an American Express gift card in a contest last night." Mom asked, "For what?" Claudia said, "For her costume, first place" and mom replied "Good." Claudia also said that, when she was leaving, she asked mom if she wanted the TV on, and mom vehemently shook her head, “No” so she asked again a few times and received the same response. Claudia said, “OK then do you want a magazine to read?” and mom forcefully patted a cooking magazine. This is great news, that she was able to make a decision given a choice.
The nurses all tell us, and have done so from the start, that mom is their favorite person. That when they have a problem or need to talk or regroup, they run to her room and either talk to each other there—and include mom in the conversation—or they just run there to talk to mom. One of our favorite nurses came in to see mom tonight and told Anthony and Con all about how great mom is doing and how mom is their “girlfriend.”
When I saw mom today, we started out by using the IPAD to play Tic Tac Toe. Mom said, “Same” a few times and pointed to 2 that matched frequently. She was sometimes also able to make a choice on which spot she wanted to move to. We played this and took turns for a long while (35 minutes). Next, we tried the COUNTING game on the IPAD. Mom soon did this on her own!!! I hooked the IPAD into the CD player so I was able to raise the volume really high. This seemed to make a nice difference in mom’s motivation to manipulate the IPAD. She did the number game for 25 minutes independently. We tried the matching/concentration game next. Mom watched me do it first, then I did hand over hand assistance, then she managed to touch and move a few cards on her own. We tried the IPAD alphabet next…she didn’t know how to advance the letters at first, but she was able to follow my verbal direction along with a gesture to show her where to touch. Next, we looked at some e-books on the IPAD…I downloaded a few like “Toot and Puddle” which is a series on 2 little pigs (picture books with gorgeous illustrations), and also an autobiography of Paula Deen. Mom began to read the Paula Deen book, mouthing some of the words and scanning the page with her eyes.
We listened to music next while mom did some cutting with scissors. She made tiny snips with the scissors in a very concentrated way…we listened to classical music during this time. Mom became so relaxed after a while that she slowly fell asleep but not for long because Anthony came.
Anthony had mom laughing in no time. He and I had mom practice sitting all the way up and taking deep breaths. She seems so much better able to take deep breaths when she is sitting up straight. Just as I was leaving Anthony and mom, Flo came to see mom. Mom smiled at her as she walked in and said hi. Mom and Anthony started playing Tic Tac Toe and she was drawing circles and everything. Then the respiratory therapist and 2 other people came in—they commented on how well mom is doing and Anthony said, “No, she isn’t doing well.” And they became perplexed and said, “What do you mean?” Anthony then proceeded to tell them what the other therapists say about how mom hasn’t made any real progress since she is there. Then they began telling Anthony that there is absolutely nothing that we can do to help mom begin to breathe on her own. Anthony told them everything that has been said by all the therapists about how everything mom does is just reflexive. He even mentioned all the derogatory things they, themselves, say about mom to us. Mom’s attitude changed from being happy and laughing, to down and sad, after these 3 big shot therapists stood in front of mom and talked about how mom isn’t making any progress on the vent. What is wrong with people?!!!
After Anthony and Flo left, dad and Aunt Sophie came to see mom. Dad said that mom was awake and alert and happy to see them. He said that she smiled a lot and said a few words during their visit and that Aunt Sophie showed mom how to sew with the sewing card (Aunt Sophie is the seamstress on my mom’s side of the family).
Anthony, Con and Anthony Michael and Samantha came to be with mom all night tonight. Sammy wrote the words, “Samantha, Anthony, happy, and funny” on the dry erase board and mom read all the words. Sammy wrote other words too and mom read them as well. Sammy tried to have mom read some of the easy readers that I brought in for her to read, but mom wasn’t interested. It really seems like she is definitely reading. They all sat with mom and talked and laughed and had her do various activities. They did her physical therapy as well. They stayed with mom until she fell asleep and tucked her in for the night.
Despite what the therapists (who don’t feel like doing their job) say, mom is improving dramatically; and she continues to do so.
"Make my joy complete by being of the same mind, maintaining the same love, united in spirit, intent on one purpose." Philippians 2:2
The nurses all tell us, and have done so from the start, that mom is their favorite person. That when they have a problem or need to talk or regroup, they run to her room and either talk to each other there—and include mom in the conversation—or they just run there to talk to mom. One of our favorite nurses came in to see mom tonight and told Anthony and Con all about how great mom is doing and how mom is their “girlfriend.”
When I saw mom today, we started out by using the IPAD to play Tic Tac Toe. Mom said, “Same” a few times and pointed to 2 that matched frequently. She was sometimes also able to make a choice on which spot she wanted to move to. We played this and took turns for a long while (35 minutes). Next, we tried the COUNTING game on the IPAD. Mom soon did this on her own!!! I hooked the IPAD into the CD player so I was able to raise the volume really high. This seemed to make a nice difference in mom’s motivation to manipulate the IPAD. She did the number game for 25 minutes independently. We tried the matching/concentration game next. Mom watched me do it first, then I did hand over hand assistance, then she managed to touch and move a few cards on her own. We tried the IPAD alphabet next…she didn’t know how to advance the letters at first, but she was able to follow my verbal direction along with a gesture to show her where to touch. Next, we looked at some e-books on the IPAD…I downloaded a few like “Toot and Puddle” which is a series on 2 little pigs (picture books with gorgeous illustrations), and also an autobiography of Paula Deen. Mom began to read the Paula Deen book, mouthing some of the words and scanning the page with her eyes.
We listened to music next while mom did some cutting with scissors. She made tiny snips with the scissors in a very concentrated way…we listened to classical music during this time. Mom became so relaxed after a while that she slowly fell asleep but not for long because Anthony came.
Anthony had mom laughing in no time. He and I had mom practice sitting all the way up and taking deep breaths. She seems so much better able to take deep breaths when she is sitting up straight. Just as I was leaving Anthony and mom, Flo came to see mom. Mom smiled at her as she walked in and said hi. Mom and Anthony started playing Tic Tac Toe and she was drawing circles and everything. Then the respiratory therapist and 2 other people came in—they commented on how well mom is doing and Anthony said, “No, she isn’t doing well.” And they became perplexed and said, “What do you mean?” Anthony then proceeded to tell them what the other therapists say about how mom hasn’t made any real progress since she is there. Then they began telling Anthony that there is absolutely nothing that we can do to help mom begin to breathe on her own. Anthony told them everything that has been said by all the therapists about how everything mom does is just reflexive. He even mentioned all the derogatory things they, themselves, say about mom to us. Mom’s attitude changed from being happy and laughing, to down and sad, after these 3 big shot therapists stood in front of mom and talked about how mom isn’t making any progress on the vent. What is wrong with people?!!!
After Anthony and Flo left, dad and Aunt Sophie came to see mom. Dad said that mom was awake and alert and happy to see them. He said that she smiled a lot and said a few words during their visit and that Aunt Sophie showed mom how to sew with the sewing card (Aunt Sophie is the seamstress on my mom’s side of the family).
Anthony, Con and Anthony Michael and Samantha came to be with mom all night tonight. Sammy wrote the words, “Samantha, Anthony, happy, and funny” on the dry erase board and mom read all the words. Sammy wrote other words too and mom read them as well. Sammy tried to have mom read some of the easy readers that I brought in for her to read, but mom wasn’t interested. It really seems like she is definitely reading. They all sat with mom and talked and laughed and had her do various activities. They did her physical therapy as well. They stayed with mom until she fell asleep and tucked her in for the night.
Despite what the therapists (who don’t feel like doing their job) say, mom is improving dramatically; and she continues to do so.
"Make my joy complete by being of the same mind, maintaining the same love, united in spirit, intent on one purpose." Philippians 2:2
Thursday, October 28, 2010
Mom Update, October 28, 2010, Thursday
Mom went to the neurologist for her EEG this morning. I met her at the center early this morning before work so that I could be with her until they put her in the ambulance to transport her. I did her full physical therapy before leaving and got her ready to go. One of her and our favorite nurses took the ride with her in the ambulance. For this, we were thankful. Of course, this didn't go without a glitch...they originally told us to go to Bay Shore but we all ended up at the Patchogue office. Whatever. Anthony and Dad thought they had time so they went to mass but had to rush to get to the doctor's office in enough time for me to run to work. Mom did well this morning. She was very quiet with me though, but gave a few vague smiles here and there.
Dad and Anthony arrived just in time for me to fly to work. Dad went to the center after dropping off Anthony at home. He said that mom was sleeping so he stayed a while and then left. He was upset to find another letter regarding the MEDICAID application and needing MORE paperwork...........He gathered some already again.
When dad came back later in the afternoon, he said mom was wide awake and said, "Hi" "I love you" and "I'm OK" He said that she was trying on his hat and laughing and reading through magazines as well.
John went to see mom this afternoon and evening and said he had a ball with her! He did her full physical therapy They sewed with the sewing card and buttons and used they used the white board to write on and read words and draw. He also had her do some deep breathing as well. He read to her from the All About Me book and he asked where his picture was? She and John laughed alot. John put his and Con's picture into the book and mom thought that was funny too. John said that her arm hurt really badly and that she had trouble using it so we need to ask the doctor to look at it. John felt that she may have injured it in some way possibly.
Dad stayed later tonight and tucked mom into bed. Sounds like she had a productive and content day.
"You shall love your neighbor as yourself." Leviticus 19:18
Dad and Anthony arrived just in time for me to fly to work. Dad went to the center after dropping off Anthony at home. He said that mom was sleeping so he stayed a while and then left. He was upset to find another letter regarding the MEDICAID application and needing MORE paperwork...........He gathered some already again.
When dad came back later in the afternoon, he said mom was wide awake and said, "Hi" "I love you" and "I'm OK" He said that she was trying on his hat and laughing and reading through magazines as well.
John went to see mom this afternoon and evening and said he had a ball with her! He did her full physical therapy They sewed with the sewing card and buttons and used they used the white board to write on and read words and draw. He also had her do some deep breathing as well. He read to her from the All About Me book and he asked where his picture was? She and John laughed alot. John put his and Con's picture into the book and mom thought that was funny too. John said that her arm hurt really badly and that she had trouble using it so we need to ask the doctor to look at it. John felt that she may have injured it in some way possibly.
Dad stayed later tonight and tucked mom into bed. Sounds like she had a productive and content day.
"You shall love your neighbor as yourself." Leviticus 19:18
Wednesday, October 27, 2010
Mom Update, October 27, 2010, Wednesday
Claudia began mom’s day with her this morning. She said that mom was VERY sleepy. Mom was asleep when Claudia arrived and remained asleep throughout her physical therapy and washing her face, combing her hair… Claudia said mom woke slightly as she was leaving. She said mom’s eyes were very sticky and almost sealed shut.
Anthony arrived mid morning and stayed until dad and Aunt Sophie arrived. He said that mom was awake but very unresponsive. He said that he managed to get her to laugh a few times but only slightly. He said that she said something (but he didn’t understand what) about his hat, and he asked her if she wanted it and she said, “Yeah” and put it on her head and they laughed. But, he said that she was very unresponsive. ..didn’t want to do anything…even activities she enjoys. He gave her the sewing card and lace and she behaved as though she didn’t know what to do with it.
Dad and Aunt Sophie came to see mom in the early afternoon and dad said that she was wide awake and alert but really wouldn’t do too much. She played with the long orange tube trying to attach it together like a circle. She also did some pencil rubbing pictures as well. She briefly glanced through some magazines but that was all. but they played with Anthony's hat and she put it on her head and then they put it on dad's head and mom laughed and said, "That's too big!!"
Claudia saw mom next and said that mom was appeared to be very obstinate---didn’t want to do anything much. They did the snap lock beads together—hand over hand—mom wouldn’t or couldn’t do them alone. They also did the wooden fish puzzle together hand over hand. Claudia talked with mom and explained that we are just trying to help her get better and then mom followed the directions to place her thumb and pointer finger together. At first Claudia showed her and then did hand over hand help for mom to complete the task – 2 times. On the third attempt, mom then put her pointer finger on her thumb alone—independently. After 2 minutes, she then figured out how to move her pointer finger off her thumb and place her middle finger on her thumb. They also did "Sound at Home" and "Outdoor Sounds" CD with pictures and Claudia gave her one picture at a time and a pointer to point to the pictures Then mom did the pom poms using her right and left hands separately (she had a lot of difficulty using the left hand but did it!). Mom put the clothespins on the edge of the cup but hand over hand and managed to "flip the leap frogs" as well but it was hard for her to isolate one finger to do this. She tried the whistle and bubbles but wasn't able to create enough breath to make either one work.
I saw mom next and she was sitting in bed watching TV like "Queen for a Day!" She just looked so relaxed and content!! She sort of smiled at me when I said "Hi" but not really. She ignored me again. I didn't stay long because I had to run so I just talked to her but she still ignored me.
Dad and Aunt Sophie went back after dinner and Dad said that she was awake when they got there and held his hand as they watched TV. When he asked her how she was, she said, "I'm OK." The nurse said that she had been looking at magazines before they came. Dad said mom fell asleep so they left.
Peggy and I saw mom around 9:00 tonight. I tucked her in and shut the lights and we prayed over her. She was asleep when we arrived but it didn't appear to be soundly...so I wondered if she was faking again because she didn't want to see me!
"Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you." Luke 6:38
Anthony arrived mid morning and stayed until dad and Aunt Sophie arrived. He said that mom was awake but very unresponsive. He said that he managed to get her to laugh a few times but only slightly. He said that she said something (but he didn’t understand what) about his hat, and he asked her if she wanted it and she said, “Yeah” and put it on her head and they laughed. But, he said that she was very unresponsive. ..didn’t want to do anything…even activities she enjoys. He gave her the sewing card and lace and she behaved as though she didn’t know what to do with it.
Dad and Aunt Sophie came to see mom in the early afternoon and dad said that she was wide awake and alert but really wouldn’t do too much. She played with the long orange tube trying to attach it together like a circle. She also did some pencil rubbing pictures as well. She briefly glanced through some magazines but that was all. but they played with Anthony's hat and she put it on her head and then they put it on dad's head and mom laughed and said, "That's too big!!"
Claudia saw mom next and said that mom was appeared to be very obstinate---didn’t want to do anything much. They did the snap lock beads together—hand over hand—mom wouldn’t or couldn’t do them alone. They also did the wooden fish puzzle together hand over hand. Claudia talked with mom and explained that we are just trying to help her get better and then mom followed the directions to place her thumb and pointer finger together. At first Claudia showed her and then did hand over hand help for mom to complete the task – 2 times. On the third attempt, mom then put her pointer finger on her thumb alone—independently. After 2 minutes, she then figured out how to move her pointer finger off her thumb and place her middle finger on her thumb. They also did "Sound at Home" and "Outdoor Sounds" CD with pictures and Claudia gave her one picture at a time and a pointer to point to the pictures Then mom did the pom poms using her right and left hands separately (she had a lot of difficulty using the left hand but did it!). Mom put the clothespins on the edge of the cup but hand over hand and managed to "flip the leap frogs" as well but it was hard for her to isolate one finger to do this. She tried the whistle and bubbles but wasn't able to create enough breath to make either one work.
I saw mom next and she was sitting in bed watching TV like "Queen for a Day!" She just looked so relaxed and content!! She sort of smiled at me when I said "Hi" but not really. She ignored me again. I didn't stay long because I had to run so I just talked to her but she still ignored me.
Dad and Aunt Sophie went back after dinner and Dad said that she was awake when they got there and held his hand as they watched TV. When he asked her how she was, she said, "I'm OK." The nurse said that she had been looking at magazines before they came. Dad said mom fell asleep so they left.
Peggy and I saw mom around 9:00 tonight. I tucked her in and shut the lights and we prayed over her. She was asleep when we arrived but it didn't appear to be soundly...so I wondered if she was faking again because she didn't want to see me!
"Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you." Luke 6:38
Tuesday, October 26, 2010
Mom Update, October 26, 2010,Tuesday
When I arrived to start mom’s day today, she was already washed and dressed and sitting in her chair watching TV (The Food Channel). We did her full physical therapy together. Mom tried to do her hand movements (open and closed fist and her ankle movements). We tried the plastic leap frogs also—it was hard for mom to do but she tried. Next, we tried to read the action book---there are index cards with commands like, ‘touch nose’ …and mom followed the command to ‘touch ear’…she wouldn’t read today though. Next, mom and I completed the wooden farm puzzle…she resisted me (as usual)at first, but then put 4 pieces of the puzzle into the board. The next thing mom did was to pick up the large plastic buttons and put them into the slot in the top of a plastic container. She was able to put 15 buttons into the container independently. I showed her how to lay the container sideways in order to see the hole better and I also showed her how to hold the container with her left hand while placing the buttons into the container with her right hand. Then we stood the container on the table and she placed buttons in. We did the peg board and pegs next. Mom put about 3 of 10 pegs into the board independently. She pulled them all out alone and put them in the open bag as I held it. Mom put 3 nuts and bolts together and also took them apart.We tried coloring and blowing in the whistles but Mom wasn’t interested. She didn’t want any magazines either. Mom took a break and rested for a few minutes, then I put on her Classical and Romance CD while she did a pencil rubbing on the “magic” paper that makes a picture as you rub.
Dad and Aunt Sophie came to see mom just after lunchtime. Dad said that mom tried to take a few deep breaths with him. They said that mom didn’t feel like doing anything at all and she fell asleep for a while. When she woke, she just sat and didn’t do anything. When the CNA took her temperature in the middle of the afternoon, it was 99.7. I hope she isn’t getting sick. Dad said that mom looked sad when he and Aunt Sophie left her.
I went back to see mom late in the afternoon and she was in bed again, sleeping but not soundly or deeply. She opened her eyes when I put the blanket on her. I did her full physical therapy and left. Dad came back to visit mom just after dinner with Aunt Sophie, Con, Anthony Michael, and Michael (Rie and Phil’s son). They said that mom didn’t feel like doing anything and that she was asleep when they arrived but woke up as they did her physical therapy. They said they just hung out with her quietly and she eventually fell asleep again. I came back with Lenny around 9:30 p.m. She was tilted all the way into the left side bed rail---GOOD THING WE HAVE THE BED RAILS UP!!!! She had moved around quite a bit after Dad, Con, Anthony Michael, Michael, and Aunt Sophie left her tonight. We tucked her in, moved her back to the center of the bed, and said prayers.
Maybe it is time to rest.
"in ripening time and in harvest you shall rest." Exodus 24:31
Dad and Aunt Sophie came to see mom just after lunchtime. Dad said that mom tried to take a few deep breaths with him. They said that mom didn’t feel like doing anything at all and she fell asleep for a while. When she woke, she just sat and didn’t do anything. When the CNA took her temperature in the middle of the afternoon, it was 99.7. I hope she isn’t getting sick. Dad said that mom looked sad when he and Aunt Sophie left her.
I went back to see mom late in the afternoon and she was in bed again, sleeping but not soundly or deeply. She opened her eyes when I put the blanket on her. I did her full physical therapy and left. Dad came back to visit mom just after dinner with Aunt Sophie, Con, Anthony Michael, and Michael (Rie and Phil’s son). They said that mom didn’t feel like doing anything and that she was asleep when they arrived but woke up as they did her physical therapy. They said they just hung out with her quietly and she eventually fell asleep again. I came back with Lenny around 9:30 p.m. She was tilted all the way into the left side bed rail---GOOD THING WE HAVE THE BED RAILS UP!!!! She had moved around quite a bit after Dad, Con, Anthony Michael, Michael, and Aunt Sophie left her tonight. We tucked her in, moved her back to the center of the bed, and said prayers.
Maybe it is time to rest.
"in ripening time and in harvest you shall rest." Exodus 24:31
Monday, October 25, 2010
Mom Update, October 25, 2010, Monday
Claudia and I are going to Canada next Tuesday-Saturday (November 2-6) because I am presenting my research work at the Geneva Centre International Autism Symposium. We will need people to come visit mom and work on her tasks and activities in our absence. Anyone who can come visit would be much appreciated.
Claudia saw mom this morning and mom was sound asleep. She did her physical therapy, had her suctioned, cleaned her up and mom woke up. Claudia was nervous that mom was sleeping at first because the physical therapist was coming to do therapy with her this morning…supposedly at 7:30. Of course, the guy didn’t show!!! Are we surprised???!!!!! He said that he won’t start to work with mom until 8 a.m. He came at 7:55 a.m. Mom cut on a line for him. He wasn’t impressed. She snapped all the pop beads and unsnapped them in front of him. He wasn’t impressed. He said, “Good Morning” to mom, she mouthed it back but he had turned away from her so he didn’t see it. When Claudia pointed this out to him, he said he doesn’t believe that she can talk. Claudia later found the CNAs and nurses who work with mom and told them to go tell the therapist that mom talks to them all the time---they said she does and continue to tell us how remarkable her progress is all the time. Claudia told the therapist that she has problems with how he does therapy…she said that all he ever does is ASSESS ability and not TEACH anything. As an example, Claudia said to the therapist, “Give me the fergurgle” He looked at her oddly. So she asked again and again. Then she said, “How are you ever going to learn what a fergurgle is unless I stop assessing whether or not you know what it is and TEACH YOU?!!” She said they need to use physical and verbal cuing and prompting, full manual prompts, partial manual prompts, fading… She told him that all they ever do is give a command to assess whether or not mom understands something and if she doesn’t, then they discontinue the service. She told him that whatever tasks and materials he brought to work with mom, he needs to remember that he has to teach them first. Claudia also told him that unless you are working with her muscles in her body that are damaged the brain pathways will never reopen and regenerate. They never heard of the MOVE curriculum which focuses on getting the body to move again so that the brain will work again.
Anthony saw mom late morning into the early afternoon. He said that she was wide awake and alert and happy to see him. They played with the clothespins…mom placed some on the edge of a cup. They also used the clothespins to pick up the pom poms and place in a container. Next, Anthony asked mom if she wanted to play Tic Tac Toe and she said, “Yes” so he drew the board and made the first move with an X. He asked her where she wanted to go and, at first, she only drew tiny lines on the paper. Anthony redirected her and asked her where she wanted to go and she pointed and he drew the O where she wanted it. This is similar to what mom does with Lenny when they work on the IPAD together…usually, mom takes Lenny’s finger and uses it as a pointer to complete activities. Anthony said that, by the last move, mom made her own O on the board---close to the spot it should be in but covering many spots at once---too large. Then mom did some sewing on the sewing cards while she and Anthony talked. Anthony said he made her laugh a lot today again. He also said that she talked a lot today—though sometimes too low to hear and other times, only mouthing without repeating what she’d said. Anthony said that mom told him, “I love you” audibly.
We are all using the vent as a “Laugh Meter”---there is a number that shows how much mom is breathing above the vent---we use that number to determine who got the biggest laugh out of mom (which means who was able to get her to take the biggest breath!). Claudia, Lenny and I hold the record at 25!!!
Dad, Aunt Sophie, and Aunt Carol visited mom this afternoon and night. She played with the clothespins, and drew with the pencil on the magic paper that Claudia bought for her (you rub your pencil on the paper and a picture appears). She also sewed with the sewing cards again. Dad said that mom talked a lot but he only remembered her saying, “Stop it” when he tickled her feet and “I love you.”
I was the last person to visit mom tonight. She was sitting in bed wide eyed and looking so lovely...her hair looked great and her face looked so pure. She was all tucked in nicely and her pillows were set up so comfortably...she looked cozy and snug. She looked cute sitting there amongst her pillows with her stuffed animal piggies! Mom loves to be "cozy." My friend, Maureen, gave me more items and activities that she put together for mom. Tonight, we used a long, orange crinkled tube that expands and contracts by pushing and pulling it that Maureen sent for mom. We accidentally stumbled upon a new use for it though...instead of using it for fine motor development, mom put one end to her mouth and I told her it was a "talking tube" and that she had to tell me something through the tube. I put the other end to my ear and mom clearly said, "I love you" then I told mom a "secret" through the "talking tube" and visa versa. We did this for quite some time. Mom said, "Bubbles" "I love you" "My name is..." "Katherine Louise" and "Gilman" through the "talking tube!" We tried to blow some bubbles but to no avail...though mom did try to blow them!! She was taking deep breaths while I was with her too. Maureen sent some whistles for mom and she and I spent some time blowing those too. Mom was almost able to blow enough to make a sound!
I tucked her in, gave her some stuffed animals to hold, dimmed the lights, and said some prayers with mom. I gave her the remote and left the TV on a 2 hour timer.
Another day that mom was awake!!! No sleepy days in 10 days!!!
"But I will restore you to health and heal your wounds,' declares the LORD" Jeremiah 30:17
Claudia saw mom this morning and mom was sound asleep. She did her physical therapy, had her suctioned, cleaned her up and mom woke up. Claudia was nervous that mom was sleeping at first because the physical therapist was coming to do therapy with her this morning…supposedly at 7:30. Of course, the guy didn’t show!!! Are we surprised???!!!!! He said that he won’t start to work with mom until 8 a.m. He came at 7:55 a.m. Mom cut on a line for him. He wasn’t impressed. She snapped all the pop beads and unsnapped them in front of him. He wasn’t impressed. He said, “Good Morning” to mom, she mouthed it back but he had turned away from her so he didn’t see it. When Claudia pointed this out to him, he said he doesn’t believe that she can talk. Claudia later found the CNAs and nurses who work with mom and told them to go tell the therapist that mom talks to them all the time---they said she does and continue to tell us how remarkable her progress is all the time. Claudia told the therapist that she has problems with how he does therapy…she said that all he ever does is ASSESS ability and not TEACH anything. As an example, Claudia said to the therapist, “Give me the fergurgle” He looked at her oddly. So she asked again and again. Then she said, “How are you ever going to learn what a fergurgle is unless I stop assessing whether or not you know what it is and TEACH YOU?!!” She said they need to use physical and verbal cuing and prompting, full manual prompts, partial manual prompts, fading… She told him that all they ever do is give a command to assess whether or not mom understands something and if she doesn’t, then they discontinue the service. She told him that whatever tasks and materials he brought to work with mom, he needs to remember that he has to teach them first. Claudia also told him that unless you are working with her muscles in her body that are damaged the brain pathways will never reopen and regenerate. They never heard of the MOVE curriculum which focuses on getting the body to move again so that the brain will work again.
Anthony saw mom late morning into the early afternoon. He said that she was wide awake and alert and happy to see him. They played with the clothespins…mom placed some on the edge of a cup. They also used the clothespins to pick up the pom poms and place in a container. Next, Anthony asked mom if she wanted to play Tic Tac Toe and she said, “Yes” so he drew the board and made the first move with an X. He asked her where she wanted to go and, at first, she only drew tiny lines on the paper. Anthony redirected her and asked her where she wanted to go and she pointed and he drew the O where she wanted it. This is similar to what mom does with Lenny when they work on the IPAD together…usually, mom takes Lenny’s finger and uses it as a pointer to complete activities. Anthony said that, by the last move, mom made her own O on the board---close to the spot it should be in but covering many spots at once---too large. Then mom did some sewing on the sewing cards while she and Anthony talked. Anthony said he made her laugh a lot today again. He also said that she talked a lot today—though sometimes too low to hear and other times, only mouthing without repeating what she’d said. Anthony said that mom told him, “I love you” audibly.
We are all using the vent as a “Laugh Meter”---there is a number that shows how much mom is breathing above the vent---we use that number to determine who got the biggest laugh out of mom (which means who was able to get her to take the biggest breath!). Claudia, Lenny and I hold the record at 25!!!
Dad, Aunt Sophie, and Aunt Carol visited mom this afternoon and night. She played with the clothespins, and drew with the pencil on the magic paper that Claudia bought for her (you rub your pencil on the paper and a picture appears). She also sewed with the sewing cards again. Dad said that mom talked a lot but he only remembered her saying, “Stop it” when he tickled her feet and “I love you.”
I was the last person to visit mom tonight. She was sitting in bed wide eyed and looking so lovely...her hair looked great and her face looked so pure. She was all tucked in nicely and her pillows were set up so comfortably...she looked cozy and snug. She looked cute sitting there amongst her pillows with her stuffed animal piggies! Mom loves to be "cozy." My friend, Maureen, gave me more items and activities that she put together for mom. Tonight, we used a long, orange crinkled tube that expands and contracts by pushing and pulling it that Maureen sent for mom. We accidentally stumbled upon a new use for it though...instead of using it for fine motor development, mom put one end to her mouth and I told her it was a "talking tube" and that she had to tell me something through the tube. I put the other end to my ear and mom clearly said, "I love you" then I told mom a "secret" through the "talking tube" and visa versa. We did this for quite some time. Mom said, "Bubbles" "I love you" "My name is..." "Katherine Louise" and "Gilman" through the "talking tube!" We tried to blow some bubbles but to no avail...though mom did try to blow them!! She was taking deep breaths while I was with her too. Maureen sent some whistles for mom and she and I spent some time blowing those too. Mom was almost able to blow enough to make a sound!
I tucked her in, gave her some stuffed animals to hold, dimmed the lights, and said some prayers with mom. I gave her the remote and left the TV on a 2 hour timer.
Another day that mom was awake!!! No sleepy days in 10 days!!!
"But I will restore you to health and heal your wounds,' declares the LORD" Jeremiah 30:17
Sunday, October 24, 2010
Mom Update, October 24, 2010, Sunday
I started mom’s day with her this morning. I found her leaning to the right side of the bed almost into a pillow. I straightened her out, which took a while, and then she combed her hair. I did her full physical therapy, and as I did, she tried to assist me by either moving her arm a bit or hand, or by lifting the blankets so that I could manipulate her legs for her. We began to read her “All About Me” book. She mouthed the words after much prompting to do so. The CNAs came to dress and wash her finally.
Lenny came and began to work on the IPAD with mom. He tried Super-Reader word games. One of the games involves reading a sentence with a word missing, another he tried has to do with finding a rhyme, and finally, he played one with a matching game (matching animal pictures). Mom participated but half-heartedly. Lenny tried to work on a wooden puzzle with her next, but she wasn’t interested. They watched TV for a few minutes until Claudia arrived.
Claudia brought something new---large paper clips—oversized. Then mom placed3 on the edge of a piece of cardboard. Claudia tried the snap lock beads with mom. She struggled with them yesterday but today she pushed 3 together and unsnapped about 6 all independently. We took some other video footage as well. We practiced sitting up independently and mom was able to sit unaided for a few seconds!!!! She held the arm of the chair to support herself at one point too. She also tried to move her leg but only managed to move her foot at the ankle.
Anthony, Con, Anthony Michael, and Sammy and dad came to join us next. Sammy sat and sewed with the lacing cards with mom together. Mom sewed on the card and was able to make a knot again. Mom spent a lot of time sewing with Sam. She seems to love to sew. She used to do embroidery and tatting and crewel years ago.
We all played Family Feud with the nerf guns! Mom is getting really good at it. We promised to make her a few targets of various people here who she doesn’t like! Haha! There’s a gun that works like a fan that shoots a disc. Mom gets trigger happy with it and won’t let go of the trigger. Anthony said, “We’ll show them ‘functional’ – we’re gonna bring in some fruit and you can put it into this thing so you can make smoothies for them!!” Mom laughed so hard! The kids and mom had fun playing with the nerf guns.
At times, it seems as though mom’s cognitive ability outmatches her ability to express herself. After Anthony, Con and the kids left, Claudia and Dad did the “Sounds at Home” listening game but Claudia had the idea to take pictures of items in mom and dad’s home to use as the pictures in the game. Claudia tried the clothespins again but instead of using the edge of the cup, she used the edge of a long small picture easel.
Mom used the scissors to cut lines on pieces of construction paper for a while next. She did really well. She was even able to cut a CIRCLE today!!! Independently! Her problem solving ability was amazing to watch. As she tried to problem solve how to turn the paper in her left hand in order to continue to cut with her right hand, she did what looked like the equivalent of a “physical stutter” (similar to when someone stutters verbally). She put the scissor close to the paper without touching it, then moved it away and then back again and she repeated this process over and over until she finally decided to tear a small piece of excess paper off in order to leave room for the scissor to work freely and unobscured. We tried a triangle and mom took a while to cut it without making a mistake. She went off the line a few times and tried really hard to plan how to get back on it. It took her quite a while….14 minutes but she did eventually get back on and finish the cut. Her perseverance is amazing…especially for small, fine motor tasks like cutting and sewing. Her motor planning fascinated me during this process. She tried to snip tiny pieces of paper from the edge of the excess piece of paper in order to work her way into the middle of the paper where the line to cut was. As she cut, we played a CD that had music by Strauss, Tchaikovsky, Puccini, Chopin and Cremieux; a mix of waltzes and romance. What appeared to confuse mom as she cut shapes like the triangle, is that the lines of the shape didn’t touch the edge of the page…so she had to plan where on the edge to begin the task so that she could eventually meet the line.
I left to go home for a couple of hours and dad said that mom and he looked at magazines and talked while I was gone. He said that, as he talked, she would comment with, “Yup” or “No.” Dad and I went to dinner and Claudia returned to be with mom tonight and to tuck her in later on. She said that, at one point, as mom slept, she looked like she began to become upset and started to cry as she slept---while this is sad for mom to be distressed, it is also encouraging. According to the books I’ve read on strokes, many people do not dream for a long while until the brain heals to a point where it is once again capable of dreaming.
Mom and Claudia played with a “magic” paper from the toy store…you scratch at the paper with a pencil and a picture appears. Mom did that for a long time. They also watched MASH together and laughed at many of the jokes. Claudia had her I-Touch and mom reached over and took it out of her hand. Claudia put the VEGETABLE program on and mom traced the vegetables with the pencil. She would look up and watch TV and then draw again. As Claudia did physical therapy on her feet, mom giggled. She tucked mom in and shut the lights and put the timer on the TV.
Day 9 in a row that mom is awake and alert during the day!!!
"Know therefore that the Lord you God is God; He is the faithful God, keeping His Covenant of love to a thousand generations of those who love Him and keep His commands" Deuteronomy 7:9
Lenny came and began to work on the IPAD with mom. He tried Super-Reader word games. One of the games involves reading a sentence with a word missing, another he tried has to do with finding a rhyme, and finally, he played one with a matching game (matching animal pictures). Mom participated but half-heartedly. Lenny tried to work on a wooden puzzle with her next, but she wasn’t interested. They watched TV for a few minutes until Claudia arrived.
Claudia brought something new---large paper clips—oversized. Then mom placed3 on the edge of a piece of cardboard. Claudia tried the snap lock beads with mom. She struggled with them yesterday but today she pushed 3 together and unsnapped about 6 all independently. We took some other video footage as well. We practiced sitting up independently and mom was able to sit unaided for a few seconds!!!! She held the arm of the chair to support herself at one point too. She also tried to move her leg but only managed to move her foot at the ankle.
Anthony, Con, Anthony Michael, and Sammy and dad came to join us next. Sammy sat and sewed with the lacing cards with mom together. Mom sewed on the card and was able to make a knot again. Mom spent a lot of time sewing with Sam. She seems to love to sew. She used to do embroidery and tatting and crewel years ago.
We all played Family Feud with the nerf guns! Mom is getting really good at it. We promised to make her a few targets of various people here who she doesn’t like! Haha! There’s a gun that works like a fan that shoots a disc. Mom gets trigger happy with it and won’t let go of the trigger. Anthony said, “We’ll show them ‘functional’ – we’re gonna bring in some fruit and you can put it into this thing so you can make smoothies for them!!” Mom laughed so hard! The kids and mom had fun playing with the nerf guns.
At times, it seems as though mom’s cognitive ability outmatches her ability to express herself. After Anthony, Con and the kids left, Claudia and Dad did the “Sounds at Home” listening game but Claudia had the idea to take pictures of items in mom and dad’s home to use as the pictures in the game. Claudia tried the clothespins again but instead of using the edge of the cup, she used the edge of a long small picture easel.
Mom used the scissors to cut lines on pieces of construction paper for a while next. She did really well. She was even able to cut a CIRCLE today!!! Independently! Her problem solving ability was amazing to watch. As she tried to problem solve how to turn the paper in her left hand in order to continue to cut with her right hand, she did what looked like the equivalent of a “physical stutter” (similar to when someone stutters verbally). She put the scissor close to the paper without touching it, then moved it away and then back again and she repeated this process over and over until she finally decided to tear a small piece of excess paper off in order to leave room for the scissor to work freely and unobscured. We tried a triangle and mom took a while to cut it without making a mistake. She went off the line a few times and tried really hard to plan how to get back on it. It took her quite a while….14 minutes but she did eventually get back on and finish the cut. Her perseverance is amazing…especially for small, fine motor tasks like cutting and sewing. Her motor planning fascinated me during this process. She tried to snip tiny pieces of paper from the edge of the excess piece of paper in order to work her way into the middle of the paper where the line to cut was. As she cut, we played a CD that had music by Strauss, Tchaikovsky, Puccini, Chopin and Cremieux; a mix of waltzes and romance. What appeared to confuse mom as she cut shapes like the triangle, is that the lines of the shape didn’t touch the edge of the page…so she had to plan where on the edge to begin the task so that she could eventually meet the line.
I left to go home for a couple of hours and dad said that mom and he looked at magazines and talked while I was gone. He said that, as he talked, she would comment with, “Yup” or “No.” Dad and I went to dinner and Claudia returned to be with mom tonight and to tuck her in later on. She said that, at one point, as mom slept, she looked like she began to become upset and started to cry as she slept---while this is sad for mom to be distressed, it is also encouraging. According to the books I’ve read on strokes, many people do not dream for a long while until the brain heals to a point where it is once again capable of dreaming.
Mom and Claudia played with a “magic” paper from the toy store…you scratch at the paper with a pencil and a picture appears. Mom did that for a long time. They also watched MASH together and laughed at many of the jokes. Claudia had her I-Touch and mom reached over and took it out of her hand. Claudia put the VEGETABLE program on and mom traced the vegetables with the pencil. She would look up and watch TV and then draw again. As Claudia did physical therapy on her feet, mom giggled. She tucked mom in and shut the lights and put the timer on the TV.
Day 9 in a row that mom is awake and alert during the day!!!
"Know therefore that the Lord you God is God; He is the faithful God, keeping His Covenant of love to a thousand generations of those who love Him and keep His commands" Deuteronomy 7:9
Saturday, October 23, 2010
Mom Update, October 23, 2010, Saturday
Claudia and I both started mom’s day off together early this morning. We gave mom her comb and she combed her hair independently (right side only but top, back and bottom). Claudia did her full physical therapy. Claudia’s morning routine with mom begins with mom reading her, “All About Me” book. You could tell by watching mom’s eyes that she tracked each line in the book, but wouldn’t read out loud or mouth the words either. Next, mom did the nuts and bolts. She was able to screw 3 together alone. Mom tried sewing next and she did a great job!! She was able to put the lace through the hole from the top and then grab it from underneath and feed the lace back up to the top from underneath!!! (Claudia and I videotaped her doing these things – on the QT of course). Mom sewed for a long while. We tried the wooden puzzles next. She appeared either confused or bored with this activity but we continued it with a lot of modeling and hand over hand assistance. We spent some time doing the “snap-lock” beads with mom next. After a lot of assistance, modeling, and verbal prompts, mom was able to push one of the beads into the other and, if we held one end of a chain of beads and she held the other, she was able to pull 3 or 4 beads apart. We also showed her a visual prompt during this activity as well---we wrote the word ‘PULL’ on a small piece of paper and showed it to her. After she saw the direction in writing, she seemed to be able to complete the activity better.
Claudia left and, while the CNAs dressed and washed mom and moved her to her chair, I went to TARGET for more goodies. I bought mom a new “Olivia” pig stuffed animal. Mom loves pigs. I also bought a few Olivia story books, some bubbles (for her to blow so that she can improve her breathing). The respiratory therapist who came in this morning said that we should encourage mom to take deep breaths, or to laugh a lot (it has the same effect), or to talk. She said that the vent is doing most of mom’s breathing right now. She pointed out that mom is making great gains and that the gains vary according to the person. She reminded us of a patient who had no family members involved in his recovery from a stroke. This man was on a vent, in a coma…just like mom. After a year, he was off the vent and breathing on his own. Yesterday, the head of respiratory and the lung/pulminologist came to see mom and said that they had hoped mom would be breathing more on her own by now, but that she is making vast cognitive gains. Everyone is hopeful that mom will get off the vent soon---it is just going to take time.
Mom and I read some Olivia books and then dad came. Mom worked on cutting with scissors next. She was able to cut on a straight vertical line. She also made many random vertical cuts across the page and cut the paper in many pieces. I tried to see if she could cut a circle and she made it about 1/6 of the way around. Dad and I played with a new toy I bought her today, a gun that shoots round discs…she pulled the trigger and we ran to catch the discs. She seemed to like this. I tried the bubbles next. Terry had just arrived. She loved the bubbles…but the type I found were cheap…not very good. They were the only kind that TARGET had…in the party favor section. Mom tried many times to blow bubbles (she couldn’t, and the bubble wand didn’t hold the bubble soap very well either). I will buy more some place else to try with her.
Well, Terry is the family artist, so she took out the crayons and coloring books and tried to color with mom. She did well with this…coloring for more than 1 hour and 10 minutes. Mom actually tried to color in the lines and was able to do so. Next, Terry and mom strung some large, flat, wooden beads shaped like fruits. Terry helped her by holding 4 beads and mom put the lace through them. Dad and Terry then did the wooden barbecue puzzle with mom. This one has wooden tongs and knife, along with wooden skewers and pieces of food for shishkabob! Peppers, onions, beef, tomato, shrimp… I wrote on the dry erase board, “Put the onions on the stick” and mom did it. We transitioned to reading for a short while using the dry erase board. She read, “Therese Marie” then “Put the onions on the barbecue” (it actually said stick not barbecue), then she read, “Pop has a big nose.”
Anthony and Con came to join us all. Mom began to smile a lot as soon as she saw Anthony. She used her new nerf gun to shoot darts for a while. Anthony and Con sat and talked with mom for a while. Of course, he had mom laughing a lot!! Mom reached for Con’s lips and she said, “Oh you like my lipstick?” but Anthony said, “No Con, she thinks you should shave!” Mom went hysterical laughing!
We had mom try to blow a tissue…Anthony had her taking a deep breath. She tried to talk to Anthony and Con too. She mouthed a lot of sentences—some were intelligible but some weren’t. She was trying to lift her leg independently…managed to wiggle her foot, bend at the ankle. While I did her physical therapy, Anthony said, “Hey, while Kathy does your PT, you can do mine!” Mom laughed.
We all sat and watched TV with her and talked. Mom said, “Leave me alone” “I’m tired” and a few other things…audibly. When we left mom to go to dinner, she kissed dad. He told her he loves her and she said, "I love you too" then she took his hand in hers and kissed it over and over. When I kissed mom good-bye, she kissed me back. I told her I'd be back to see her later tonight and she said, "Don't rush" --- hmmm.....that could be taken any one of a number of ways!!! hahahah!!!
Lenny and I came back to tuck mom in...she was asleep but woke as we began to pray over her. The 3 of us prayed together and she fell back to sleep.
Day 8 in a row that mom is awake and alert!!!
"Gladness and joy will overtake them, and sorrow and sighing will flee away." Isaiah 35:10
Claudia left and, while the CNAs dressed and washed mom and moved her to her chair, I went to TARGET for more goodies. I bought mom a new “Olivia” pig stuffed animal. Mom loves pigs. I also bought a few Olivia story books, some bubbles (for her to blow so that she can improve her breathing). The respiratory therapist who came in this morning said that we should encourage mom to take deep breaths, or to laugh a lot (it has the same effect), or to talk. She said that the vent is doing most of mom’s breathing right now. She pointed out that mom is making great gains and that the gains vary according to the person. She reminded us of a patient who had no family members involved in his recovery from a stroke. This man was on a vent, in a coma…just like mom. After a year, he was off the vent and breathing on his own. Yesterday, the head of respiratory and the lung/pulminologist came to see mom and said that they had hoped mom would be breathing more on her own by now, but that she is making vast cognitive gains. Everyone is hopeful that mom will get off the vent soon---it is just going to take time.
Mom and I read some Olivia books and then dad came. Mom worked on cutting with scissors next. She was able to cut on a straight vertical line. She also made many random vertical cuts across the page and cut the paper in many pieces. I tried to see if she could cut a circle and she made it about 1/6 of the way around. Dad and I played with a new toy I bought her today, a gun that shoots round discs…she pulled the trigger and we ran to catch the discs. She seemed to like this. I tried the bubbles next. Terry had just arrived. She loved the bubbles…but the type I found were cheap…not very good. They were the only kind that TARGET had…in the party favor section. Mom tried many times to blow bubbles (she couldn’t, and the bubble wand didn’t hold the bubble soap very well either). I will buy more some place else to try with her.
Well, Terry is the family artist, so she took out the crayons and coloring books and tried to color with mom. She did well with this…coloring for more than 1 hour and 10 minutes. Mom actually tried to color in the lines and was able to do so. Next, Terry and mom strung some large, flat, wooden beads shaped like fruits. Terry helped her by holding 4 beads and mom put the lace through them. Dad and Terry then did the wooden barbecue puzzle with mom. This one has wooden tongs and knife, along with wooden skewers and pieces of food for shishkabob! Peppers, onions, beef, tomato, shrimp… I wrote on the dry erase board, “Put the onions on the stick” and mom did it. We transitioned to reading for a short while using the dry erase board. She read, “Therese Marie” then “Put the onions on the barbecue” (it actually said stick not barbecue), then she read, “Pop has a big nose.”
Anthony and Con came to join us all. Mom began to smile a lot as soon as she saw Anthony. She used her new nerf gun to shoot darts for a while. Anthony and Con sat and talked with mom for a while. Of course, he had mom laughing a lot!! Mom reached for Con’s lips and she said, “Oh you like my lipstick?” but Anthony said, “No Con, she thinks you should shave!” Mom went hysterical laughing!
We had mom try to blow a tissue…Anthony had her taking a deep breath. She tried to talk to Anthony and Con too. She mouthed a lot of sentences—some were intelligible but some weren’t. She was trying to lift her leg independently…managed to wiggle her foot, bend at the ankle. While I did her physical therapy, Anthony said, “Hey, while Kathy does your PT, you can do mine!” Mom laughed.
We all sat and watched TV with her and talked. Mom said, “Leave me alone” “I’m tired” and a few other things…audibly. When we left mom to go to dinner, she kissed dad. He told her he loves her and she said, "I love you too" then she took his hand in hers and kissed it over and over. When I kissed mom good-bye, she kissed me back. I told her I'd be back to see her later tonight and she said, "Don't rush" --- hmmm.....that could be taken any one of a number of ways!!! hahahah!!!
Lenny and I came back to tuck mom in...she was asleep but woke as we began to pray over her. The 3 of us prayed together and she fell back to sleep.
Day 8 in a row that mom is awake and alert!!!
"Gladness and joy will overtake them, and sorrow and sighing will flee away." Isaiah 35:10
Friday, October 22, 2010
Mom Update, October 22, 2010, Friday
I saw mom early this morning and began her day. She combed her own hair while I did her physical therapy. She also helped me do her physical therapy---she opened and closed the fingers on her right hand and left hand (albeit slowly). Mom wiggled her toes on her right foot during physical therapy too. She was also able to move her right arm 2 times during therapy. I asked mom to think about her ankle as I touched it, and then I asked her to move it the way we do in therapy---I did it for her once, then I asked her to do it. And she did so twice!!!!!
After the CNAs dressed her, I did the pegs and pegboard with mom. She put 4 pegs into the board alone and removed6 alone. I did hand over hand prompting to put 6 more in and take them out. She was able to follow the command to put 5 in the box and we did hand over hand for the rest.
Next, we did clothespins on the rim of the cup. Mom was able to squeeze and place 8 of the 12 clothespins on the rim of the cup alone!! The other 4 needed hand over hand prompting. During the placement of the 8, I continually talked to her and told her what to do or modeled it with another clothespin. She was able to take 5 of the 12 off the rim of the cup and place them into the cup again---without prompting and independently. Sometimes, it appears that either mom’s attention wanes and she forgets what she is doing and supposed to do, while other times it appears that she gets bored with the task and variates it to her liking. But, in any event, it is hard to determine which of these options are operating at any given time.
Mom took a brief nap after this. When she woke up, we did some mega blocks (these are huge toddler-sized legos). She resisted me at first, but after explaining to her again that everything we do with her is in an effort for her to get better, she cooperated. She put together16 blocks independently. Then she rearranged them and put some together over and over again. As mom worked on these blocks, one of the people from the physical/occupational therapy department came in to tell me that he had spent “some time” with mom on Wednesday or Thursday because the doctor of the facility felt that mom needed to receive therapies again. This male therapist told me that he didn’t see any consistency or improvement in mom’s progress. I decided to play the role of dumb brunette rather than doctor of literacy or special education teacher. I asked what the requirement was to receive therapy. I asked if, in order to receive therapy, mom had to be able to accomplish tasks and follow commands on her own. He said of course not. I then asked why mom didn’t receive therapy any more??? I asked him after he spewed forth more of his nonsensical B.S. whether he could really look me in the eye and tell me that mom shows no improvement from the time she arrived at the facility to now.
The tragedy that exists is that people who end up in a skilled nursing facility are left there to basically rot and, hopefully (in the opinion of the health care system of today) die. No one cares. The respiratory therapists, who come into the room to suction mom’s trach, suction her as though they are unclogging a stopped up toilet. They don’t even announce their presence when she is asleep and oftentimes just come in and roughly suction her, much to her sleeping surprise. She is jolted awake by the intrusive manner in which some respiratory therapist suctioned her. This morning, as I stood by mom’s bedside talking to her and doing her physical therapy, some respiratory therapist came into the room and began to suction her---without so much as a hello, or God forbid, an explanation of what she was about to do.
When Anthony arrived, I filled him in on the happenings of the morning and he and I went down to the therapy office to get to the bottom of the “no more therapy” issue. Anthony took charge of the situation and helped me express our viewpoints. They kept talking about how the brain has to rewire itself in order to make actions happen. Anthony asked how that can happen without help. He asked if she was just going to wake up one day and magically function all on her own. I jumped in at that point and pointed out that the neuroplasticity of the brain needs a bombardment of stimulation and movement in order to open new pathways and that we needed to be giving mom a bombardment of therapy NOW. They insisted that she has not made consistent progress and never answered Anthony’s question about how to get better with no therapy. Bottom line…after passionately and a bit angrily speaking to 2 of the physical therapists and the head nurse, we got mom’s physical and occupational therapies back for 2-3 weeks. The physical therapist is going to work on helping mom to be able to sit unsupported and also move her legs more than she does now.
We were making mom laugh soooo hard!! We gave her the nerf gun and we had a target practice. We told her to watch where she was shooting. Anthony said, “Oh sure, it’s all fun and games until someone gets hurt!” and she laughed so hard!!! Anthony bent over and said, “Here’s a big target” and mom laughed hard again. She laughed so hard with the gun that she began to make her vent go bizerk! Anthony told her to shoot the corn off her toe next and she laughed hard again. The head of speech came in to see us and knocked on the door before entering—I told mom, “Ditch the gun, the head of speech is here” and when he walked in cautiously confused, we all laughed hard again. We basically laughed all afternoon---one thing after another.
Anthony and mom looked at magazines and talked while I wrote all this up. The head of the speech department (who looked so young Anthony said we should have proofed him! Haha!), asked for an update on mom’s progress in the area of speech. I updated him—telling him that I felt that mom’s cognition far exceeds her ability to express herself—or so it appears. He asked if I thought speech therapy would help mom---Lord in heaven, people, professional people, never cease to amaze me!! What a question to ask. Does he think there are some people who would not benefit from therapy??? Does he feel there are some people who are not human enough to warrant trying to make their lives better?? Some of you reading this may not understand that speech therapy does not only include an ability to talk…there’s more to it. There is an ability to understand spoken language, written language, drawings, pictures, gestures, facial expression, body language… and, on the other side, there is the ability to convey thoughts, ideas, and needs through the exact same measures…writing, speaking, drawing, gesturing, facial expression, body language, pointing…so if you were to ask me if speech therapy would help someone…anyone…my answer is an empirical ‘Yes.’
Mom and I are sitting her now that she has just been moved back into bed, and we are listening to the soundtrack of “Out of Africa”---so majestic---but amongst the buzzing and beeping of numerous ventilators…an odd combination of sounds indeed. I thought I’d let mom rest a bit (her eyes are closed, but she’s squinting which is usually a sign that she isn’t really asleep). We are sitting beside each other, my head resting on her arm, holding hands…listening together in this strange place life has taken us… and I think about, while I am so blessed to be here with mom, how much, at the same time, I miss her.
Dad and Aunt Carol came just as mom awoke from a short nap and I was getting ready to go home. They said that they watched TV and chatted with mom and that she was awake but quiet.
I just got back from tucking mom in and praying over her. She was sound asleep.
This was the 7th day in a row that mom stayed awake all day!!!
"Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, "The LORD has done great things for them." Psalm 126:2
After the CNAs dressed her, I did the pegs and pegboard with mom. She put 4 pegs into the board alone and removed6 alone. I did hand over hand prompting to put 6 more in and take them out. She was able to follow the command to put 5 in the box and we did hand over hand for the rest.
Next, we did clothespins on the rim of the cup. Mom was able to squeeze and place 8 of the 12 clothespins on the rim of the cup alone!! The other 4 needed hand over hand prompting. During the placement of the 8, I continually talked to her and told her what to do or modeled it with another clothespin. She was able to take 5 of the 12 off the rim of the cup and place them into the cup again---without prompting and independently. Sometimes, it appears that either mom’s attention wanes and she forgets what she is doing and supposed to do, while other times it appears that she gets bored with the task and variates it to her liking. But, in any event, it is hard to determine which of these options are operating at any given time.
Mom took a brief nap after this. When she woke up, we did some mega blocks (these are huge toddler-sized legos). She resisted me at first, but after explaining to her again that everything we do with her is in an effort for her to get better, she cooperated. She put together16 blocks independently. Then she rearranged them and put some together over and over again. As mom worked on these blocks, one of the people from the physical/occupational therapy department came in to tell me that he had spent “some time” with mom on Wednesday or Thursday because the doctor of the facility felt that mom needed to receive therapies again. This male therapist told me that he didn’t see any consistency or improvement in mom’s progress. I decided to play the role of dumb brunette rather than doctor of literacy or special education teacher. I asked what the requirement was to receive therapy. I asked if, in order to receive therapy, mom had to be able to accomplish tasks and follow commands on her own. He said of course not. I then asked why mom didn’t receive therapy any more??? I asked him after he spewed forth more of his nonsensical B.S. whether he could really look me in the eye and tell me that mom shows no improvement from the time she arrived at the facility to now.
The tragedy that exists is that people who end up in a skilled nursing facility are left there to basically rot and, hopefully (in the opinion of the health care system of today) die. No one cares. The respiratory therapists, who come into the room to suction mom’s trach, suction her as though they are unclogging a stopped up toilet. They don’t even announce their presence when she is asleep and oftentimes just come in and roughly suction her, much to her sleeping surprise. She is jolted awake by the intrusive manner in which some respiratory therapist suctioned her. This morning, as I stood by mom’s bedside talking to her and doing her physical therapy, some respiratory therapist came into the room and began to suction her---without so much as a hello, or God forbid, an explanation of what she was about to do.
When Anthony arrived, I filled him in on the happenings of the morning and he and I went down to the therapy office to get to the bottom of the “no more therapy” issue. Anthony took charge of the situation and helped me express our viewpoints. They kept talking about how the brain has to rewire itself in order to make actions happen. Anthony asked how that can happen without help. He asked if she was just going to wake up one day and magically function all on her own. I jumped in at that point and pointed out that the neuroplasticity of the brain needs a bombardment of stimulation and movement in order to open new pathways and that we needed to be giving mom a bombardment of therapy NOW. They insisted that she has not made consistent progress and never answered Anthony’s question about how to get better with no therapy. Bottom line…after passionately and a bit angrily speaking to 2 of the physical therapists and the head nurse, we got mom’s physical and occupational therapies back for 2-3 weeks. The physical therapist is going to work on helping mom to be able to sit unsupported and also move her legs more than she does now.
We were making mom laugh soooo hard!! We gave her the nerf gun and we had a target practice. We told her to watch where she was shooting. Anthony said, “Oh sure, it’s all fun and games until someone gets hurt!” and she laughed so hard!!! Anthony bent over and said, “Here’s a big target” and mom laughed hard again. She laughed so hard with the gun that she began to make her vent go bizerk! Anthony told her to shoot the corn off her toe next and she laughed hard again. The head of speech came in to see us and knocked on the door before entering—I told mom, “Ditch the gun, the head of speech is here” and when he walked in cautiously confused, we all laughed hard again. We basically laughed all afternoon---one thing after another.
Anthony and mom looked at magazines and talked while I wrote all this up. The head of the speech department (who looked so young Anthony said we should have proofed him! Haha!), asked for an update on mom’s progress in the area of speech. I updated him—telling him that I felt that mom’s cognition far exceeds her ability to express herself—or so it appears. He asked if I thought speech therapy would help mom---Lord in heaven, people, professional people, never cease to amaze me!! What a question to ask. Does he think there are some people who would not benefit from therapy??? Does he feel there are some people who are not human enough to warrant trying to make their lives better?? Some of you reading this may not understand that speech therapy does not only include an ability to talk…there’s more to it. There is an ability to understand spoken language, written language, drawings, pictures, gestures, facial expression, body language… and, on the other side, there is the ability to convey thoughts, ideas, and needs through the exact same measures…writing, speaking, drawing, gesturing, facial expression, body language, pointing…so if you were to ask me if speech therapy would help someone…anyone…my answer is an empirical ‘Yes.’
Mom and I are sitting her now that she has just been moved back into bed, and we are listening to the soundtrack of “Out of Africa”---so majestic---but amongst the buzzing and beeping of numerous ventilators…an odd combination of sounds indeed. I thought I’d let mom rest a bit (her eyes are closed, but she’s squinting which is usually a sign that she isn’t really asleep). We are sitting beside each other, my head resting on her arm, holding hands…listening together in this strange place life has taken us… and I think about, while I am so blessed to be here with mom, how much, at the same time, I miss her.
Dad and Aunt Carol came just as mom awoke from a short nap and I was getting ready to go home. They said that they watched TV and chatted with mom and that she was awake but quiet.
I just got back from tucking mom in and praying over her. She was sound asleep.
This was the 7th day in a row that mom stayed awake all day!!!
"Our mouths were filled with laughter, our tongues with songs of joy. Then it was said among the nations, "The LORD has done great things for them." Psalm 126:2
Thursday, October 21, 2010
Mom Update, October 21, 2010, Thursday
Claudia started mom's day...she was wide awake and bright eyed!!! 6th straight day in a row that she is awake and alert during the day!!! Claudia did her physical therapy. She did the pegs and pegboard with Claudia but she stacked the pegs (4 high). She cut paper with scissors with Claudia. She also did some sewing with the sewing cards and strung 3 beads.
Anthony said that, when he saw mom today, mom was alert and awake. He said he tried to do games and activities with her but said that she didn't seem interested. He asked him if she wanted to look at magazines and she did want to so they sat there and looked at magazines together and talked. She indicated that she wanted the pen so he gave it to her and she made random marks in the magazines too. She used to circle items she wanted in the magazines. He said that she said, "Yup" out loud and also "I love you" as well.
Dad arrived while Anthony was there and they both talked to mom and watched TV.
John spent the afternoon and evening with mom and said that, when he arrived, she was sleepy and asleep. He did her physical therapy and she woke up and managed to follow some directions he gave her like lift your arm, give me your hand... Dad came back tonight too.
"You have shown me the way of life, and you will fill me with the joy of your presence.'" Acts 2:28
Anthony said that, when he saw mom today, mom was alert and awake. He said he tried to do games and activities with her but said that she didn't seem interested. He asked him if she wanted to look at magazines and she did want to so they sat there and looked at magazines together and talked. She indicated that she wanted the pen so he gave it to her and she made random marks in the magazines too. She used to circle items she wanted in the magazines. He said that she said, "Yup" out loud and also "I love you" as well.
Dad arrived while Anthony was there and they both talked to mom and watched TV.
John spent the afternoon and evening with mom and said that, when he arrived, she was sleepy and asleep. He did her physical therapy and she woke up and managed to follow some directions he gave her like lift your arm, give me your hand... Dad came back tonight too.
"You have shown me the way of life, and you will fill me with the joy of your presence.'" Acts 2:28
Wednesday, October 20, 2010
Mom Update, October 20, 2010, Wednesday
Claudia began the day with mom early. Mom was really happy to see her, smiling. She was awake and bright eyes. They tried to do the sewing cards but mom was playing with the card and trying to run the card in the ridges on the bed tray instead of sewing. Claudia showed her the All About Me book and they read it together and mom actually read it by mouthing and whispering the words. They did the buttons in the hole of the container but mom kept trying to open the container instead. With the nuts and bolts, it seemed like mom was confused or wanted to explore with them. While Claudia did her physical therapy mom said out loud to her when Claudia exercised her arm, "Hey, watch it! You're gonna break it!!!" CLaudia laughed and said, "I'm not gonna break it...I'll be gentle but we have to exercise it." They also did the clothespins along the lip of the smaller container too. Claudia left mom with 2 magazines on the bed tray -- Better Homes and Gardens and Family Circle. Mom was looking at the Family Circle one when Claudia left her.
About 1/2 hour after Claudia left, I came to see mom. She was thumbing through the Better Homes and Garden magazine at that point...licking her finger and deftly thumbing through it one page at a time. She was tilted to the left side of the bed so I straightened her out. She wouldn't look at me, talk to me...she was mad at me again! I tried several activities with her to no avail...I was finally able to engage her in writing on the dry erase board. She was able to draw in the lines of a blocked out letter 'I' by making the vertical line and then most of the line at the top. I left mom with books on the bed tray and also with her rolling tray next to the bed with other items within right arm's reach.
Claudia said that mom was dressed and sitting in bed and looking at the Clifford book I left for her when she arrived again. Claudia made mom do pom poms with her left hand. Then they did the tweezers with her right hand. Claudia limits this to only 3 of each task to show mom there is an end...because gets impatient. Claudia wants to also end in a success rather than in a fight and defeat. She uses her left hand for gross tasks like putting on her glasses... but struggles with more refined tasks. She talked to Claudia this morning. She played a lot and explored the materials rather than using them in a traditional way today. We aren't sure if she was in an exploratory mood or confused.
Dad saw mom in the afternoon and said that he and mom looked through magazines and that mom was using the lacing card. He said she appeared either depressed or mad at him too and wouldn't look at him or acknowledge him or talk to him.
Dad came back tonight to see mom with Con, Anthony Michael and Samantha. They did her physical therapy and Sammy read two books to mom but Con said that, although mom's eyes were open, she appeared tired. By the time they left, mom had fallen asleep.
Lenny and I swung by mom later tonight. Lenny went inside to tuck her in, pray, and turn out the lights and TV. Mom was sound asleep.
I made a mistake, Mom's EEG is not tomorrow but on October 28, next Thursday. Mom has been alert and awake during the day for 6 days in a row now!!!
"Taste and see that the LORD is good; blessed is the man who takes refuge in him" Psalm 34:8
About 1/2 hour after Claudia left, I came to see mom. She was thumbing through the Better Homes and Garden magazine at that point...licking her finger and deftly thumbing through it one page at a time. She was tilted to the left side of the bed so I straightened her out. She wouldn't look at me, talk to me...she was mad at me again! I tried several activities with her to no avail...I was finally able to engage her in writing on the dry erase board. She was able to draw in the lines of a blocked out letter 'I' by making the vertical line and then most of the line at the top. I left mom with books on the bed tray and also with her rolling tray next to the bed with other items within right arm's reach.
Claudia said that mom was dressed and sitting in bed and looking at the Clifford book I left for her when she arrived again. Claudia made mom do pom poms with her left hand. Then they did the tweezers with her right hand. Claudia limits this to only 3 of each task to show mom there is an end...because gets impatient. Claudia wants to also end in a success rather than in a fight and defeat. She uses her left hand for gross tasks like putting on her glasses... but struggles with more refined tasks. She talked to Claudia this morning. She played a lot and explored the materials rather than using them in a traditional way today. We aren't sure if she was in an exploratory mood or confused.
Dad saw mom in the afternoon and said that he and mom looked through magazines and that mom was using the lacing card. He said she appeared either depressed or mad at him too and wouldn't look at him or acknowledge him or talk to him.
Dad came back tonight to see mom with Con, Anthony Michael and Samantha. They did her physical therapy and Sammy read two books to mom but Con said that, although mom's eyes were open, she appeared tired. By the time they left, mom had fallen asleep.
Lenny and I swung by mom later tonight. Lenny went inside to tuck her in, pray, and turn out the lights and TV. Mom was sound asleep.
I made a mistake, Mom's EEG is not tomorrow but on October 28, next Thursday. Mom has been alert and awake during the day for 6 days in a row now!!!
"Taste and see that the LORD is good; blessed is the man who takes refuge in him" Psalm 34:8
Tuesday, October 19, 2010
Mom Update, October 19, 2010, Tuesday
Mom was wide awake and in a smiley happy great mood when Claudia arrived there early this morning; she said that mom even appeared to be happy to see her. Claudia did PT and mom let Claud do it without fighting her. She even helped Claudia with her physical therapy to a degree as well. Claudia had Mom do scissors and cutting and she reported that mom tried to figure out how to open the scissors and get them back in the channel to cut the rest of the line when she realized that she didn't finish cutting it...Mom swatted Claud’s hand away when Claud offered help and managed to figure it out herself. Did sewing with the big plastic buttons—not lacing but sewing. Then Claudia tried to have her slide the buttons in the hole but mom keeps trying to open the container instead. Hey, it's much easier that way!!! Claudia showed mom the book she made her and read it to her. Claudia left the animal boxes (plastic colored boxes that are square and have animal features on them...you open them up and a small plastic, attached animal is inside that you push or shake to make noise) and the book she made her, along with the buttons and lace for sewing.
Anthony went with dad to see mom late this morning and she was awake and fine. They did her physical therapy. They gave her the LTD catalog and a piece of paper and a pen and she went through the catalog and wrote on the paper as if ordering stuff but what she wrote was not legible. They watched TV and talked. Then they had a birthday party to go to for one of the people in the center and the recreation therapist was going to bring her to the party. Dad and Anthony said they would go with her and mom seemed really happy about it, but by the time they came to get her for the party, Anthony and Dad had to leave because Anthony had to get ready for work and he said that mom’s whole demeanor changed. She appeared to be upset that they were leaving and not going to the party with her. It seems like the recreation therapist took her to the party without them.
Claudia and dad saw mom after dinner. They went out for John's birthday today. They said that mom was asleep so they did her physical therapy. Claudia said mom awoke a few times in the 2 hours they were there and appeared to be in a dreamlike state...each time she awoke she appeared to be searching for dad and reaching out for him to hold her hand. He would tell her, "I'm here hon" and then take her hand and then mom would go back to sleep.
I arrived there late tonight to tuck her in and turn off the lights, set the timer on the TV and pray. Mom was sound asleep with her mouth open. I think I forgot to mention yesterday that I bought mom a Nerf gun just for kicks and cause and effect!! We played with it yesterday afternoon. She did shot the nerf darts all over the room over and over again but seemed very serious about it rather than playful.
Mom was awake for 3 days in a row!!!!! A record breaker!!!
"Gladness and joy will overtake them, and sorrow and sighing will flee away." Isaiah 35:10
Anthony went with dad to see mom late this morning and she was awake and fine. They did her physical therapy. They gave her the LTD catalog and a piece of paper and a pen and she went through the catalog and wrote on the paper as if ordering stuff but what she wrote was not legible. They watched TV and talked. Then they had a birthday party to go to for one of the people in the center and the recreation therapist was going to bring her to the party. Dad and Anthony said they would go with her and mom seemed really happy about it, but by the time they came to get her for the party, Anthony and Dad had to leave because Anthony had to get ready for work and he said that mom’s whole demeanor changed. She appeared to be upset that they were leaving and not going to the party with her. It seems like the recreation therapist took her to the party without them.
Claudia and dad saw mom after dinner. They went out for John's birthday today. They said that mom was asleep so they did her physical therapy. Claudia said mom awoke a few times in the 2 hours they were there and appeared to be in a dreamlike state...each time she awoke she appeared to be searching for dad and reaching out for him to hold her hand. He would tell her, "I'm here hon" and then take her hand and then mom would go back to sleep.
I arrived there late tonight to tuck her in and turn off the lights, set the timer on the TV and pray. Mom was sound asleep with her mouth open. I think I forgot to mention yesterday that I bought mom a Nerf gun just for kicks and cause and effect!! We played with it yesterday afternoon. She did shot the nerf darts all over the room over and over again but seemed very serious about it rather than playful.
Mom was awake for 3 days in a row!!!!! A record breaker!!!
"Gladness and joy will overtake them, and sorrow and sighing will flee away." Isaiah 35:10
Monday, October 18, 2010
Mom Update, October 18, 2010, Monday
Claudia began the day with mom and said that she did her physical therapy and washed her up, turned on the lights, opened the blinds...she said that mom was wide awake. When she left mom, she left her with the small bedsized computer table over her lap and a new puzzle and a few nuts and bolts to play with.
I arrived at mom's at 1:15ish. She was in her chair with her eyes closed tightly!!! Squinting. I said hello and she squinted them tighter!! She didn't want to see me today. We read a story I bought for her about a dashchund who adopts a piglet --- mom loves pigs! She looked at the pictures and the sentences but wouldn't read any of it aloud or mouth any of the words. I tried coloring in some coloring books with thick crayons but she wasn't interested. Alternately, she would close her eyes or look away from me or even fold her hands with her fingers laced together over her chest! I bought her a wooden barbecue set that looks like a grill, charcoal, tongs, skewers and wooden pieces of tomato, peppers, onions, shrimp, and beef. She liked playing with that (though she didn't show it on her face)...she spent a long time putting the skewer into the holes in the food and placing pieces of food on the skewers. She put 4-5 pieces of food on the skewers independently. We used the wooden farm animal puzzle next...hand over hand for some of the pieces. She wasn't able to match any pieces independently but she was able to place some pieces into their spots independently once I showed her where they went. One of her nurses said that she played it with mom too earlier and that mom matched the cow in its spot and placed it there. Next, we played with another wooden fish puzzle that had a fishing pole (magnetic). She put 5 of the 10 pieces into the puzzle alone. I began to coax her by calling her the "puzzle master" and she smiled and laughed a bit. (She needed MUCH coaxing and pep talks and reality talks about listening and participating for her own good). I asked her if she remembered what Anthony said about having a few more to do and showing her the pillow case and she laughed so hard!!!! She shook!!! We looked at a Toy Story book next and she was really interested at first and read the title "The Great Toy Escape" but then it was as though she caught herself and became silent for the remainder of the story...but she turned the pages one at a time with no problem and obviously silently read the words. (Anthony said that last week she licked her finger each time she turned the pages of a magazine they were reading!!). We did the pom poms in the container game that Claudia made for her---she did some with the tweezers (about 6) and others with her fingers (about 3). She tried the new shape sorter box I bought her --- finally after closing her eyes at the sight of it the first 3 times!!!. She couldn't match any of the shapes independently but could place them into the holes (some with minimal assistance). She put 3 shapes into the holes all on her own---star, oval, square. At one point, mom hit me with her elbow accidentally and she said, "Oooooo sorry!!!"
Con, dad, Anthony Michael and Sammy came to visit tonight. Dad had some more pre-op testing before his cataract surgery in November so he couldn't drive today...Anthony brought him to the appointment. Con said that while they visited mom tonight the facility doctor came in to see her and he asked her to raise her right arm, then left, then right leg, then left then wiggle her toes---mom did all in an instant as told except for her left leg!!!! Then Con asked her to clap hands for the doctor and mom did it with only a verbal cue!!! No modeling!!
We sort of received some results from the neurologist last week but not really... The doctor called dad to say that he received the CAT Scan results and that it all looked great. He said that the site where the aneurysm was looks good, no problems there. But, I asked dad if he asked the doctor about structural damage and he said no he didn't ask. So I don't know what all this means exactly. Mom goes for the EEG on Thursday in the morning. I have to work so I can't go. We get all the feedback from all the tests and records from the facility and the hospital on November 19, that's the follow-up visit date.
Claudia made a book for mom. I am attaching it! Feel free to send mom e-mails and I will copy them and bring them to her...or you could make her a book too!!!
"We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ." 1 Thessalonians 1:3
I arrived at mom's at 1:15ish. She was in her chair with her eyes closed tightly!!! Squinting. I said hello and she squinted them tighter!! She didn't want to see me today. We read a story I bought for her about a dashchund who adopts a piglet --- mom loves pigs! She looked at the pictures and the sentences but wouldn't read any of it aloud or mouth any of the words. I tried coloring in some coloring books with thick crayons but she wasn't interested. Alternately, she would close her eyes or look away from me or even fold her hands with her fingers laced together over her chest! I bought her a wooden barbecue set that looks like a grill, charcoal, tongs, skewers and wooden pieces of tomato, peppers, onions, shrimp, and beef. She liked playing with that (though she didn't show it on her face)...she spent a long time putting the skewer into the holes in the food and placing pieces of food on the skewers. She put 4-5 pieces of food on the skewers independently. We used the wooden farm animal puzzle next...hand over hand for some of the pieces. She wasn't able to match any pieces independently but she was able to place some pieces into their spots independently once I showed her where they went. One of her nurses said that she played it with mom too earlier and that mom matched the cow in its spot and placed it there. Next, we played with another wooden fish puzzle that had a fishing pole (magnetic). She put 5 of the 10 pieces into the puzzle alone. I began to coax her by calling her the "puzzle master" and she smiled and laughed a bit. (She needed MUCH coaxing and pep talks and reality talks about listening and participating for her own good). I asked her if she remembered what Anthony said about having a few more to do and showing her the pillow case and she laughed so hard!!!! She shook!!! We looked at a Toy Story book next and she was really interested at first and read the title "The Great Toy Escape" but then it was as though she caught herself and became silent for the remainder of the story...but she turned the pages one at a time with no problem and obviously silently read the words. (Anthony said that last week she licked her finger each time she turned the pages of a magazine they were reading!!). We did the pom poms in the container game that Claudia made for her---she did some with the tweezers (about 6) and others with her fingers (about 3). She tried the new shape sorter box I bought her --- finally after closing her eyes at the sight of it the first 3 times!!!. She couldn't match any of the shapes independently but could place them into the holes (some with minimal assistance). She put 3 shapes into the holes all on her own---star, oval, square. At one point, mom hit me with her elbow accidentally and she said, "Oooooo sorry!!!"
Con, dad, Anthony Michael and Sammy came to visit tonight. Dad had some more pre-op testing before his cataract surgery in November so he couldn't drive today...Anthony brought him to the appointment. Con said that while they visited mom tonight the facility doctor came in to see her and he asked her to raise her right arm, then left, then right leg, then left then wiggle her toes---mom did all in an instant as told except for her left leg!!!! Then Con asked her to clap hands for the doctor and mom did it with only a verbal cue!!! No modeling!!
We sort of received some results from the neurologist last week but not really... The doctor called dad to say that he received the CAT Scan results and that it all looked great. He said that the site where the aneurysm was looks good, no problems there. But, I asked dad if he asked the doctor about structural damage and he said no he didn't ask. So I don't know what all this means exactly. Mom goes for the EEG on Thursday in the morning. I have to work so I can't go. We get all the feedback from all the tests and records from the facility and the hospital on November 19, that's the follow-up visit date.
Claudia made a book for mom. I am attaching it! Feel free to send mom e-mails and I will copy them and bring them to her...or you could make her a book too!!!
"We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ." 1 Thessalonians 1:3
Mom Update, October 17, 2010, Sunday
Lenny went to see mom early this morning and began her day with her. He readied her for the day and did her physical therapy. Claudia and John and Anthony came to see mom shortly thereafter. Claudia bought many new items for mom to engage in as we continue her activities. I bought some things today too. We are now doing large, oversized pegs and pegboard, nuts and bolts, wooden puzzles that also require matching a picture, oversized tweezers and pom poms to place in a container with holes on top, picture cards, command book, smells, sounds, the IPAD, writing on the dry erase board with markers, mega blocks like large oversized legos, wooden beads to string, large oversized plastic buttons to string, and even a Nerf gun just for cause and effect fun!!! I also brought some books---picture books for her to look at or read. I can't remember all the other items right now. Anyone who goes to visit mom can engage her in any of these activities. We have a bed table in the closet to use when mom is in bed.
During one of her therapies, Claudia held mom's right arm and Anthony prompted her to use her left hand/arm by giving a verbal direction to put pom poms in cup and she did it!! It took her about 30 minutes to place 5 pom poms in the cup with her left hand, but she did it!! Claudia showed Anthony and John all the activities. Mom had a great sense of humor today, the boys had her laughing. John and Anthony were drawing on the dry erase board...they drew a face—but left out mouth and then nose and mom finished the drawing by drawing a mouth then a nose. She made the nose really big and they said it looked like Poppy's nsoe and she laughed. They drew silly pictures and she laughed really hard!!! The boys said they were going to go from room to room drawing and she laughed so hard she cried. They made an adaptive stylus for the IPAD but it doesn’t work—they did the vegetables on the IPAD — the word Jicima came up and John and Anth made jokes about the word and she laughed. They gave mom buttons to string but they have 4 holes and she sewed the buttons rather than string them!! Then she put the buttons through a slot in a container. She tried to stop working after putting a few buttons in the hole instead of continuing...we make her continue.Then Anthony grabbed a pillow case and said, "We have only a few more for you to do “ and mom laughed so hard she cried again!! She still has trouble making choices. Claudia made a choice board of pictures for mom to use. She tends to pick whatever is on the right side. Next, mom put 2 nuts and bolts together. She did all of the clothespin activity where she squeezes and places them on the rim of a Chinese food soup container. She talked a lot but sooooo low, no one understood her. They tried the IPAD in order to do some receptive language but she hits only what’s on the right.
After Lenny and Claudia and John left, Anthony and mom chilled and talked and watched TV. She became quieter. Con and Terry and Anthony Michael and Samantha came next. They all did more of her physical therapy and talked to her and watched "Brooklyn Bridge." At one point, Samantha put her head on mom's shoulder and mom reached over with her hand from the other side and hugged Sammy.
By the time I came to see her later in the afternoon, Con and Anthony and Terry and the kids were leaving. Mom fell asleep around 5:00 p.m. SHE STAYED AWAKE ALL DAY TODAY!!!!! This is the first time she's done that in 4 months.
Poor Claudia did the favor of going to help dad with paperwork gathering for MEDICAID. They spent hours, all afternoon, gathering paperwork. Dad and Mom's house is covered in piles of papers!!! We have almost all of it now. WORD TO THE WISE: Keep ALL your receipts for 5 years back from this point on!!! That's what you need for MEDICAID...proof of where you spent your money, how you spent your money...I came by later on and helped a bit too. Though I was only there an hour or two, I left with a knot in my stomach. It's grueling.
Lenny went to tuck mom in tonight and say prayers with her. He found her with one foot and leg off the bed!!! When he fixed her leg and foot and went back to her other side, she moved it off the bed again!! She is moving quite a bit now. She woke up temporarily and Lenny talked with her and then said good night and that he loved her. She kissed him and said, "I love you too"
"There is surely a hope for you, and your hope will not be cut off." Proverbs 23:18
During one of her therapies, Claudia held mom's right arm and Anthony prompted her to use her left hand/arm by giving a verbal direction to put pom poms in cup and she did it!! It took her about 30 minutes to place 5 pom poms in the cup with her left hand, but she did it!! Claudia showed Anthony and John all the activities. Mom had a great sense of humor today, the boys had her laughing. John and Anthony were drawing on the dry erase board...they drew a face—but left out mouth and then nose and mom finished the drawing by drawing a mouth then a nose. She made the nose really big and they said it looked like Poppy's nsoe and she laughed. They drew silly pictures and she laughed really hard!!! The boys said they were going to go from room to room drawing and she laughed so hard she cried. They made an adaptive stylus for the IPAD but it doesn’t work—they did the vegetables on the IPAD — the word Jicima came up and John and Anth made jokes about the word and she laughed. They gave mom buttons to string but they have 4 holes and she sewed the buttons rather than string them!! Then she put the buttons through a slot in a container. She tried to stop working after putting a few buttons in the hole instead of continuing...we make her continue.Then Anthony grabbed a pillow case and said, "We have only a few more for you to do “ and mom laughed so hard she cried again!! She still has trouble making choices. Claudia made a choice board of pictures for mom to use. She tends to pick whatever is on the right side. Next, mom put 2 nuts and bolts together. She did all of the clothespin activity where she squeezes and places them on the rim of a Chinese food soup container. She talked a lot but sooooo low, no one understood her. They tried the IPAD in order to do some receptive language but she hits only what’s on the right.
After Lenny and Claudia and John left, Anthony and mom chilled and talked and watched TV. She became quieter. Con and Terry and Anthony Michael and Samantha came next. They all did more of her physical therapy and talked to her and watched "Brooklyn Bridge." At one point, Samantha put her head on mom's shoulder and mom reached over with her hand from the other side and hugged Sammy.
By the time I came to see her later in the afternoon, Con and Anthony and Terry and the kids were leaving. Mom fell asleep around 5:00 p.m. SHE STAYED AWAKE ALL DAY TODAY!!!!! This is the first time she's done that in 4 months.
Poor Claudia did the favor of going to help dad with paperwork gathering for MEDICAID. They spent hours, all afternoon, gathering paperwork. Dad and Mom's house is covered in piles of papers!!! We have almost all of it now. WORD TO THE WISE: Keep ALL your receipts for 5 years back from this point on!!! That's what you need for MEDICAID...proof of where you spent your money, how you spent your money...I came by later on and helped a bit too. Though I was only there an hour or two, I left with a knot in my stomach. It's grueling.
Lenny went to tuck mom in tonight and say prayers with her. He found her with one foot and leg off the bed!!! When he fixed her leg and foot and went back to her other side, she moved it off the bed again!! She is moving quite a bit now. She woke up temporarily and Lenny talked with her and then said good night and that he loved her. She kissed him and said, "I love you too"
"There is surely a hope for you, and your hope will not be cut off." Proverbs 23:18
Sunday, October 17, 2010
Mom Update, October 15, 2010, Friday
Hi Everyone,
Dad, Kath and Lenny went upstate until tomorrow and so I am writing the update tonight. Kathy started the morning with mom. She was awake when she arrived. Kathy was happy and smiling a lot. She tried to work on the ipad but mom didn't seem into it although she did do catagories and vegetable programs. Mom loves to look at the vegetables. She brought some simple books with clear pictures on each page. Some books had animal pictures. Mom seems to like to look through books and magazines. Kathy told her to comb her hair and mom picked up the comb and combed her hair. Kathy even directed her where to comb and she followed the direction. Tara the nurse told Kathy that yesterday mom was pressing the call button attached to he bed. Flo, Maureen and Florence (mom's friends) came to visit. Flo was touching mom's feet and mom said, "Leave me alone." She was happy to hear mom say anything. Ava was also there and started to do PT with mmom and mom lifted her right arm and amacked Ava on the hand! Ava told her that she had to do PT and that she was going to be careful. By the time I arrived FLorence, FLo and MAureen were leaving and they shared their story. They said it still was a great visit with mom. Mom was tired and sleepy when I arrived to I took the opportunity to do PT. I sat with mom and watched the food channel. When the staff put her in the bed she woke up. I called her and she said, "What?" I asked her if she wanted to watch MASH and she said no. I placed the lap desk on her lap and placed the pom poms, tweezers and cup on the tray. She played around with the tweezers and then grabbed all the pom poms and placed them in the cup. I took out the wipe off board and she took it off the lap desk and put the desk in the down position to watch TV. I took everything away and we watched Paula Dean. She took the remote and lowered the volume. That is one of mom's favorite cooking shows. When I left I left some of her soft piggies and the remote on the bed in her reach.
I hope whe is awake tomorrow morning!
Peace! Where there is life, there is hope!
~Claud
Dad, Kath and Lenny went upstate until tomorrow and so I am writing the update tonight. Kathy started the morning with mom. She was awake when she arrived. Kathy was happy and smiling a lot. She tried to work on the ipad but mom didn't seem into it although she did do catagories and vegetable programs. Mom loves to look at the vegetables. She brought some simple books with clear pictures on each page. Some books had animal pictures. Mom seems to like to look through books and magazines. Kathy told her to comb her hair and mom picked up the comb and combed her hair. Kathy even directed her where to comb and she followed the direction. Tara the nurse told Kathy that yesterday mom was pressing the call button attached to he bed. Flo, Maureen and Florence (mom's friends) came to visit. Flo was touching mom's feet and mom said, "Leave me alone." She was happy to hear mom say anything. Ava was also there and started to do PT with mmom and mom lifted her right arm and amacked Ava on the hand! Ava told her that she had to do PT and that she was going to be careful. By the time I arrived FLorence, FLo and MAureen were leaving and they shared their story. They said it still was a great visit with mom. Mom was tired and sleepy when I arrived to I took the opportunity to do PT. I sat with mom and watched the food channel. When the staff put her in the bed she woke up. I called her and she said, "What?" I asked her if she wanted to watch MASH and she said no. I placed the lap desk on her lap and placed the pom poms, tweezers and cup on the tray. She played around with the tweezers and then grabbed all the pom poms and placed them in the cup. I took out the wipe off board and she took it off the lap desk and put the desk in the down position to watch TV. I took everything away and we watched Paula Dean. She took the remote and lowered the volume. That is one of mom's favorite cooking shows. When I left I left some of her soft piggies and the remote on the bed in her reach.
I hope whe is awake tomorrow morning!
Peace! Where there is life, there is hope!
~Claud
Mom Update, October 16, 2010, Saturday
Hi everyone,
Sorry this didn't go through yesterday, technical difficulties. Mom was sleepy at first yesterday but I woke her up after I did her PT. It has been easier to do her PT while she is sleeping because she fights us now when she is awake. I always tell her I need to do PT and e "Gently Persistent". Once she woke up Terry cam and she and I were able to have mom complete most of her fine motor tasks. Mom was able to do nuts and bolts, clothes pins on the rim of a plastic container and write a line "down". I created a photo based visual schedule for her to choose what tasks she wants to complete. She doesn't understand how to make a choice just yet but we will keep trying. I also made color cards for her. We are not sure if she is color blind right now since colors mean nothing to her. We have tried to have her match colors and she can't. I also had her cutting on a line and a nurse walked in and was in shock that she was able to do this independently! I also created a container with holes the size of the orange pom poms and she was able to place them in the holes. I want to mix things up so she won't get bored.
Overall, in the short time I was with her she was able to do a lot. It was also great to share that time with Terry and be ale to show her what mom can do.
Dad and Kath are back from upstate and Con and Anth and the family enjoyed a great day at the King Tut exhibit in NYC!
Thank you to all for the prayers and kind thoughts!
Where there is life, there is hope!
~Claud
Sorry this didn't go through yesterday, technical difficulties. Mom was sleepy at first yesterday but I woke her up after I did her PT. It has been easier to do her PT while she is sleeping because she fights us now when she is awake. I always tell her I need to do PT and e "Gently Persistent". Once she woke up Terry cam and she and I were able to have mom complete most of her fine motor tasks. Mom was able to do nuts and bolts, clothes pins on the rim of a plastic container and write a line "down". I created a photo based visual schedule for her to choose what tasks she wants to complete. She doesn't understand how to make a choice just yet but we will keep trying. I also made color cards for her. We are not sure if she is color blind right now since colors mean nothing to her. We have tried to have her match colors and she can't. I also had her cutting on a line and a nurse walked in and was in shock that she was able to do this independently! I also created a container with holes the size of the orange pom poms and she was able to place them in the holes. I want to mix things up so she won't get bored.
Overall, in the short time I was with her she was able to do a lot. It was also great to share that time with Terry and be ale to show her what mom can do.
Dad and Kath are back from upstate and Con and Anth and the family enjoyed a great day at the King Tut exhibit in NYC!
Thank you to all for the prayers and kind thoughts!
Where there is life, there is hope!
~Claud
Wednesday, October 13, 2010
Mom Update, October 13, 2010, Wednesday
Mom slept today....the pattern remains...awake and alert...followed by asleep and healing. Jean (Claudia's son) started mom's day with her. Dad and Anthony saw her for a few hours after dad's eye doctor appointment. Claudia saw her in the afternoon followed by Dad, Con, Anthony Michael and Samantha and Michael. Everyone delivered her physical therapy and tried their best to rouse her but to no avail. Con side that when she was doing mom's physical therapy with Anthony Michael, mom grimaced in pain and Con said, "Sorry mom...I don't mean to hurt you. I just need to exercise your hand so it gets better." Mom didn't like that answer so she pulled her right hand free from Anthony and used it to remove Con's hands from her left hand!!! This is such a good thing! On the down side, they raised her vent back up to a 12 from 8...I don't know why. The head respiratory therapist had just told Claudia that mom was doing great the other day... I have a big day at work tomorrow---presentations and speeches to deliver---say a prayer for me please, thanks.
"So do not throw away your confidence, it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what He has promised" Hebrews 10:35-36
"So do not throw away your confidence, it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what He has promised" Hebrews 10:35-36
Tuesday, October 12, 2010
Mom Update, October 12, 2010, Tuesday
Claudia started mom's day with her early this morning and found mom "bright eyed and bushy tailed!" True to form---sleep one day and awake the next. Claudia bought mom a preschooler's plastic, thick peg board with oversized pegs for mom to use in order to help strengthen her fine motor skills. Mom was able to put 5 pegs into the board independently using first her right and then her left hand!! She was also able to pull the pegs out as well. Claudia came up with the idea of a peg board because, on Sunday, mom was able to open the magic marker she was using by pulling off the cap and then putting the cap back on!! Receptively mom pulled out pegs according to color.... Put pegs in board using left hand---took 10 minutes.
I purchased some large oversized plastic preschooler's tweezers for mom to use for fine motor skills. Claudia came up with the idea to have mom pick up 1 inch round pom poms and place them in a cup. Mom was able to pick up 5 pom poms and place them into the cup!!! Mom took the tweezers and tweezed the cup and brought tweezers to left hand and with the tweezers put cup in left hand.... she did this in front of a nurse and then in front of 2 respiratory therapists... Then mom left the tweezers on table and put the pom poms in the tweezers then lifted the tweezers up with the 3 pom poms in it and placed all 3 in a cup!! She comes up with such creative ways to compensate for any of her losses!! She tried to screw the pegs into the board at one point too.(Claudia already went to the teaching supply store to buy mom a bucket of plastic screws and bolts!!). Mom also put the peg in her right hand and put it in the right side row of holes and then took her thumb and placed it on top of peg and put her other hand underneath the board and squeezed to push the peg in.
I came after Claudia, around mid-morning. Every time I tried to get mom to speak she resisted. I usually touch my lips and speak and then touch her lips and tell her to speak---this cue usually prompts her to speak (out loud or whispering or mouthing words). Today, every time I did this and touched her lips---she tried to either lick or bite my finger!! She also pushed my head away from her face while I was talking to her. When I asked her to "Look at me" she squinted her eyes shut tightly!! She read, "St. Joseph's" on my shirt. She read the word "Belmont" on the dry erase board but either said nothing or "I don't want to" to all other words I showed her. Though, when I showed her the name "DOROTHY" and asked her whose name it was, she did say, "My name." I put the IPOD music on for her and her roommate and left.
Respiratory therapist still is insisting that mom can't talk while on a trach. How sad!!! You would think that a person working in this capacity would know more about trachs!! Mom DOES INDEED speak out loud on the trach!! She doesn't like how she sounds though and this prohibits her from speaking more out loud.
She is supposed to have circulation stockings on her legs during the day...but this is not being done so we always need to remind the staff to do it. The occupational therapist used to work on mom's neck (it was tilting to the right side badly)...and when this was being done, mom's neck was straight again. Now, since they cut off all her therapies, mom's neck is tilting to the right side AGAIN. They weren't supposed to stop the neck therapy, but they did. When Claudia and I went to talk to the head of the Therapy Department, he told me that they won't do it, but they will find out if they can teach one of our family members to do it (either CLaudia or I). Dad was livid over this! And we are back to the diaper issue where they are giving her diapers that are the wrong size again...tooooo small!
Does anyone know of anyone who knows about respiratory therapy exercises??? Breathing exercises?? We need to work on getting mom off the vent. She is still on a 10 this week...but the machine indicates that she is breathing over the vent and on her own a little. PRAY THAT SHE BEGINS TO BREATH ON HER OWN AND GETS OFF THE VENT!!
This afternoon, late, Claudia and I returned to work with mom. Anthony and Dad visited her in the late morning and early afternoon and stayed until she fell asleep. Claudia did the "Sounds at Home" "Outdoor Sounds" and "Tuned into Learning" sound games with coinciding pictures, but mom wasn't that interested. When she heard the sound of the door closing, Claudia said, "THat's a door opening and closing" but mom said in an annoyed voice, "Closing" as if to say, "It isn't opening!!" hahaha!
She stacked the pegs on the peg board one on top of the other...connecting each one 2-3 at a time. I tried to write with her and made a circle and then she made a circle. We made a vertical line and then she made one. We made a horizontal line and then she made that too! She even tried to make a D !!!! She did all of this in front of the CNA. She even said his name---or mouthed it.
Claudia left as Dad arrived and we spent time with mom but she began to fall asleep. At one point, mom pulled on her trach and I said, "Stop" and tried to remove her hand...and she said out loud in response, "OK OK OK!!!"
Tomorrow, dad has an eye doctor's appointment and may not be able to drive out to see mom during the day because of the drops they will put in his eyes. We are all working during the day as well. So anyone who can visit mom tomorrow during the day or morning would be greatly appreciated.
A funny thing happened on Sunday, Dad and I were talking about how great mom's progress is and he said, "Yeah, she's doing sooo great. It's really amazing!!! Hey, hon, how are you going to get her to walk? What's your plan for that?" God Himself only knows that answer!!!
"Remain in me, and I will remain in you. No branch can bear fruit by itself; it must
remain in the vine."
John 15:4
I purchased some large oversized plastic preschooler's tweezers for mom to use for fine motor skills. Claudia came up with the idea to have mom pick up 1 inch round pom poms and place them in a cup. Mom was able to pick up 5 pom poms and place them into the cup!!! Mom took the tweezers and tweezed the cup and brought tweezers to left hand and with the tweezers put cup in left hand.... she did this in front of a nurse and then in front of 2 respiratory therapists... Then mom left the tweezers on table and put the pom poms in the tweezers then lifted the tweezers up with the 3 pom poms in it and placed all 3 in a cup!! She comes up with such creative ways to compensate for any of her losses!! She tried to screw the pegs into the board at one point too.(Claudia already went to the teaching supply store to buy mom a bucket of plastic screws and bolts!!). Mom also put the peg in her right hand and put it in the right side row of holes and then took her thumb and placed it on top of peg and put her other hand underneath the board and squeezed to push the peg in.
I came after Claudia, around mid-morning. Every time I tried to get mom to speak she resisted. I usually touch my lips and speak and then touch her lips and tell her to speak---this cue usually prompts her to speak (out loud or whispering or mouthing words). Today, every time I did this and touched her lips---she tried to either lick or bite my finger!! She also pushed my head away from her face while I was talking to her. When I asked her to "Look at me" she squinted her eyes shut tightly!! She read, "St. Joseph's" on my shirt. She read the word "Belmont" on the dry erase board but either said nothing or "I don't want to" to all other words I showed her. Though, when I showed her the name "DOROTHY" and asked her whose name it was, she did say, "My name." I put the IPOD music on for her and her roommate and left.
Respiratory therapist still is insisting that mom can't talk while on a trach. How sad!!! You would think that a person working in this capacity would know more about trachs!! Mom DOES INDEED speak out loud on the trach!! She doesn't like how she sounds though and this prohibits her from speaking more out loud.
She is supposed to have circulation stockings on her legs during the day...but this is not being done so we always need to remind the staff to do it. The occupational therapist used to work on mom's neck (it was tilting to the right side badly)...and when this was being done, mom's neck was straight again. Now, since they cut off all her therapies, mom's neck is tilting to the right side AGAIN. They weren't supposed to stop the neck therapy, but they did. When Claudia and I went to talk to the head of the Therapy Department, he told me that they won't do it, but they will find out if they can teach one of our family members to do it (either CLaudia or I). Dad was livid over this! And we are back to the diaper issue where they are giving her diapers that are the wrong size again...tooooo small!
Does anyone know of anyone who knows about respiratory therapy exercises??? Breathing exercises?? We need to work on getting mom off the vent. She is still on a 10 this week...but the machine indicates that she is breathing over the vent and on her own a little. PRAY THAT SHE BEGINS TO BREATH ON HER OWN AND GETS OFF THE VENT!!
This afternoon, late, Claudia and I returned to work with mom. Anthony and Dad visited her in the late morning and early afternoon and stayed until she fell asleep. Claudia did the "Sounds at Home" "Outdoor Sounds" and "Tuned into Learning" sound games with coinciding pictures, but mom wasn't that interested. When she heard the sound of the door closing, Claudia said, "THat's a door opening and closing" but mom said in an annoyed voice, "Closing" as if to say, "It isn't opening!!" hahaha!
She stacked the pegs on the peg board one on top of the other...connecting each one 2-3 at a time. I tried to write with her and made a circle and then she made a circle. We made a vertical line and then she made one. We made a horizontal line and then she made that too! She even tried to make a D !!!! She did all of this in front of the CNA. She even said his name---or mouthed it.
Claudia left as Dad arrived and we spent time with mom but she began to fall asleep. At one point, mom pulled on her trach and I said, "Stop" and tried to remove her hand...and she said out loud in response, "OK OK OK!!!"
Tomorrow, dad has an eye doctor's appointment and may not be able to drive out to see mom during the day because of the drops they will put in his eyes. We are all working during the day as well. So anyone who can visit mom tomorrow during the day or morning would be greatly appreciated.
A funny thing happened on Sunday, Dad and I were talking about how great mom's progress is and he said, "Yeah, she's doing sooo great. It's really amazing!!! Hey, hon, how are you going to get her to walk? What's your plan for that?" God Himself only knows that answer!!!
"Remain in me, and I will remain in you. No branch can bear fruit by itself; it must
remain in the vine."
John 15:4
Monday, October 11, 2010
Mom Update, October 11, 2010, Monday
Typically, our whole family would be upstate this weekend shopping, eating, laughing...but we are thankful that, although we weren't upstate, we were all together this Columbus Day weekend.
Mom had a sleepy day today. Anthony, Con, Anthony Michael and Samantha visited her all morning into the early afternoon when Dad and Terry came. Mom predominantly slept and, when she was awake, she just stared a bit before falling asleep again. Claudia came this evening and Lenny and I met her there. Mom slept some more. This seems to be the pattern. It is definitely one that we read about in the book, "My Stroke of Insight" written by a brain scientist who suffered a stroke. We don't realize, and take for granted, how much energy we use to do even the simplest of things in life. Mom is getting better though. Thanks to all the prayers and the work of the Lord.
""This is the resting place, let the weary rest"; Isaiah 28:12
Mom had a sleepy day today. Anthony, Con, Anthony Michael and Samantha visited her all morning into the early afternoon when Dad and Terry came. Mom predominantly slept and, when she was awake, she just stared a bit before falling asleep again. Claudia came this evening and Lenny and I met her there. Mom slept some more. This seems to be the pattern. It is definitely one that we read about in the book, "My Stroke of Insight" written by a brain scientist who suffered a stroke. We don't realize, and take for granted, how much energy we use to do even the simplest of things in life. Mom is getting better though. Thanks to all the prayers and the work of the Lord.
""This is the resting place, let the weary rest"; Isaiah 28:12
Sunday, October 10, 2010
Mom update, October 10, 2010, Sunday
Mom had an amazing day!! From 10:00 a.m. through 3:30 p.m., mom was alert and interactive! Claudia and Ava arrived first. Ava was in the middle of telling mom a story about George Washington from her Art History class at college and Claudia laughed at part of the story (like laughing at what Ava said) and mom gave Claudia the angriest look!!! As if to say, "Don't you laugh at Ava!!" Mom also mouthed some of the words to "Somewhere Over the Rainbow" as Ava sang the song to her.
Anthony, my brother, continues to make mom laugh uncontrollably!!! She just looks at him and laughs!! He and Anthony Michael were dancing and she became hysterical!! Ava played the guitar and we all sang "What a Wonderful World" and mom mouthed some of the words. She clapped her hands several times independently. She smiled really big smiles!
The most amazing thing Mom did today was READ!!!!! We began by writing our names on the dry erase board, then showing mom and asking, "What does this say?" and she read everything we showed her!!! She either whispered or mouthed the words!!! Here's some of what she read:
-All our names (Kathy, Claudia, Anthony, Anthony Michael, Con, Jean, Ava, John, Terry, Lenny...)
'Gilman'
"Dorothy"
"The Gilman Family"
"I am Dorothy"
"I have 4 children"
"Belmont Avenue"
"West Babylon"
"Yankees Win"
"Mets Losers"
"Carol"
"Flo" (sounded out the F sound first)
"Maureen" (sounded out the first syllable over and over first)
"Dotty and Jean"
"Anthony has a big head"
"I love you"
"I like music"
"Anthony is my-my-my-...." (we read 'sweetheart')
"Laugh at Anthony"
"I am happy"
"I was born in Brooklyn"
"I love Samantha and Anthony"
She combed her own hair...and Anthony and Dad's too.
Anthony told her that he would bring her organ to the center and play it while Con sings and mom laughed sooooo hard!!!! We just laughed with her all morning...it was a fun day. She slept from 3:30 on until I left at 8:30 p.m.
"But thanks be to God, who always leads us in triumphal procession in Christ and through us spreads everywhere the fragrance of the knowledge of him" 2 Corinthians 2:14
Anthony, my brother, continues to make mom laugh uncontrollably!!! She just looks at him and laughs!! He and Anthony Michael were dancing and she became hysterical!! Ava played the guitar and we all sang "What a Wonderful World" and mom mouthed some of the words. She clapped her hands several times independently. She smiled really big smiles!
The most amazing thing Mom did today was READ!!!!! We began by writing our names on the dry erase board, then showing mom and asking, "What does this say?" and she read everything we showed her!!! She either whispered or mouthed the words!!! Here's some of what she read:
-All our names (Kathy, Claudia, Anthony, Anthony Michael, Con, Jean, Ava, John, Terry, Lenny...)
'Gilman'
"Dorothy"
"The Gilman Family"
"I am Dorothy"
"I have 4 children"
"Belmont Avenue"
"West Babylon"
"Yankees Win"
"Mets Losers"
"Carol"
"Flo" (sounded out the F sound first)
"Maureen" (sounded out the first syllable over and over first)
"Dotty and Jean"
"Anthony has a big head"
"I love you"
"I like music"
"Anthony is my-my-my-...." (we read 'sweetheart')
"Laugh at Anthony"
"I am happy"
"I was born in Brooklyn"
"I love Samantha and Anthony"
She combed her own hair...and Anthony and Dad's too.
Anthony told her that he would bring her organ to the center and play it while Con sings and mom laughed sooooo hard!!!! We just laughed with her all morning...it was a fun day. She slept from 3:30 on until I left at 8:30 p.m.
"But thanks be to God, who always leads us in triumphal procession in Christ and through us spreads everywhere the fragrance of the knowledge of him" 2 Corinthians 2:14
Saturday, October 9, 2010
Mom Update, October 9, 2010, Saturday
From yesterday...Dad reported that mom was tired the remainder of yesterday. I also forgot to mention yesterday that mom was tapping her fingers and/or feet to the music!! And keeping time!! Lenny asked mom to read his shirt too --- it said "New York Jets 1960" and mom read, "1960." Lenny also showed mom the clock in her room and asked her what time it was because he and I were talking about the time of day and mom said it was 1:00 (it was actually 2:00). When Lenny showed her the clock, it was 2:05 (analog) and mom read "1:05" which makes sense visually...big hand on the 1 to indicate 5 minutes past the hour.
Today, Dad and John said that mom slept all day long. Tonight, when Dad returned, mom woke up and talked a lot to him saying, "I love you" and also "That's good" in response to dad telling her that all of us "kids" would be visiting her tomorrow. She also told the nurse she was "Fine" as well. Dad said he couldn't remember what else she said or did today. Anthony, Con, the kids, Claudia, Terry and I went to visit our cousin, Laura, today. We went to Sugar Loaf (a quaint village upstate near where Laura lives) for a Fall Festival and Craft Fair. We all had a wonderful day with Laura, Barry, their kids (Mikayla, Kevin and Joshua) and Uncle Ray, Aunt Irene, Billy, Karen and their kiddies.
"This is the resting place, let the weary rest" Isaiah 28:12
Today, Dad and John said that mom slept all day long. Tonight, when Dad returned, mom woke up and talked a lot to him saying, "I love you" and also "That's good" in response to dad telling her that all of us "kids" would be visiting her tomorrow. She also told the nurse she was "Fine" as well. Dad said he couldn't remember what else she said or did today. Anthony, Con, the kids, Claudia, Terry and I went to visit our cousin, Laura, today. We went to Sugar Loaf (a quaint village upstate near where Laura lives) for a Fall Festival and Craft Fair. We all had a wonderful day with Laura, Barry, their kids (Mikayla, Kevin and Joshua) and Uncle Ray, Aunt Irene, Billy, Karen and their kiddies.
"This is the resting place, let the weary rest" Isaiah 28:12
Mom Update, October 8, 2010, Friday
Mom was sleepy with Claudia this morning. But when Lenny and I arrived there at 11 a.m., she was in her chair and wide awake. She smiled at me when I greeted her and then mouthed, "Hi sweetheart" to Lenny. She touched my mouth as I began to talk to her face to face, and then I said, "Yes, that's my mouth, touch your mouth" and she did!! She then proceeded to touch her mouth, head, nose, ear, eye...with no modeling--just a verbal prompt to do so!! We played some IPAD games with her next---Lenny plays a game where she needs to find the correct phonetic sound to match a letter---she does pretty well with this. She seems to know when she is looking for a vowel vs. a consonant. She also likes to play a game on the IPAD with Lenny that involves finding a missing word from a sentence. I asked her if she wanted to listen to music and she said yes...so we listened to SImon and Garfunkel, Three Dog Night, Stevie Wonder...then I asked if she wanted to hear Moon River...but I told her, if I played it, she had to sing with me. Before this song, I had been singing all the songs to her as she listened. Now, I was asking her to sing with me. I began to sing Moon River and as I was looking at her face to face, she began to mouth EVERY word in the song!!! The whole thing!!! We sang MORE next, then some Glenn Campbell songs...she mouthed the words to every single song!!!!!! At one point, she was trying to talk to us..or we were trying to listen to what she was saying, and she told me, "I need to go to the bathroom"---amazing!! She also asked where the speech therapist was and told Lenny that she didn't want to eat. She said many of her typical single words like 'what' 'yes' 'no'.... I sang songs and she mouthed the words for 1 hour and 35 minutes!!! She was soooo focused today. So on target. She was like a sponge, absorbing all the information around her. I love days like these. Dad came in the afternoon and Lenny and I left. I don't know how she did this afternoon or evening yet because Claudia and I went to the 50th Wedding Anniversary of a dear friend of mine from Hofstra. The party was hosted at her brother's house. We are staying at a local Comfort Inn for the night and returning home tomorrow. I will give you the rest of today's update tomorrow on Saturday.
"She is a tree of life to those who embrace her..." Proverbs 3:18
"She is a tree of life to those who embrace her..." Proverbs 3:18
Thursday, October 7, 2010
Mom Update, October 7, 2010, Thursday, Addendum
Please lift dad up in prayer tonight...he was feeling down this evening. He comes to see mom each day with a smile, a kiss, and even flowers still...their love is so special to be part of.
Mom Update, October 7, 2010, Thursday
I arrived at mom's room at 5:45 a.m. so that I could accompany her to the hospital for the CAT Scan that the neurologist ordered last week. The ambulance was to arrive and leave by 6:30 a.m. Need I say that things didn't go without a hitch?? hahahah!! The ambulance arrived at 8:00 a.m. and left by 8:25 a.m. As Rosanne Rosanna Danna used to say on Saturday Night Live-- "It's always something!!" Mom made it there safely and Anthony met me at mom's room at 7:15 and went to the hospital with her and then back to her room for a while as I left and went to work. We should have results tomorrow.
Mom slept all day and evening. Anthony left when dad came this afternoon. John sat with mom next and said she was out like a light. Lenny went to tuck mom in tonight and said she opened her eyes and looked at him and smiled and then, after prodding, said, "HI" out loud to him before going back to sleep.
Mom continues to heal, and for this, we are thankful.
"I will give you back your health and heal your wounds," says the LORD" Jeremiah 30:17
Mom slept all day and evening. Anthony left when dad came this afternoon. John sat with mom next and said she was out like a light. Lenny went to tuck mom in tonight and said she opened her eyes and looked at him and smiled and then, after prodding, said, "HI" out loud to him before going back to sleep.
Mom continues to heal, and for this, we are thankful.
"I will give you back your health and heal your wounds," says the LORD" Jeremiah 30:17
Wednesday, October 6, 2010
Mom Update, October 6, 2010, Wednesday
Claudia saw mom this morning and she was sleepy.
Mom was sleeping when Dad and Anthony visited this afternoon and when she woke up, the recreation therapist asked her if she wanted to go listen to the concert on an organ. Mom said, "Yes" and they brought her there. Mom was very happy and smiley and Anthony had her laughing. Mom was laughing hysterically at Anthony and his jokes. The therapist asked her if she enjoyed it, and mom said, "Yes." Dad said that mom was talking a lot but low talking so it wasn't always easy to understand what she was saying.
Con and the kids went to see her with Dad tonight. Con was singing for her and mom smirked at her. Con started clapping at something later on, and then mom put her hands together and started clapping too!!!!! She hasn't clapped in 4 months!!!! Then later, as Con was singing again to mom, Anthony Michael was doing the crazy sign and mom copied him!!! Con asked mom if she was her favorite daughter-in-law and mom said, "Yes." Samantha recorded everything mom said while they visited. She said, "Samantha" 1x, "Anthony Michael" 1x, "No" 4xs, "What" "It's OK" "OK" and "Sam Study" 1x each and Nothing" and "Yes" 2xs.
Everyone did her physical therapy and cognitive therapy. Even though the speech therapist canceled speech therapy on Monday, she was there working with mom today and reported that mom was repeating words for her.
On a bit of a down side, mom's vent was put back from 8 to 10 again...she is still in the middle range/level though, so that's good. Pray she begins to breathe on her own. Sometimes I wonder how that can happen at all when I see how badly she is positioned in the bed...no one could breathe at the angles they leave her.
When I came to see mom late tonight, she was all cockeyed in the bed!! Her head was down low and off to the left side rail, her legs were moved around and spread out, her body was diagonal in the bed too and her food line was disconnected from her G-Tube---at first, I brought the head night nurse in to see her like this and he gathered all the CNAs to show them and tell them to fix her. Dad and Con and the kids had just left mom 2 hours earlier. Claudia and I are wondering if mom is beginning to move around more??!!!!! The CNAs claim that she is moving and that they originally had her set up correctly in the bed. I hope she is moving more!!!
"Let everything that has breath praise the LORD. Praise the LORD." Psalm 150:6
Mom was sleeping when Dad and Anthony visited this afternoon and when she woke up, the recreation therapist asked her if she wanted to go listen to the concert on an organ. Mom said, "Yes" and they brought her there. Mom was very happy and smiley and Anthony had her laughing. Mom was laughing hysterically at Anthony and his jokes. The therapist asked her if she enjoyed it, and mom said, "Yes." Dad said that mom was talking a lot but low talking so it wasn't always easy to understand what she was saying.
Con and the kids went to see her with Dad tonight. Con was singing for her and mom smirked at her. Con started clapping at something later on, and then mom put her hands together and started clapping too!!!!! She hasn't clapped in 4 months!!!! Then later, as Con was singing again to mom, Anthony Michael was doing the crazy sign and mom copied him!!! Con asked mom if she was her favorite daughter-in-law and mom said, "Yes." Samantha recorded everything mom said while they visited. She said, "Samantha" 1x, "Anthony Michael" 1x, "No" 4xs, "What" "It's OK" "OK" and "Sam Study" 1x each and Nothing" and "Yes" 2xs.
Everyone did her physical therapy and cognitive therapy. Even though the speech therapist canceled speech therapy on Monday, she was there working with mom today and reported that mom was repeating words for her.
On a bit of a down side, mom's vent was put back from 8 to 10 again...she is still in the middle range/level though, so that's good. Pray she begins to breathe on her own. Sometimes I wonder how that can happen at all when I see how badly she is positioned in the bed...no one could breathe at the angles they leave her.
When I came to see mom late tonight, she was all cockeyed in the bed!! Her head was down low and off to the left side rail, her legs were moved around and spread out, her body was diagonal in the bed too and her food line was disconnected from her G-Tube---at first, I brought the head night nurse in to see her like this and he gathered all the CNAs to show them and tell them to fix her. Dad and Con and the kids had just left mom 2 hours earlier. Claudia and I are wondering if mom is beginning to move around more??!!!!! The CNAs claim that she is moving and that they originally had her set up correctly in the bed. I hope she is moving more!!!
"Let everything that has breath praise the LORD. Praise the LORD." Psalm 150:6
Tuesday, October 5, 2010
Mom Update, October 5, 2010, Tuesday
Claudia and I saw mom early this morning before work. Claudia did her physical therapy and mom slept the whole time we were there.
Dad saw mom this afternoon and said that she did a lot of talking but mouthing words and sentences or low talking. He didn't remember all she said but said that once when he was smiling at her she said, "What are you laughing about?" She was very smiley with him today. She stayed awake for an hour of their visit and then fell asleep again.
Claudia has been going to the head of physical therapy as we were told to do to report on the pillow placement...it is NEVER done correctly from day 1 forward. Every time we arrive, we have to move the pillows around and put them the correct way so that mom doesn't get edema in her extremeties.
Claudia came to see mom in the late afternoon and mom was awake. They did pictures, the IPAD, physical therapy...very productive. Mom said, "Yes" and "I'm not" (in reference to pulling on her trach line)... She mouthed Claudia's name on command with a model prompt. I came to meet them late in the evening and mom was still awake. A funny thing with mom is that, she sometimes seems like she isn't paying attention, but as soon as I lower my voice and whisper...she is staring and glaring right at me!!!!! As if to say, "What is Kathy talking about???" Too funny!!!
Mom is now able to assist in her physical therapy on a regular basis. She doesn't have the independent range of motion that she does when we assist her, but she is able to follow the commands to exercise her right side!!!
Mainly, when mom is awake, she is quiet and still and either becomes preoccupied, sleepy, or will sometimes talk (randomly and sporadically) or track conversations with her eyes. Though she is pretty responsive to Anthony and Con on a regular basis. They are the social visitors and Claudia and I are the teachers!!! hahaha!!! No fun!!
The kindness of friends and family continues to astound us and touch our hearts deeply...when I arrived at work today, I found that a colleague of mine spent hours hand-making a book of index cards to use with mom to improve her speech and language skills...it made me cry when I saw it. The prayers and support from you all is priceless and so necessary in order to withstand this ordeal...you just know you what it means to us...we love you all.
"...[may] the autumn rains...clothe...[you] with blessings" Psalm 84:6
Dad saw mom this afternoon and said that she did a lot of talking but mouthing words and sentences or low talking. He didn't remember all she said but said that once when he was smiling at her she said, "What are you laughing about?" She was very smiley with him today. She stayed awake for an hour of their visit and then fell asleep again.
Claudia has been going to the head of physical therapy as we were told to do to report on the pillow placement...it is NEVER done correctly from day 1 forward. Every time we arrive, we have to move the pillows around and put them the correct way so that mom doesn't get edema in her extremeties.
Claudia came to see mom in the late afternoon and mom was awake. They did pictures, the IPAD, physical therapy...very productive. Mom said, "Yes" and "I'm not" (in reference to pulling on her trach line)... She mouthed Claudia's name on command with a model prompt. I came to meet them late in the evening and mom was still awake. A funny thing with mom is that, she sometimes seems like she isn't paying attention, but as soon as I lower my voice and whisper...she is staring and glaring right at me!!!!! As if to say, "What is Kathy talking about???" Too funny!!!
Mom is now able to assist in her physical therapy on a regular basis. She doesn't have the independent range of motion that she does when we assist her, but she is able to follow the commands to exercise her right side!!!
Mainly, when mom is awake, she is quiet and still and either becomes preoccupied, sleepy, or will sometimes talk (randomly and sporadically) or track conversations with her eyes. Though she is pretty responsive to Anthony and Con on a regular basis. They are the social visitors and Claudia and I are the teachers!!! hahaha!!! No fun!!
The kindness of friends and family continues to astound us and touch our hearts deeply...when I arrived at work today, I found that a colleague of mine spent hours hand-making a book of index cards to use with mom to improve her speech and language skills...it made me cry when I saw it. The prayers and support from you all is priceless and so necessary in order to withstand this ordeal...you just know you what it means to us...we love you all.
"...[may] the autumn rains...clothe...[you] with blessings" Psalm 84:6
Monday, October 4, 2010
Mom Update, October 4, 2010, Monday
Claudia began mom's day early this morning with her physical therapy...mom slept through it all. When I was there with mom today, she was awake for a while.She mouthed, "What do you want?" several times. She was a low talker today again. She asked me to, "Move my pillows" and nodded yes and no. I asked her what my name was, and she responded by mouthing, "Katherine." Other than this, she was asleep most of the rest of the day while I visited and later in the afternoon when dad visited. She did not respond to the speech therapist today so now speech therapy has been canceled as well as occupational and physical therapy. Tonight, Aunt Carol, Tommy and David visited with mom. We all talked to her and she looked at us as we did. She was quiet and had been sleeping when we arrived.
The best news of the day is that mom's vent was lowered to an 8!!! This is good...not much more to lower it until she is off it all together. Please pray that she gets off the vent soon.
"He himself gives life and breath to everything, and he satisfies every need." Acts 17:25
The best news of the day is that mom's vent was lowered to an 8!!! This is good...not much more to lower it until she is off it all together. Please pray that she gets off the vent soon.
"He himself gives life and breath to everything, and he satisfies every need." Acts 17:25
Sunday, October 3, 2010
Mom Update, October 3, 2010, Sunday
Mom had another sleep filled day for the most part. I started her day with her early and stayed with her all day again today...it's been nice being with her all day these last 3 days. She was sound asleep (right through her physical therapy) this morning. She awoke when Anthony and Con and the kids and Lenny arrived at 10:30 and remained awake for an hour before nodding off again until 3:00 when dad arrived. Then she stayed awake until 7:00 p.m. Dad and I left her at 8 and she was sleeping soundly.
Here are the highlights of her day:
When Ant and Con, the kids, Lenny and I were there, she talked to us but sometimes in a mumble and every time in either a low-talking way or by mouthing the words.
When asked, "Are you OK?"
Mom mouthed, "I'm alright, I'm alright"
She told Anthony and Con and the kids, "Good Morning"
I put on the movie, "Forget Paris" and told her and she said, "Forget Paris, very funny"
She said, "Samantha" on request after I modeled her name and said it a few times.
She asked, "Where daddy is?"
When we asked her to open her hand, she did so, 3 or 4 times and also said, "Open"
She made an "L" sound for Lenny
We tried to practice following commands like, "Give me the___" and "Give it to___" and she followed the commands about 3-4 times each one.
She combed my hair, Anthony's hair and Lenny's (and Lenny's mustache!!)
I showed her pictures on the IPAD and asked who the people were.
When I showed her a picture of her, and asked, "Who's that?" She said, "Me" 2 times without prompting
When I showed her a picture of Lenny, Anthony, and Michael G. she said, "Michael" without prompting
She said, "Kathy" when I asked her to.
When she looked at a picture of me, and I asked, "Who's this?" she said, "Me" (we do look alike)
When I showed her a picture of Samantha, she said, "Samantha" on command (repeated it)
At one point, she told me, "You are so fresh!" a few times in a row!!! (For the record, I wasn't being fresh! hahaha I was trying to get her to say words!!)
Later, she told me, "Tell me what to say"
Dad told her to stop touching her trach line and she said, "Why?"
When she saw a picture of keys on the IPAD, she said, "Keys" without prompting.
Con sang "The Sound of Music" and mom laughed and then said, "Sound of Music" at the same time that Con sang the words.
Mom did Flashcards of Vegetables and the Alphabet on the IPAD.
Mom spent about 2 hours listening to music on the ipod on the IPAD with the headphones...she loved it!!! She mouthed a few words at one point, tapped her fingers and feet to the music too. Among other things, she listened to Kenny G and some Jazz music today.
She watched MASH on TV before falling asleep.
"Indeed, the very hairs of your head are all numbered. Don't be afraid; you are worth more than many sparrows." Luke 12:7
Here are the highlights of her day:
When Ant and Con, the kids, Lenny and I were there, she talked to us but sometimes in a mumble and every time in either a low-talking way or by mouthing the words.
When asked, "Are you OK?"
Mom mouthed, "I'm alright, I'm alright"
She told Anthony and Con and the kids, "Good Morning"
I put on the movie, "Forget Paris" and told her and she said, "Forget Paris, very funny"
She said, "Samantha" on request after I modeled her name and said it a few times.
She asked, "Where daddy is?"
When we asked her to open her hand, she did so, 3 or 4 times and also said, "Open"
She made an "L" sound for Lenny
We tried to practice following commands like, "Give me the___" and "Give it to___" and she followed the commands about 3-4 times each one.
She combed my hair, Anthony's hair and Lenny's (and Lenny's mustache!!)
I showed her pictures on the IPAD and asked who the people were.
When I showed her a picture of her, and asked, "Who's that?" She said, "Me" 2 times without prompting
When I showed her a picture of Lenny, Anthony, and Michael G. she said, "Michael" without prompting
She said, "Kathy" when I asked her to.
When she looked at a picture of me, and I asked, "Who's this?" she said, "Me" (we do look alike)
When I showed her a picture of Samantha, she said, "Samantha" on command (repeated it)
At one point, she told me, "You are so fresh!" a few times in a row!!! (For the record, I wasn't being fresh! hahaha I was trying to get her to say words!!)
Later, she told me, "Tell me what to say"
Dad told her to stop touching her trach line and she said, "Why?"
When she saw a picture of keys on the IPAD, she said, "Keys" without prompting.
Con sang "The Sound of Music" and mom laughed and then said, "Sound of Music" at the same time that Con sang the words.
Mom did Flashcards of Vegetables and the Alphabet on the IPAD.
Mom spent about 2 hours listening to music on the ipod on the IPAD with the headphones...she loved it!!! She mouthed a few words at one point, tapped her fingers and feet to the music too. Among other things, she listened to Kenny G and some Jazz music today.
She watched MASH on TV before falling asleep.
"Indeed, the very hairs of your head are all numbered. Don't be afraid; you are worth more than many sparrows." Luke 12:7
Saturday, October 2, 2010
Mom Update, October 2, 2010, Saturday
Mom had a very, very sleepy day today. I was with her from 9:00 a.m. until 2:30 and she slept peacefully the whole time. I brought my laptop and did work while there. Dad came at 1:30 and then Terry at 2:00 and she slept the whole time they were there. I returned at 4:00 just as dad and Terry were leaving. Claudia came shortly thereafter and mom woke up finally! But she seemed exhausted and weak, yet peaceful and cheerful. Claudia and I played with her---joking and laughing and telling stories and singing. It was fun. Anthony, Con, Anthony Michael and Samantha came around 5:00. Claudia was in rare form and making us all laugh so hard!!!
Mom had a doplar sonogram on her legs to check for any clots and it came back negative. The sonogram was done as a precaution since they took her off the Coumadin. Her blood pressure was back to normal today.
Claudia and I played a CD that names body parts, and then another that names functions, in a song and there are coinciding pictures. Then we tried to find out if mom could cut with scissors (the function CD had a picture of some) and she did it alone!!!!!!!!!!!!! She can cut with scissors with no cuing!!!
When Con first arrived, she said hello to mom and asked her what her shirt said, and mom read the word "Brooklyn" and mouthed it to us!!!!!! So she is able to read sometimes!! Anthony and Con brought DVDs of the TV show "Brooklyn Bridge" and she watched that on a portable DVD player and seemed to like it alot.
Yesterday, mom helped Lenny and I do her Physical Therapy on her hands, as I began to work on one hand, she took her hand from Lenny and began to exercise in tandem with her other hand!!
The cleaning lady, who loves mom very much and is such a sweetheart (she is the one who kisses mom and talks to her each day) told us that her grandmother died a few weeks ago. She said that her grandmother was like a mother to her because she had no mother growing up. She was distraught over her death and she said that she used to talk to her grandmother about mom a lot and that they prayed for her too. She said that one night, after her grandmother's death, when she was feeling very sad, she dreamed about mom. She said that, in her dream, mom was dressed in a skirt that came just below her knees and she was walking with a cane and was holding her pocketbook on her arm. She said that mom had on a lot of make up (mom does where a lot of make up) and bright red lipstick (mom does where brightly colored lipstick). Mom told her everything would be alright and that her grandmother was fine. She said she found such comfort in the dream and that when she returned to work and saw mom wasn't in her typical room, she panicked!!! She didn't know that mom's room had changed. She is such a sweetheart. Please pray for comfort for her.
The woman in the bed next to mom commented to her daughter today about what a comfort it is to be with us all during the week. She told her daughter about how we talk to her and help her and sometimes pray with her too.
One of the nurses came into mom's room tonight while we were all there to tell us about her sonogram results and then another nurse came in too. They commented on mom's progress, as did one of the respiratory night therapists (he said it was a miracle). The nurses said that mom performs for people she likes and doesn't perform for anyone she doesn't like!!! They said that mom's room and mom are a comfort place for them all to run to when they need to vent, or chat, or take a break...they meet with mom!!! They said that she is one of the "girlfriends" and that they love her so much and love to talk to her.
Mom was sort of awake when we left her tonight...we all tucked her in and prayed with her standing around her and her bed.... We are blessed in so many ways... especially for all of you family and friends who keep us all in prayer and lift us up in prayer each day. We can't thank everyone enough. xxxooo
To all our family and friends...
‘“The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace.” Numbers 6:24
Mom had a doplar sonogram on her legs to check for any clots and it came back negative. The sonogram was done as a precaution since they took her off the Coumadin. Her blood pressure was back to normal today.
Claudia and I played a CD that names body parts, and then another that names functions, in a song and there are coinciding pictures. Then we tried to find out if mom could cut with scissors (the function CD had a picture of some) and she did it alone!!!!!!!!!!!!! She can cut with scissors with no cuing!!!
When Con first arrived, she said hello to mom and asked her what her shirt said, and mom read the word "Brooklyn" and mouthed it to us!!!!!! So she is able to read sometimes!! Anthony and Con brought DVDs of the TV show "Brooklyn Bridge" and she watched that on a portable DVD player and seemed to like it alot.
Yesterday, mom helped Lenny and I do her Physical Therapy on her hands, as I began to work on one hand, she took her hand from Lenny and began to exercise in tandem with her other hand!!
The cleaning lady, who loves mom very much and is such a sweetheart (she is the one who kisses mom and talks to her each day) told us that her grandmother died a few weeks ago. She said that her grandmother was like a mother to her because she had no mother growing up. She was distraught over her death and she said that she used to talk to her grandmother about mom a lot and that they prayed for her too. She said that one night, after her grandmother's death, when she was feeling very sad, she dreamed about mom. She said that, in her dream, mom was dressed in a skirt that came just below her knees and she was walking with a cane and was holding her pocketbook on her arm. She said that mom had on a lot of make up (mom does where a lot of make up) and bright red lipstick (mom does where brightly colored lipstick). Mom told her everything would be alright and that her grandmother was fine. She said she found such comfort in the dream and that when she returned to work and saw mom wasn't in her typical room, she panicked!!! She didn't know that mom's room had changed. She is such a sweetheart. Please pray for comfort for her.
The woman in the bed next to mom commented to her daughter today about what a comfort it is to be with us all during the week. She told her daughter about how we talk to her and help her and sometimes pray with her too.
One of the nurses came into mom's room tonight while we were all there to tell us about her sonogram results and then another nurse came in too. They commented on mom's progress, as did one of the respiratory night therapists (he said it was a miracle). The nurses said that mom performs for people she likes and doesn't perform for anyone she doesn't like!!! They said that mom's room and mom are a comfort place for them all to run to when they need to vent, or chat, or take a break...they meet with mom!!! They said that she is one of the "girlfriends" and that they love her so much and love to talk to her.
Mom was sort of awake when we left her tonight...we all tucked her in and prayed with her standing around her and her bed.... We are blessed in so many ways... especially for all of you family and friends who keep us all in prayer and lift us up in prayer each day. We can't thank everyone enough. xxxooo
To all our family and friends...
‘“The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace.” Numbers 6:24
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