Mom had a wonderful morning with Claudia. Claudia was crying because she had such a great visit with mom. Mom greeted her with a smile and as Claudia was sitting her up straight in the bed and straightening her out, mom was helping Claudia---grabbing the rails and pulling herself up...! Claudia gave mom her comb and mom combed her own hair!! Then Claudia and mom laughed about a private joke between them---mom belly-laughed so hard! Then Claudia gave mom 2 of the stuffed animals we use for her to hold rather than her trach line, and mom handed one to Claudia and said, "This one's for you" -- it was green and Claudia said, "Why because you think I have a pea head?" Another joke between the 2 of them and mom laughed so hard again. Mom grabbed Claudia's shirt and pointed to her pants where a make up stain was and mom began to try to wipe it off by licking her finger and rubbing it!!! (A mother's spit goes a long way!!! hahaha). Claudia gave mom a glycerin swab for her teeth and mom cleaned her mouth and teeth alone!!! As Claudia cleaned mom's ears, she must have tickled mom and mom said, "Stop that!!!" When the aide came in to see mom and say good morning, mom greeted her and as Claudia talked to the aide about mom's hearing aides and to remember to remove them before showering mom, Claudia said, "She doesn't have them today because they're being fixed" and mom said angrily, "EVERY DAY!!" meaning that she hasn't had them in a few days!!! She was annoyed!! CLaudia explained that they are being fixed. Mom had many happy faces and smiles this morning while Claudia was there. She even was able to change the channels on the TV and insisted on watching some infomercial!! When Claudia left, mom kissed her good bye and replied, "I love you too" when Claudia told her she loved her.
Mom's vent is down to the middle level and on #10 (which is good!!). Pray hard!!! They also came to do the blood work that was ordered by the neurologist too already. Thank God. Pray for no confusion there too please!
Dad and Aunt Sophie visited mom this afternoon and said she was awake but quiet...did say, "Yes" and "no" a few times though. Followed some commands for Occupational and Physical Therapists but not much so they are ending her therapies.... She was very sleepy by the time the speech therapist came too. So she may cancel in a day or 2 or even today as well. They will continue to work on her stiff neck though.
John came to be with mom late afternoon and early evening. They have a good time together. He did her physical therapy and talked and sang, and watched TV. Mom tried to talk to John but not loud enough to understand her (probably tired).
Dad and Aunt Sophie came back after dinner and mom was awake but dad said agitated somewhat (tired...). Lenny and I tucked mom in and prayed over her later this evening...she was out like a light.
"Trust in the LORD for ever: for in the LORD JEHOVAH is everlasting strength" Isaiah 26:4
Thursday, September 30, 2010
Wednesday, September 29, 2010
Mom Update, September 29, 2010, Wednesday
Mom saw the neurologist today, but of course, the visit didn't go without a hitch at the facility. Claudia and dad arrived at the facility at 7:30 a.m. as they were told to. The ambulance was late arriving (mom had to be transported in an ambulance due to the trach and vent). When all was finally settled with the ambulance, Claudia finds out that the ambulance crew had the wrong address to take mom to!!! She went to the nurse's station to let them know and of course she was received with sarcasm and ridicule as usual..."How do YOU know where she's supposed to go?" They finally listen to Claudia and make a few calls...but only to find out that they messed up the appointment---instead of taking mom to the office in Patchogue (a few minutes from where she is), the facility made the appointment in Bayshore---50 minutes away! It's always something!
Mom finally made it to her appointment and looked much calmer when she saw that dad and Claudia were there waiting for her. She looked confused and frightened about the ambulance... even though I tried to tell her what to expect today last night.
The doctor seems fabulous!!! (Dare I say that?) He tries to cure not only with medication if necessary but through natural means as well. He asked what he could do for us, mom...he went over her history very carefully and slowly with dad and Claudia. They told him that her hearing aids are being fixed so they weren't in today. He said that what we are doing with mom is wonderful and to continue and not stop ever! All the cognitive, physical, speech...therapies that our family and friends are doing is great. He said that it is good that she has made and continues to make progress, but he reminded us that on a scale of 1-10 (10 being full recovery), she is still only a 1-1 1/2 or so...but she's only been awake for 3 1/2 weeks. He said that she is definitely awake from the coma now. He said her progress and rate of progress is fine. He said her behavior is or can be typical for someone with a stroke and burst aneurysm--- alert, then foggy...during recovery...however, he is going to check some things out to rule out other factors that may be contributing to her foggy and sleepy states--- he is ordering blood work to check for:
- Ammonia levels
- Thyroid problems
- Lyme's Disease
- B 12
All these levels can cause cognitive issues and sleepiness...
He is also sending her for an EEG to see if the seizure medication is warranted or not (right now she isn't on it any more). He did see that she moved with purpose but wasn't able to do much on command for him (she is usually better focused with us than how she was with him). He saw her use her right and left arms purposefully to do things. The frontal lobe controls decision making and motor planning (we knew this already). It also controls emotions. He prescribed DIAPAT? only if the staff at the facility see her have a seizure. He is ordering a CAT Scan in order to look at what structural damage was done and where so that he can see where the bleed was and the CAT Scan will be given with no contrast. She will go back to see him on November 19. He can't give us any guarantees on her recovery because we don't know much about how the brain works and everyone is different. He had no medical records from the hospital or the facility today...they will be sent to him for review. The facility makes all the appointments for the CAT Scan and EEG...(how comforting...LOL).
All in all, good meeting, productive...new directions. He said there is nothing else our family can do for her other than what we are doing---we are already doing all we can. We need to continue all we are doing and with a drive forward---no slacking!
Sister Suzanne visited mom this afternoon...though it wasn't the best day to come since she was sleepy (she never seems to be alert when poor Suzanne comes! I wish she would be just once!). Dad, Aunt Carol, Aunt Sophie, Lenny and I visited her this afternoon and evening. She slept the whole time except for a few minutes of open eyes. She did kiss us all good-bye but with eyes closed...she looked wiped out and exhausted but in a good way.
Thanks for all the prayers! We keep all of you in prayer as well. Keep praying please.
"For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do." Ephesians 2:10
Mom finally made it to her appointment and looked much calmer when she saw that dad and Claudia were there waiting for her. She looked confused and frightened about the ambulance... even though I tried to tell her what to expect today last night.
The doctor seems fabulous!!! (Dare I say that?) He tries to cure not only with medication if necessary but through natural means as well. He asked what he could do for us, mom...he went over her history very carefully and slowly with dad and Claudia. They told him that her hearing aids are being fixed so they weren't in today. He said that what we are doing with mom is wonderful and to continue and not stop ever! All the cognitive, physical, speech...therapies that our family and friends are doing is great. He said that it is good that she has made and continues to make progress, but he reminded us that on a scale of 1-10 (10 being full recovery), she is still only a 1-1 1/2 or so...but she's only been awake for 3 1/2 weeks. He said that she is definitely awake from the coma now. He said her progress and rate of progress is fine. He said her behavior is or can be typical for someone with a stroke and burst aneurysm--- alert, then foggy...during recovery...however, he is going to check some things out to rule out other factors that may be contributing to her foggy and sleepy states--- he is ordering blood work to check for:
- Ammonia levels
- Thyroid problems
- Lyme's Disease
- B 12
All these levels can cause cognitive issues and sleepiness...
He is also sending her for an EEG to see if the seizure medication is warranted or not (right now she isn't on it any more). He did see that she moved with purpose but wasn't able to do much on command for him (she is usually better focused with us than how she was with him). He saw her use her right and left arms purposefully to do things. The frontal lobe controls decision making and motor planning (we knew this already). It also controls emotions. He prescribed DIAPAT? only if the staff at the facility see her have a seizure. He is ordering a CAT Scan in order to look at what structural damage was done and where so that he can see where the bleed was and the CAT Scan will be given with no contrast. She will go back to see him on November 19. He can't give us any guarantees on her recovery because we don't know much about how the brain works and everyone is different. He had no medical records from the hospital or the facility today...they will be sent to him for review. The facility makes all the appointments for the CAT Scan and EEG...(how comforting...LOL).
All in all, good meeting, productive...new directions. He said there is nothing else our family can do for her other than what we are doing---we are already doing all we can. We need to continue all we are doing and with a drive forward---no slacking!
Sister Suzanne visited mom this afternoon...though it wasn't the best day to come since she was sleepy (she never seems to be alert when poor Suzanne comes! I wish she would be just once!). Dad, Aunt Carol, Aunt Sophie, Lenny and I visited her this afternoon and evening. She slept the whole time except for a few minutes of open eyes. She did kiss us all good-bye but with eyes closed...she looked wiped out and exhausted but in a good way.
Thanks for all the prayers! We keep all of you in prayer as well. Keep praying please.
"For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do." Ephesians 2:10
Tuesday, September 28, 2010
Mom Update, September 28, 2010, Tuesday
Mom had a great day today! When I arrived this morning, she was doing speech therapy with the speech therapist. She showed mom the picture of dad and mom smiled and tenderly touched the picture.The speech therapist was trying to work on helping mom remember what to do with everyday items---at one point, she showed mom a cup---mom didn't model or seem to know what to do with it, so the therapist then put water in the cup and handed it to mom---mom grabbed the cup and brought it to her lips to drink--3 xs!! She wasn't allowed to drink the water due to her trach but she knew what to do with it. Then she tried a toothbrush and mom didn't do anything with it until she put toothpaste on it. Then mom brought it to her mouth and touched her lips with the paste---3xs again. She licked the paste. The first taste of anything in 4 months. When the therapist left, I took out mom's bag of combs and began to comb her hair and cut the back now that her head is away from the pillow. Mom took a comb and began to comb her hair!!!!! Really comb it!!! Then she looked at me with a smile as if to say, "Look what I can do!"
Dad and Aunt Sophie came while I was there. She smiled at them when they arrived. While dad and I did her physical therapy, mom said, "Ow" several times and also "What are you doing to me?" once. She shook her head yes when a nurse asked her a question and also said, "What" several times. I asked her to say, "Sophie" and she said, "I don't want to" 3 xs...but then she said, "Sophie" and then, "Aunt Sophie" --this made Aunt Sophie's day!!! She also said, "Jean" when dad asked her to say his name.
Claudia and Ava visited with her this afternoon and mom was in the Recreation Room. They held hands and sang songs and then mom let go of Ava's hand and tickled her stomach and laughed...so Ava laughed too. Mom did that twice.
When Dad, Aunt Carol and Aunt Sophie returned tonight, mom was holding her "Love Notes for Dotty" book and thumbing through the pages, looking like she was reading.
I found her watching the baseball game tonight when I came to tuck her in. I visited with her until 10 because she was so awake. I tried doing some speech with her and also her physical therapy. I asked her if Ava and Claudia visited her today and she looked at Ava's picture on the wall and said, "Ava." We drew on the dry erase board and mom's writing is more refined then last week. She began weeks ago by making small dots on the board, then dashes, then a string of circles, and today she made a large 2 inch circle that she traced over and over---twice. We said prayers, and I tucked her in for the night.
Tomorrow morning, mom goes to the neurologist with dad and Claudia for a check up. She is going by ambulance to his office. I tried to explain all that to her tonight. I hope she understands and doesn't get afraid.
"There is a time for everything, and a season for every activity under heaven:...a time to laugh...a time to dance" Ecclesiastes 3:1, 4
Dad and Aunt Sophie came while I was there. She smiled at them when they arrived. While dad and I did her physical therapy, mom said, "Ow" several times and also "What are you doing to me?" once. She shook her head yes when a nurse asked her a question and also said, "What" several times. I asked her to say, "Sophie" and she said, "I don't want to" 3 xs...but then she said, "Sophie" and then, "Aunt Sophie" --this made Aunt Sophie's day!!! She also said, "Jean" when dad asked her to say his name.
Claudia and Ava visited with her this afternoon and mom was in the Recreation Room. They held hands and sang songs and then mom let go of Ava's hand and tickled her stomach and laughed...so Ava laughed too. Mom did that twice.
When Dad, Aunt Carol and Aunt Sophie returned tonight, mom was holding her "Love Notes for Dotty" book and thumbing through the pages, looking like she was reading.
I found her watching the baseball game tonight when I came to tuck her in. I visited with her until 10 because she was so awake. I tried doing some speech with her and also her physical therapy. I asked her if Ava and Claudia visited her today and she looked at Ava's picture on the wall and said, "Ava." We drew on the dry erase board and mom's writing is more refined then last week. She began weeks ago by making small dots on the board, then dashes, then a string of circles, and today she made a large 2 inch circle that she traced over and over---twice. We said prayers, and I tucked her in for the night.
Tomorrow morning, mom goes to the neurologist with dad and Claudia for a check up. She is going by ambulance to his office. I tried to explain all that to her tonight. I hope she understands and doesn't get afraid.
"There is a time for everything, and a season for every activity under heaven:...a time to laugh...a time to dance" Ecclesiastes 3:1, 4
Monday, September 27, 2010
Mom Update, September 27, 2010, Monday
Mom had a sleepy day. Claudia saw her early this morning and did her physical therapy and gave her a massage. Anthony saw her next and said she was receiving therapy--so he sat in on the tail end of it. He cheered her on and coaxed her to focus. He said she had a hard time focusing today. The therapist told Anthony that mom's progress is good and that her behavior of being really aware and talking to being foggy and sleeping is typical with a head injury of her kind. But she said that mom should improve a lot just at a slower pace. Dad and Aunt Sophie saw mom next and also did her physical therapy and talked and watched TV with her. Dad said that mom was sleeping a lot but then woke up and wanted the "Love Notes for Dotty" book so he began to read the book to her but mom took it from his hands and began turning the pages and looking at it herself. No talking today. I saw mom late this evening and she was out like a light. I tucked her in and prayed over her and turned out the light--but left the TV on but on the timer.
"We give thanks to you, O God, we give thanks, for your Name is near; men tell of your wonderful deeds." Psalm 75:1
"We give thanks to you, O God, we give thanks, for your Name is near; men tell of your wonderful deeds." Psalm 75:1
Sunday, September 26, 2010
Mom Update, September 26, 2010, Sunday
I'll warn you ahead of time to grab the tissues for this beautiful day in our lives...
Today is Samantha's birthday. Sammy-girl is the baby of the family and she turned 13 today. Aside from Mom's birthday in August, which was sad yet beautiful (look at the update on the blog http://dottysupdates-kgranelli.blogspot.com), Sam's birthday is the first of the grandchildren's birthdays with mom in the state she is in. Typically, on our birthdays--especially the grandkids', we have cake together...usually at mom and dad's house. This morning, when I woke, I prayed to God that the day would be a joyous one for our Sammy. She is a beautiful girl with the wit and humor of her dad (my brother), and a heart that is larger than many I've ever seen. Sam is always there to help. She has the family gift of serving others. When Anthony and Con and Anthony Michael and Sam reached mom early this morning, they told her it was Sammy's birthday, and God answered my prayer, because mom said, "It's my birthday too." Anthony said, "Oh it's your birthday too mom?" and mom gave him an annoyed look and said, "Noooo" This is a family joke on our birthdays...it's from an old "I Love Lucy" episode where Lucy is in Italy and she is mourning little Ricky's birthday in New York while she is in Italy and a young neighborhood boy tells her it's his birthday so she throws him a party in honor of Little Ricky--the next thing you know, all the kids in the neighborhood are saying, "It'sa my birthday too!" It seemed that mom was referring to this family joke. Then, mom looked at Sam and said, "Happy Birthday." Sammy called to tell me and I began to cry. God is good. And sometimes when our plans and desires match His...there is bliss. Mom also mouthed to them, "Where's Poppy?" as she looked for my dad.
The love affair between mom and dad still shines even now, and sometimes, it makes me cry. Dad still sits by my mom's side each and every day telling her, "I love you" and "How's my girl?" And mom still holds dad's hand and brushes it against her face, and once in a while, even kisses it.
As they visited with mom, she motioned that she wanted the "Love Notes for Dotty" book that I started for her at the request and idea of Flo, her dear friend. They gave her the book and mom opened it and began to run her finger across the words on each line as though reading....Anthony said he was wondering if she was actually reading the book, when all of a sudden, her fingers scanned across the words, "I miss you so much" and mom read aloud, "sooo much." She read the book!!!!!!!!!
She soon fell asleep and Anthony said she appeared to have a bad dream---because she wrinkled her face and jolted her legs and arms as though she was having that dream when you are falling. When she woke up, she was no longer happy, but agitated and foggy. By the time dad, Claudia, Terry and Aunt Sophie arrived, mom was still sort of foggy and sleepy.
Lenny and I arrived in the evening as everyone else was leaving. Mom was awake and alert. Lenny played with the IPAD with her and she kept mouthing something but not loud enough to hear her. Lenny asked her, "Do you want to say something?" and she said, "No." She played the IPAD game where you have to guess the word that goes in the sentence. Sometimes she did it all alone--manipulated and guessed. Sometimes she held Lenny's hand and moved it to point to an answer.
She became sleepy, so we tucked her in after doing physical therapy with her (everyone else did the PT too). We said our prayers. We anointed her. Then we put the night light on and left a Mary Tyler Moore DVD playing in the DVD player. She kissed us both good night and we left.
Today we celebrated the Feast of Tabernacles at my church...it is a feast that reminds us that God dwells with us and in us. Surely, God was in this place today with our family.
"...Christ in you, the hope of glory." Colossians 1:27
Today is Samantha's birthday. Sammy-girl is the baby of the family and she turned 13 today. Aside from Mom's birthday in August, which was sad yet beautiful (look at the update on the blog http://dottysupdates-kgranelli.blogspot.com), Sam's birthday is the first of the grandchildren's birthdays with mom in the state she is in. Typically, on our birthdays--especially the grandkids', we have cake together...usually at mom and dad's house. This morning, when I woke, I prayed to God that the day would be a joyous one for our Sammy. She is a beautiful girl with the wit and humor of her dad (my brother), and a heart that is larger than many I've ever seen. Sam is always there to help. She has the family gift of serving others. When Anthony and Con and Anthony Michael and Sam reached mom early this morning, they told her it was Sammy's birthday, and God answered my prayer, because mom said, "It's my birthday too." Anthony said, "Oh it's your birthday too mom?" and mom gave him an annoyed look and said, "Noooo" This is a family joke on our birthdays...it's from an old "I Love Lucy" episode where Lucy is in Italy and she is mourning little Ricky's birthday in New York while she is in Italy and a young neighborhood boy tells her it's his birthday so she throws him a party in honor of Little Ricky--the next thing you know, all the kids in the neighborhood are saying, "It'sa my birthday too!" It seemed that mom was referring to this family joke. Then, mom looked at Sam and said, "Happy Birthday." Sammy called to tell me and I began to cry. God is good. And sometimes when our plans and desires match His...there is bliss. Mom also mouthed to them, "Where's Poppy?" as she looked for my dad.
The love affair between mom and dad still shines even now, and sometimes, it makes me cry. Dad still sits by my mom's side each and every day telling her, "I love you" and "How's my girl?" And mom still holds dad's hand and brushes it against her face, and once in a while, even kisses it.
As they visited with mom, she motioned that she wanted the "Love Notes for Dotty" book that I started for her at the request and idea of Flo, her dear friend. They gave her the book and mom opened it and began to run her finger across the words on each line as though reading....Anthony said he was wondering if she was actually reading the book, when all of a sudden, her fingers scanned across the words, "I miss you so much" and mom read aloud, "sooo much." She read the book!!!!!!!!!
She soon fell asleep and Anthony said she appeared to have a bad dream---because she wrinkled her face and jolted her legs and arms as though she was having that dream when you are falling. When she woke up, she was no longer happy, but agitated and foggy. By the time dad, Claudia, Terry and Aunt Sophie arrived, mom was still sort of foggy and sleepy.
Lenny and I arrived in the evening as everyone else was leaving. Mom was awake and alert. Lenny played with the IPAD with her and she kept mouthing something but not loud enough to hear her. Lenny asked her, "Do you want to say something?" and she said, "No." She played the IPAD game where you have to guess the word that goes in the sentence. Sometimes she did it all alone--manipulated and guessed. Sometimes she held Lenny's hand and moved it to point to an answer.
She became sleepy, so we tucked her in after doing physical therapy with her (everyone else did the PT too). We said our prayers. We anointed her. Then we put the night light on and left a Mary Tyler Moore DVD playing in the DVD player. She kissed us both good night and we left.
Today we celebrated the Feast of Tabernacles at my church...it is a feast that reminds us that God dwells with us and in us. Surely, God was in this place today with our family.
"...Christ in you, the hope of glory." Colossians 1:27
Saturday, September 25, 2010
Mom Update, September 25, 2010, Saturday
Mom had a wonderful day today. She is still alert and awake for the most part, and happier as well. She smiled at us a lot today. I did some aromatherapy with her last night and had her smell the frankincense and rose of sharon oils I have (both of which are said to improve attitude). I also rubbed some on her as well.
Angelo, Madeline and JoAnn visited her this afternoon with dad and I. Anthony, Con and the kids were already there with mom. Terry came later in the afternoon. Mom smiled a lot at Angelo's jokes along with his now infamous rendition of "Come Meet the Mets!" She seemed to know who he was. At one point, Angelo asked mom, "Hey, Dotty, where's Frank Sinatra?" This is a nickname he gave Claudia's son Jean years ago. Mom did not speak a response but smiled and pointed with her index finger extended perfectly to Jean's picture on the wall!!!!!!!!!!! Many connections made in order to do that and a lot of memory involved as well!! She kissed Madeline and JoAnn and even grabbed JoAnn's hair and pulled it as a joke when we were kidding with her. Angelo also asked her, "Are you going to sleep?" at one point, and mom answered, "No, I'm staying up" very quietly. Dad said to mom, "I love you, do you love me?" and mom replied, "Yes."
Two physical therapists came to give mom physical therapy today too. They commented on how wonderful her range of motion is. I sat in on the session and observed and participated in the activities. They asked mom to take a cone from a stack in one person's hand and pass it to me by placing it on a stack in my hand and then do the opposite. She was able to do this with great concentration, determination and a lot of encouragement from me. She did it oh so slowly, but she did it. She was also able to lift her leg a bit independently and to push her upper body backwards toward the pillows --- all on command!!!
Later, after JoAnn, Angelo and Madeline left, mom spent a lot of time playing games on the IPAD with Terry. She even used her fingers to progress through the games!!! All on her own!! She enjoyed the CONCENTRATION/MEMORY card game and the object flashcards most of all.
We had yet another incident with the nurses there...it seems the aggravation just doesn't end. It was over a misunderstanding but it was aggravating just the same. Dad and I and Anthony managed to iron everything out in the end...but first we had to get forceful and assertive.
When we left mom, I put on Crossing Delancy, one of our favorite movies... Lenny will check in on her after the movies with friends tonight later. Madeline, JoAnn and Angelo couldn't get over her progress since they last saw her.
"I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust." Psalm 91:2
Angelo, Madeline and JoAnn visited her this afternoon with dad and I. Anthony, Con and the kids were already there with mom. Terry came later in the afternoon. Mom smiled a lot at Angelo's jokes along with his now infamous rendition of "Come Meet the Mets!" She seemed to know who he was. At one point, Angelo asked mom, "Hey, Dotty, where's Frank Sinatra?" This is a nickname he gave Claudia's son Jean years ago. Mom did not speak a response but smiled and pointed with her index finger extended perfectly to Jean's picture on the wall!!!!!!!!!!! Many connections made in order to do that and a lot of memory involved as well!! She kissed Madeline and JoAnn and even grabbed JoAnn's hair and pulled it as a joke when we were kidding with her. Angelo also asked her, "Are you going to sleep?" at one point, and mom answered, "No, I'm staying up" very quietly. Dad said to mom, "I love you, do you love me?" and mom replied, "Yes."
Two physical therapists came to give mom physical therapy today too. They commented on how wonderful her range of motion is. I sat in on the session and observed and participated in the activities. They asked mom to take a cone from a stack in one person's hand and pass it to me by placing it on a stack in my hand and then do the opposite. She was able to do this with great concentration, determination and a lot of encouragement from me. She did it oh so slowly, but she did it. She was also able to lift her leg a bit independently and to push her upper body backwards toward the pillows --- all on command!!!
Later, after JoAnn, Angelo and Madeline left, mom spent a lot of time playing games on the IPAD with Terry. She even used her fingers to progress through the games!!! All on her own!! She enjoyed the CONCENTRATION/MEMORY card game and the object flashcards most of all.
We had yet another incident with the nurses there...it seems the aggravation just doesn't end. It was over a misunderstanding but it was aggravating just the same. Dad and I and Anthony managed to iron everything out in the end...but first we had to get forceful and assertive.
When we left mom, I put on Crossing Delancy, one of our favorite movies... Lenny will check in on her after the movies with friends tonight later. Madeline, JoAnn and Angelo couldn't get over her progress since they last saw her.
"I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust." Psalm 91:2
Thursday, September 23, 2010
Mom Update, September 23, 2010, Thursday
I visited mom early this morning before work and got her ready for the day and did her first round of physical therapy for the day. She was sleepy and slept through it all. As I pulled up the blinds, I realized how nice it is for her to have a bed near the window...she can see outside and I was reminded that she hasn't been outside in over 3 months. I dare say this is the longest she has ever been away from her home in her life.
Dad visited with mom next and said that her eyes were closed at first so he began her physical therapy because he had a hunch that she really wasn't sleeping... Sure enough, though she maintained her "eyes closed" state for a while, as dad lifted her leg under her knee to do leg lifts, she began to giggle a bit! Sometimes, when she doesn't want to do something or see someone, she closes her eyes as if asleep! Dad said that she wasn't cooperating with the therapists at one point which was frustrating. She held his hand as he talked to her and they watched TV all afternoon, and slept intermittently (both of them!!). When dad leaves her now, she reaches for his hand...he said it is hard to leave her now that she is awake...especially since she can't really talk well enough to say how she feels.
John visited with mom next. They watched TV together...a baseball game. He talked to her and did her physical therapy... Her eyes were open for their entire visit but she only mumbled a few times and didn't really talk.
Tomorrow is our 3rd Team Meeting with the staff and doctor and building administrator around 10:30 a.m. Please keep us in prayer at that time. Thanks. Love to all.
“Give thanks to the Lord, call on his name; make known among the nations what he has done, and proclaim that his name is exalted. Sing to the Lord, for he has done glorious things; let this be known to all the world." Isaiah 12:4-5
Dad visited with mom next and said that her eyes were closed at first so he began her physical therapy because he had a hunch that she really wasn't sleeping... Sure enough, though she maintained her "eyes closed" state for a while, as dad lifted her leg under her knee to do leg lifts, she began to giggle a bit! Sometimes, when she doesn't want to do something or see someone, she closes her eyes as if asleep! Dad said that she wasn't cooperating with the therapists at one point which was frustrating. She held his hand as he talked to her and they watched TV all afternoon, and slept intermittently (both of them!!). When dad leaves her now, she reaches for his hand...he said it is hard to leave her now that she is awake...especially since she can't really talk well enough to say how she feels.
John visited with mom next. They watched TV together...a baseball game. He talked to her and did her physical therapy... Her eyes were open for their entire visit but she only mumbled a few times and didn't really talk.
Tomorrow is our 3rd Team Meeting with the staff and doctor and building administrator around 10:30 a.m. Please keep us in prayer at that time. Thanks. Love to all.
“Give thanks to the Lord, call on his name; make known among the nations what he has done, and proclaim that his name is exalted. Sing to the Lord, for he has done glorious things; let this be known to all the world." Isaiah 12:4-5
Wednesday, September 22, 2010
Mom Update, September 22, 2010, Wednesday
Claudia began the day with mom early this morning before work and said that mom was very sleepy this morning. Though she didn't open her eyes during physical therapy, she reacted to Claudia by pulling her left hand away and jerking her foot away from Claudia and moving her leg off the bed by bending her knee.
Anthony saw mom next in the late morning. He talked with her and did her 2nd round of physical therapy. He said that she used her left hand on and off and that she kissed him hello and gave him a partial hug. She touched his face and looked at him when he spoke. She also rested her hand on his shoulder. Her mood seemed better and she appeared to be more rested as well (no more noisy roommate). When I saw dad later he said that her whole demeanor was better today!!
Dad joined Anthony next and they both talked to mom and watched TV. Dad said she tracked each person as he talked and seemed to appear to be trying to follow the conversation.
The speech therapist came to work with mom as did the occupational therapist and physical therapist. The occupational therapist is trying to get mom to sit straight in her chair (not reclined) and said mom does well. I have noticed that mom has been trying to lift herself up off the bed or chair at times using her upper body near her neck and shoulders. She is getting stronger.
I came in the mid afternoon but mom was sleeping (she had just finished therapy). Dad and I let her rest. After dinner, Lenny and I joined dad at mom's again. She was wide awake and obviously adoring dad---holding his hand, kissing his hand, staring at him, smiling at him. She looked intently at Lenny as he told her about college and that Suzanne is one of his teachers (Mom lifted her eyebrows way up in surprise and happiness at that news). He told her about an narrative essay he wrote about her for his English class and she just touched him and stroked his beard and stared at him as he talked (once in a while she'd turn from him momentarily but he'd call her attention back on him again). She still isn't happy with me though!! I guess I am the task master in her eyes!! She will even turn toward the wall sometimes when I talk to her!! Sometimes it is as if she is a little kid with the way she acts!! Sometimes this is cute and funny to me, but other times, when I am tired, this hurts.
Everyone at the facility continues to talk about the strides she has made and continues to make daily!! She is a miracle. I am glad that she is enjoying her new room so much. Her new roommate is very quiet.
"The LORD is the strength of his people; he is the saving refuge of his anointed." Psalm 28:8
Anthony saw mom next in the late morning. He talked with her and did her 2nd round of physical therapy. He said that she used her left hand on and off and that she kissed him hello and gave him a partial hug. She touched his face and looked at him when he spoke. She also rested her hand on his shoulder. Her mood seemed better and she appeared to be more rested as well (no more noisy roommate). When I saw dad later he said that her whole demeanor was better today!!
Dad joined Anthony next and they both talked to mom and watched TV. Dad said she tracked each person as he talked and seemed to appear to be trying to follow the conversation.
The speech therapist came to work with mom as did the occupational therapist and physical therapist. The occupational therapist is trying to get mom to sit straight in her chair (not reclined) and said mom does well. I have noticed that mom has been trying to lift herself up off the bed or chair at times using her upper body near her neck and shoulders. She is getting stronger.
I came in the mid afternoon but mom was sleeping (she had just finished therapy). Dad and I let her rest. After dinner, Lenny and I joined dad at mom's again. She was wide awake and obviously adoring dad---holding his hand, kissing his hand, staring at him, smiling at him. She looked intently at Lenny as he told her about college and that Suzanne is one of his teachers (Mom lifted her eyebrows way up in surprise and happiness at that news). He told her about an narrative essay he wrote about her for his English class and she just touched him and stroked his beard and stared at him as he talked (once in a while she'd turn from him momentarily but he'd call her attention back on him again). She still isn't happy with me though!! I guess I am the task master in her eyes!! She will even turn toward the wall sometimes when I talk to her!! Sometimes it is as if she is a little kid with the way she acts!! Sometimes this is cute and funny to me, but other times, when I am tired, this hurts.
Everyone at the facility continues to talk about the strides she has made and continues to make daily!! She is a miracle. I am glad that she is enjoying her new room so much. Her new roommate is very quiet.
"The LORD is the strength of his people; he is the saving refuge of his anointed." Psalm 28:8
Mom Update, September 21, 2010, Tuesday
Mom has a new room as of Wednesday---she was moved to 165 B. We had been experiencing difficulties with her current roommate. While we pray for her roommate and feel badly for her, we need to watch out for mom at this time, so when we were offered the opportunity to change her room, we took it. Anthony and Claudia and Dad moved all her pictures and belongings to the new room today. She now has a "room with a view" as she is in the bed by the window now. Her old roommate was crying when she heard mom was leaving...so sad. But as you remember, she was loud, uncontrollable---pulling out her trach constantly, in need of extensive help from the nurses (constantly setting off her bells and in need of 4 male nurses for assistance..), and she also used to "flash" the men in the family (Anthony Michael included) and me. Please keep her in prayer.
Claudia started the day with mom and readied her for the day. She said mom opened her eyes and looked at her during physical therapy but was otherwise quiet. The night nurse reported that mom gestured that she wanted the "Love Notes for Dotty" book that we started for mom (I began reading it to her last week). The nurse said she had continued reading it to mom during the night. She said that, last night, she read the note from Laura and the kids and showed mom Joshua's picture he drew of "Aunt Dorothy in the pool with him" and mom chuckled at how cute it was and said, "Ohhhhh....." The nurse also told Claudia that mom has been scheduled to see a neurologist in Patchogue next Wednesday, September 29 at 9:15 a.m. We aren't sure why---but again, isn't it a coincidence that once we became forceful, now mom is seeing a neurologist. Claudia and Dad will be accompanying her. Her OXYGEN and CO2 levels were great!!! Keep praying that she continues to improve and gets off the vent.
Anthony came to see mom next and said she watched TV with him and he talked to her but she didn't talk to him at all. The speech therapist came to work with her but reported that mom wasn't responding today.
Dad, Aunt Carol and I met Claudia and Anthony later in the midafternoon. Claudia said that mom worked on the IPAD with her using hand-over-hand prompting and seemed to enjoy it. Claudia bought a new pair of eyeglasses for mom and dad said that maybe they shouldn't have bought another pair of progressive lens because it would be hard to see and adjust the classes accordingly, but as dad was saying this, mom moved the glasses down her nose to see the TV and when the IPAD time came, she slid them back up her nose to see better!!
While Dad, Claudia, and Aunt Carol went to dinner, Donna came to see my mom but said she slept the whole time she was there.
I saw mom at 9 p.m. to tuck her in. We are noticing that, sometimes, when mom doesn't want to do something or see someone, she closes her eyes---at times it's like she is faking sleep. She didn't talk to me tonight but was awake when I arrived and was watching TV. Again, she knew what I was there for and handed me her hearing aid! I put the timer on the TV and talked to her and did her physical therapy and moved a few more things to her new room. We said our prayers and I tucked her in and shut the lights. We all do feel that she is not talking to us on purpose at times though...not always, but definitely sometimes. I pray for a cooperative, motivated attitude would come forth in her so that she gets well...
"And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified youd to share in the inheritance of the saints in the kingdom of light." Colossians 1:10-12
Claudia started the day with mom and readied her for the day. She said mom opened her eyes and looked at her during physical therapy but was otherwise quiet. The night nurse reported that mom gestured that she wanted the "Love Notes for Dotty" book that we started for mom (I began reading it to her last week). The nurse said she had continued reading it to mom during the night. She said that, last night, she read the note from Laura and the kids and showed mom Joshua's picture he drew of "Aunt Dorothy in the pool with him" and mom chuckled at how cute it was and said, "Ohhhhh....." The nurse also told Claudia that mom has been scheduled to see a neurologist in Patchogue next Wednesday, September 29 at 9:15 a.m. We aren't sure why---but again, isn't it a coincidence that once we became forceful, now mom is seeing a neurologist. Claudia and Dad will be accompanying her. Her OXYGEN and CO2 levels were great!!! Keep praying that she continues to improve and gets off the vent.
Anthony came to see mom next and said she watched TV with him and he talked to her but she didn't talk to him at all. The speech therapist came to work with her but reported that mom wasn't responding today.
Dad, Aunt Carol and I met Claudia and Anthony later in the midafternoon. Claudia said that mom worked on the IPAD with her using hand-over-hand prompting and seemed to enjoy it. Claudia bought a new pair of eyeglasses for mom and dad said that maybe they shouldn't have bought another pair of progressive lens because it would be hard to see and adjust the classes accordingly, but as dad was saying this, mom moved the glasses down her nose to see the TV and when the IPAD time came, she slid them back up her nose to see better!!
While Dad, Claudia, and Aunt Carol went to dinner, Donna came to see my mom but said she slept the whole time she was there.
I saw mom at 9 p.m. to tuck her in. We are noticing that, sometimes, when mom doesn't want to do something or see someone, she closes her eyes---at times it's like she is faking sleep. She didn't talk to me tonight but was awake when I arrived and was watching TV. Again, she knew what I was there for and handed me her hearing aid! I put the timer on the TV and talked to her and did her physical therapy and moved a few more things to her new room. We said our prayers and I tucked her in and shut the lights. We all do feel that she is not talking to us on purpose at times though...not always, but definitely sometimes. I pray for a cooperative, motivated attitude would come forth in her so that she gets well...
"And we pray this in order that you may live a life worthy of the Lord and may please him in every way: bearing fruit in every good work, growing in the knowledge of God, being strengthened with all power according to his glorious might so that you may have great endurance and patience, and joyfully giving thanks to the Father, who has qualified youd to share in the inheritance of the saints in the kingdom of light." Colossians 1:10-12
Monday, September 20, 2010
Mom Update, September 20, 2010, Monday
Claudia started mom's day with physical therapy and hearing aids and glasses...but said that she slept through the whole process. Claudia said that one of the head nurses came to discuss the bed rail saga again with her----Claudia said we want mom in the bed she is in with the 2 of 4 side rails up or we'd all sleep there and hang out 24 hours a day! Claudia did say though that the respiratory therapist remarked at how well mom is doing and told her to look at the ventilator---it is down to 10 from 16 (this is really good!!!!). He said that her CO2 levels were at 42 which is the high end of normal so they are watching her carefully. PRAY THAT MOM LEAVES THE TRACH ALONE AND DOESN"T PULL ON IT ANYMORE AND THAT SHE BREATHS ON HER OWN!!!!!!!!!! Please.
Dad saw mom next...I don't know how he does it---he runs from their house to the center twice a day. He refuses to stay at my house (which is 10 mins. away from the center, while his house is 50 mins. or better the way he drives). They held hands and watched TV just like they do at home. Dad did mom's physical therapy 3 times today. He said that mom told the nurse, when the speech therapist held up a picture of him, that dad is, "my husband." Dad said that the physical therapist (wow where has he been in all these months??) and the Speech therapist were working with her this afternoon. The occupational therapist worked with her as well.
When I arrived in the afternoon, the head nurse stopped me to tell me that what ever our family wants for mom is fine. She said they are concerned that she may get a bruise on her hand if she hits the rails since she is on coumadin---I said she'd be in worse shape if she fell from the bed and bruised her head.
It is amazing how one visit to the building administrator (coupled with a request to have a full team meeting that includes the administrator and doctor) gets so much accomplished!!! I just hate that we all need to get so assertive and uncharacteristically forceful in order to get mom only what she deserves to get and should be getting. I find this so distressing.
The nurse said that she visited mom today and that she said, "Good afternoon Mrs. Gilman" and mom replied, "Good Afternoon" and then the nurse said that they are all so pleased of the progress mom makes each day--and mom said, "Thank you very much."
When I arrived tonight, I put MOONSTRUCK on (a family favorite) and talked to mom and told her I love her and stroked her hair and face...she was sleepy looking. She acts like a small child who is caught misbehaving whenever I arrive now...and she still grabs my hair and earring!! Even though we were chatting and watching TV, she seemed to know the routine so she took her hearing aids out and handed them to me!! My cousin, JoAnn, suggested putting the TV on a timer so that she doesn't always associate me with no TV!!
She looked the best I have ever seen her since this whole nightmare began.
Praise the Lord.a
Praise God in his sanctuary;
praise him in his mighty heavens.
"Praise him for his acts of power...let everything that has breath praise the Lord" Psalm 150:1-2, 6
Dad saw mom next...I don't know how he does it---he runs from their house to the center twice a day. He refuses to stay at my house (which is 10 mins. away from the center, while his house is 50 mins. or better the way he drives). They held hands and watched TV just like they do at home. Dad did mom's physical therapy 3 times today. He said that mom told the nurse, when the speech therapist held up a picture of him, that dad is, "my husband." Dad said that the physical therapist (wow where has he been in all these months??) and the Speech therapist were working with her this afternoon. The occupational therapist worked with her as well.
When I arrived in the afternoon, the head nurse stopped me to tell me that what ever our family wants for mom is fine. She said they are concerned that she may get a bruise on her hand if she hits the rails since she is on coumadin---I said she'd be in worse shape if she fell from the bed and bruised her head.
It is amazing how one visit to the building administrator (coupled with a request to have a full team meeting that includes the administrator and doctor) gets so much accomplished!!! I just hate that we all need to get so assertive and uncharacteristically forceful in order to get mom only what she deserves to get and should be getting. I find this so distressing.
The nurse said that she visited mom today and that she said, "Good afternoon Mrs. Gilman" and mom replied, "Good Afternoon" and then the nurse said that they are all so pleased of the progress mom makes each day--and mom said, "Thank you very much."
When I arrived tonight, I put MOONSTRUCK on (a family favorite) and talked to mom and told her I love her and stroked her hair and face...she was sleepy looking. She acts like a small child who is caught misbehaving whenever I arrive now...and she still grabs my hair and earring!! Even though we were chatting and watching TV, she seemed to know the routine so she took her hearing aids out and handed them to me!! My cousin, JoAnn, suggested putting the TV on a timer so that she doesn't always associate me with no TV!!
She looked the best I have ever seen her since this whole nightmare began.
Praise the Lord.a
Praise God in his sanctuary;
praise him in his mighty heavens.
"Praise him for his acts of power...let everything that has breath praise the Lord" Psalm 150:1-2, 6
Sunday, September 19, 2010
Mom Update, September 18 & 19, 2010
Hello Everyone!
I heard from many of you that there was no update yesterday---sorry! I am combining the events of the past 2 days together today.
Lenny went to mom both days early in the morning and readied her for the day. He is so wonderful to watch with mom when he works with her. I am so proud of him. He has the natural knack for teaching. Again today, while he worked with her, he was able to make the necessary adaptations to the IPAD game he was playing with her and he had her interacting so well with both him and the game. They played a game that had you point to sounds---then trace the correct letter---mom was 75% accurate.
Anthony, Con and the kids, along with Claudia, saw mom yesterday too. They all reported that she was sleepy most of the day. Today, they all came to see mom again, but Ava and John came too. Each party of people did her physical therapy along with other activities. Today, Fiddler on the Roof was playing on TV and John asked mom if she remembered doing that show with him years ago, and mom said, "Yeah" and when John asked if she remembered playing a specific role, mom said, "No" but she was correct!!! Claudia remembered the role she did play and said, "Mom you're right! You played another role" and named the role to which mom said, "Yup." Then, everyone sang the songs from Fiddler to mom as they came on the movie. The kids played the guitar and sang to mom next. Some of the time yesterday, it was too loud in the room to hear what mom was saying (her roommate gets rather loud and also frequently needs the assistance of a team of CNAs and nurses). Mom said, "Everyone" when the family all walked in this morning, and she said, "Yeah, what?" when they called her over the course of the day. At one point, mom picked up the call bell on her bed and, seeing the red button on the top, put it to Anthony's lips like lipstick!! She pushed the on/off switch on the remote control several times (something Lenny and the Occupational Therapist have worked on with mom), and laughed a few good belly laughs at a MASH episode she and Claudia watched and also at funny things Anthony and Claudia said to her. When she was asked, "What's the matter mom?" She replied, "Nothing."
Dad and I had the most relaxing and wonderful time upstate. Though we were only there 24 hours, it felt like a week. We saw mom this afternoon with Terry. Mom spent a lot of time, with me, writing on the dry-erase board---making circles (sometimes in imitation and sometimes as a young child would make them, all in a row as if trying to write in script!), she also tried to imitate a 'D' and a 'T' as well...though awkward, she did a fine approximation!! When I first arrived, she wasn't so happy to see me---I think she associates me with work now (and also no TV at night)! As I did her physical therapy during the first 1/2 I visited her, she grabbed my hair and pulled it and then she grabbed my ear and pulled it too!! I laughed and asked her if she was scolding me!! Whatever! As long as she gets well soon. I miss her terribly...we all do.
"....In solemn truth I tell you that in so far as you rendered such services to one of the humblest of these my brethren, you rendered them to myself.' Matthew 25:40
I heard from many of you that there was no update yesterday---sorry! I am combining the events of the past 2 days together today.
Lenny went to mom both days early in the morning and readied her for the day. He is so wonderful to watch with mom when he works with her. I am so proud of him. He has the natural knack for teaching. Again today, while he worked with her, he was able to make the necessary adaptations to the IPAD game he was playing with her and he had her interacting so well with both him and the game. They played a game that had you point to sounds---then trace the correct letter---mom was 75% accurate.
Anthony, Con and the kids, along with Claudia, saw mom yesterday too. They all reported that she was sleepy most of the day. Today, they all came to see mom again, but Ava and John came too. Each party of people did her physical therapy along with other activities. Today, Fiddler on the Roof was playing on TV and John asked mom if she remembered doing that show with him years ago, and mom said, "Yeah" and when John asked if she remembered playing a specific role, mom said, "No" but she was correct!!! Claudia remembered the role she did play and said, "Mom you're right! You played another role" and named the role to which mom said, "Yup." Then, everyone sang the songs from Fiddler to mom as they came on the movie. The kids played the guitar and sang to mom next. Some of the time yesterday, it was too loud in the room to hear what mom was saying (her roommate gets rather loud and also frequently needs the assistance of a team of CNAs and nurses). Mom said, "Everyone" when the family all walked in this morning, and she said, "Yeah, what?" when they called her over the course of the day. At one point, mom picked up the call bell on her bed and, seeing the red button on the top, put it to Anthony's lips like lipstick!! She pushed the on/off switch on the remote control several times (something Lenny and the Occupational Therapist have worked on with mom), and laughed a few good belly laughs at a MASH episode she and Claudia watched and also at funny things Anthony and Claudia said to her. When she was asked, "What's the matter mom?" She replied, "Nothing."
Dad and I had the most relaxing and wonderful time upstate. Though we were only there 24 hours, it felt like a week. We saw mom this afternoon with Terry. Mom spent a lot of time, with me, writing on the dry-erase board---making circles (sometimes in imitation and sometimes as a young child would make them, all in a row as if trying to write in script!), she also tried to imitate a 'D' and a 'T' as well...though awkward, she did a fine approximation!! When I first arrived, she wasn't so happy to see me---I think she associates me with work now (and also no TV at night)! As I did her physical therapy during the first 1/2 I visited her, she grabbed my hair and pulled it and then she grabbed my ear and pulled it too!! I laughed and asked her if she was scolding me!! Whatever! As long as she gets well soon. I miss her terribly...we all do.
"....In solemn truth I tell you that in so far as you rendered such services to one of the humblest of these my brethren, you rendered them to myself.' Matthew 25:40
Friday, September 17, 2010
Mom Update, September 17, 2010, Friday
Claudia started mom's day early this morning and reported that mom was sleepy...very sleepy. She did her physical therapy. Anthony and Con visited mom next. They found that mom was very sleepy too but that she sometimes looked at them and tracked them in between cat naps. Anthony and Con were telling mom how Anthony Michael and Samantha are taking Spanish at school and then he said, "Mom, I bet you didn't know that I am studying Spanish now too. Listen... Taco, burrito, enchilada..." Mom gave out a loud belly laugh that shook her whole body at that one!! Anthony always manages to be the funniest of people! Lenny came to visit mom next and said that she was very sleepy as well but that she perked up enough to do Occupational Therapy again today. During OT, mom learned how to use the remote control!! Lenny proudly showed both Anthony and Con and the Occupational Therapist how mom unzips the IPAD case independently twice. She waved good bye when therapy was over using her whole hand. Lenny was afraid that the therapist would quit OT like we have the feeling that the speech person is about to again, so he began to tell her all about all the things mom can do now and how well and how the sleepiness isn't indicative of all she knows and can do. The OT assured him that, for one thing, it is hard to do therapy in her room due to all the loud noise from her roommate. She also said that sleeping at this point is helping her heal and that her progress will be in a rest---awake---rest---awake type of cycle now. What seems inconsistent in her progress is actually the brain rewiring and rebalancing itself. She said mom is doing really well and to just be patient. Lenny did his psychology homework---reading while visiting with mom --- so she is learning about Psychology 100 now too! Dad came while Lenny was there and mom loves to see dad. She kisses him and holds his hand so tightly that she won't let go. The respiratory therapist, who we like, said mom is doing well also and that the more she talks the more her lungs will build up. Dad came back to visit mom after dinner and I met him there. When I arrived, mom was WIDE AWAKE!! yippeee! I didn't have the IPAD because it floats between us all until we buy a safe to lock it in in her room. But...the bed rails were down again!!!!! Dad and I both complained and dad even became stern with the head nurse (a male nurse) about it. He said it is a guideline from Medicare and Medicaid MDS and that he will be sure to keep the rails up until her new bed comes and we'd talk more about it all then. He said since she is on Coumadin that she could hit her hand on the rail and bruise it badly. I said the bruise on her head if she fell from the bed would be a lot worse!!! When I initially asked about the rails being down, I was told it was part of a "sleep study" that was being done since Wednesday to see experimentally who moved how much during sleep---from what I could see, they took the rails down and didn't leave anyone to watch the patients as they slept!!! Unbelievable. The rails are up now. Lenny and Hingwa will go check on mom later this evening.
Dad and I are going upstate Saturday morning and returning on Sunday. Either Claudia, Ava or Lenny will do the update.
"God comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us." 2 Corinthians 1:4
Dad and I are going upstate Saturday morning and returning on Sunday. Either Claudia, Ava or Lenny will do the update.
"God comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us." 2 Corinthians 1:4
Thursday, September 16, 2010
Mom Update, September 16, 2010, Thursday
A sleepy day today from the sound of things. I saw mom before work this morning early. She was asleep and stayed asleep right through her physical therapy. I readied her for the day, prayed over her, and left for work. Anthony came next to see her and talked to her for a while before she was moved to the chair and fell asleep again. Jean came next and sang to her. Dad and Aunt Carol came to see her too and said she was quiet but tracked them when they spoke to her. They said she did say, "What" a few times though. Claudia ran in to visit a bit in the afternoon too. Claudia said that the speech therapist reported that mom was not so talkative today and that she felt mom was perseverating on movements like "Touch your nose" and not really following a command today (sounds like she is getting ready to stop working with her again to me!!). Ridiculous to think that someone can't get better with the help of therapy and that it just happens all by itself! We all do a better job at rehabilitating mom then any of the therapists there do anyway. It just gets your hopes up when they come around initially. Lenny and I came to tuck mom in tonight. We did her physical therapy and she slept through it! She had a big day yesterday and must be exhausted today.
No return phone calls from either the building administrator or the social worker. Dad did say that the social worker told him she'd be in touch with me regarding meeting with all of them. Anthony and Claudia mentioned that we should get together for another team meeting with everyone again but to include the building administrator at the meeting too.
The night nurse said that as of a day ago, all the blood sugar tests have stopped. No more insulin of any kind ever for mom---discontinued. This is good news indeed. Also, I forgot to mention Tuesday that they are putting silver nitrate on the trach area because mom had a small growth there that they said is typical.
I have to admit that I am disappointed that mom is not steadily talking more and more, or even the same amount as Sunday, each day. I went to the administrator to get bed rails for mom or to keep them and somehow he turned it into a session on getting therapies for mom...I don't know how she performed for the administrator yesterday when he came back to see her.
I need to refocus on the fact that, all I do for mom is for the purpose of making her life better on any given day.
Lenny and Ava attended the Investiture Ceremony at St. Joseph's tonight. They looked adorable in their caps and gowns.
Pray that mom is moved by joy tomorrow and that she begins to talk more and make more progress again.
"The LORD says, "I will rescue those who love me. I will protect those who trust in my name." Psalm 91:14
No return phone calls from either the building administrator or the social worker. Dad did say that the social worker told him she'd be in touch with me regarding meeting with all of them. Anthony and Claudia mentioned that we should get together for another team meeting with everyone again but to include the building administrator at the meeting too.
The night nurse said that as of a day ago, all the blood sugar tests have stopped. No more insulin of any kind ever for mom---discontinued. This is good news indeed. Also, I forgot to mention Tuesday that they are putting silver nitrate on the trach area because mom had a small growth there that they said is typical.
I have to admit that I am disappointed that mom is not steadily talking more and more, or even the same amount as Sunday, each day. I went to the administrator to get bed rails for mom or to keep them and somehow he turned it into a session on getting therapies for mom...I don't know how she performed for the administrator yesterday when he came back to see her.
I need to refocus on the fact that, all I do for mom is for the purpose of making her life better on any given day.
Lenny and Ava attended the Investiture Ceremony at St. Joseph's tonight. They looked adorable in their caps and gowns.
Pray that mom is moved by joy tomorrow and that she begins to talk more and make more progress again.
"The LORD says, "I will rescue those who love me. I will protect those who trust in my name." Psalm 91:14
Wednesday, September 15, 2010
Mom Update, September 15, 2010, Wednesday
Mom started her day bright and early with a visit from Claudia who readied her for the day ahead (eyeglasses, physical therapy, massage, hearing aids...). She reported that mom was sleepy and not talking. Dad saw mom next and he said that she was moving around alot!! More than usual. He said that the Occupational Therapist came in to evaluate her today---which consisted of her asking mom to raise her right arm and mom did, and then her left arm and mom did. She then replied that she'd be back tomorrow and left. The Social Worker came in next to report to dad that the facility was ordering an oversized bed for mom with NO BED RAILS and a special mattress that would hold her in the bed better. They are also going to put huge bolsters on the bed for the pillow propping for mom's arms and edema and mats on the floor on each side of the bed so that, if mom falls out of the bed, she'll land on the mats. GOD HELP ME!!! This nonsense is exasperating!!! In the meantime, when I arrived there tonight at 8, mom's window was open with only a screen between her, her roommate and the outdoors---they are on the first floor!!!!!!!!! The billing department called me today and wasted hours on the phone with me nastily telling me that the insurance I got for mom didn't pay any of her $12,000 a month in copays. After multiple attempts at reaching the insurance company, I come to find out that the facility billed the wrong policy!!!!! I phoned the Social Worker tonight to tell her to talk to the building administrator who told us mom would have the rails on the bed and then to call me back. I was fit to be tied!!!!!!!!!!!! This situation needs to be bathed in prayer!!! Also, the hospital supposedly sent all mom's records to her primary doctor a month ago and the primary doctor says they don't have them, but the hospital said they were sent as per a phone conversation I had with them today.
On happier notes, Dad said that mom went to the Recreation Room this afternoon with the wonderful recreation therapist (God bless her!!!). MOM PLAYED NINTENDO WII BOWLING!!!!! She loved it!! She didn't want to give up the remote control when her time was up. She also loved watching the other people playing as well. Dad said she said "Yes" and "No" a few times but nothing else.
I was worried about mom's affect and lack of talking but found out tonight that Anthony said she had to have insulin shots yesterday and the day before!!!!!!!!!!!! BINGO????
Tonight, after venting to dad, I went to see mom. Lenny met me there. I had so much fun with her!! Lenny showed her the IPAD and asked if she "wanted to play." She took it from him then gave it back to him to hold and proceeded to UNZIP the case it was in all alone!!! She kissed me and Lenny and told Lenny that she loved him...saying, "I love you." She explored Lenny's beard and mustache and arm hair (which is much thicker lately) tactually after he pointed his facial hair out to her because he thought she didn't recognize him. He almost started to cry when he thought she didn't recognize him or know him---thank God she kissed him and said, "I love you" after that. She explored my face and stroked it too. We played alphabet, numbers, and drawing on the IPAD and she seemed interested and tried to do it alone several times as well. She sneezed to HUGE sneezes out loud at one point too. Then, Lenny and I did her physical therapy while listening to some of her favorite music---Barry Manilow, Carpenters, John Denver and gospel music as we sang to her and danced with her. One of the cranky nurses came in to take her blood pressure which was 118 over 76 and she was soooooo nice!!!! She morphed over night! hahaha!! As she talked to us about her son, she told us he has autism.... what a small world. Mom listened intently to the conversation, occasionally moving her hands to the nurse. Mom is such a blessing. The nurse told her she will be better very soon and would be off the trach in no time and commented on the miracle mom is. After she left, I told mom to talk as much as possible and to move around so she can get off the trach. I told her how well she is doing and that God has a call on her life to have made such a miracle through her.
We readied her for bed then and tucked her in...we prayed with her and shut the lights and kissed her good night.
I just need guidance...insurance, bed rails, red tape...garbage. How to proceed??? How to keep mom safe...
"If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt..."
James 1:5-6
On happier notes, Dad said that mom went to the Recreation Room this afternoon with the wonderful recreation therapist (God bless her!!!). MOM PLAYED NINTENDO WII BOWLING!!!!! She loved it!! She didn't want to give up the remote control when her time was up. She also loved watching the other people playing as well. Dad said she said "Yes" and "No" a few times but nothing else.
I was worried about mom's affect and lack of talking but found out tonight that Anthony said she had to have insulin shots yesterday and the day before!!!!!!!!!!!! BINGO????
Tonight, after venting to dad, I went to see mom. Lenny met me there. I had so much fun with her!! Lenny showed her the IPAD and asked if she "wanted to play." She took it from him then gave it back to him to hold and proceeded to UNZIP the case it was in all alone!!! She kissed me and Lenny and told Lenny that she loved him...saying, "I love you." She explored Lenny's beard and mustache and arm hair (which is much thicker lately) tactually after he pointed his facial hair out to her because he thought she didn't recognize him. He almost started to cry when he thought she didn't recognize him or know him---thank God she kissed him and said, "I love you" after that. She explored my face and stroked it too. We played alphabet, numbers, and drawing on the IPAD and she seemed interested and tried to do it alone several times as well. She sneezed to HUGE sneezes out loud at one point too. Then, Lenny and I did her physical therapy while listening to some of her favorite music---Barry Manilow, Carpenters, John Denver and gospel music as we sang to her and danced with her. One of the cranky nurses came in to take her blood pressure which was 118 over 76 and she was soooooo nice!!!! She morphed over night! hahaha!! As she talked to us about her son, she told us he has autism.... what a small world. Mom listened intently to the conversation, occasionally moving her hands to the nurse. Mom is such a blessing. The nurse told her she will be better very soon and would be off the trach in no time and commented on the miracle mom is. After she left, I told mom to talk as much as possible and to move around so she can get off the trach. I told her how well she is doing and that God has a call on her life to have made such a miracle through her.
We readied her for bed then and tucked her in...we prayed with her and shut the lights and kissed her good night.
I just need guidance...insurance, bed rails, red tape...garbage. How to proceed??? How to keep mom safe...
"If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. But when he asks, he must believe and not doubt..."
James 1:5-6
Tuesday, September 14, 2010
Mom Update, September 14, 2010, Tuesday
Claudia saw mom early this morning and did her physical therapy and the IPAD with her. Ava came next around 9 and visited until 12. She did some physical therapy and the IPAD as well. Anthony came around 10:30 and stayed until 1:00. When I arrived at noon, Anthony and Ava had mom laughing!!! A real belly laugh!! Out loud too! Anthony was telling her that soon she'd be saying, "See ya!" and waving to the people at the facility because she would be going home. They both said she seemed sad and pointed to the trach a few times when asked why she is sad today. Anthony and Ava also tried writing with mom on the dry erase board with markers. She held the marker and made random marks on the board a few times but then handed them the marker and said, "Help" because she wanted it closed and put away. She kissed Ava good-bye when she left. Anthony and I played with the IPAD with her. She was identifying vegetables and a picture of Bok Choy came on the screen... I said, "Boy, I don't know what that is!!" Mom said, "Cabbage." When Anthony left, she kissed him and said, "Bye." Later, I did the Drawing Pad on the IPAD---mom seemed to like it a lot and manipulated the program alone on and off as well! She mumbled something to me 4 times during that time but I couldn't hear what she said. Mom's night nurse wrote in her "Love Notes to Dotty" book that she "caught" mom playing with one of her stuffed pigs last night when she walked in!!! She was playing with Olivia, the pirate pig (she sleeps with the pigs too). We have 2 long stuffed pigs that we give to mom to hold when she sleeps and is just resting so she doesn't hold the trach. Dad came around 2 and Maureen came around 2:30ish. Mom said, "Hello" to Maureen and gave her a kiss. Mom pushed her hearing aid back in her ear when it came out (twice) and frequently adjusted her eye glasses. Con, Anthony Michael, Samantha and Sam's friend, Emily, came tonight to see mom. They said she was relaxed but relatively still and quiet. She either seems tired or sad at times today. It is exhausting to exist and do the things we take for granted. Please continue to pray for strength and joy in mom.
The bed rail saga....the rails were down this morning again. We complained to everyone. Each person gave us a different story as to why they needed to be down---but all included that it was against the patient's human rights and a form of restraint. No matter who we spoke to, no one would tell us who had the final say or who else to talk to. Finally, in answer to prayer, one of our inside angels told me to go to the Building CEO/ Administrator...I did go. It took me almost an hour of waiting before I saw him but he made time for me. He was appalled that the rails were down and that people took the guideline to the degree they did without regard for individuality. He was also shocked that no therapy has been given to mom by the facility. He called the head person in therapy and told that person to do a personal evaluation and assessment on mom tomorrow. He was sad that no one really gets excited by the steps mom is taking all along and said that they all should give us hope and encouragement along the way. He also said that mom will always have enough green diapers as well. Then, he walked to mom's room with me to meet her. It was 3:40 by now and mom was tired but she looked at him when he walked in and said hello and she smiled at him as well. She was totally pooped by then. He stayed with Dad, Maureen and I for quite a while chatting and getting to know mom. He said he'd be by to see her tomorrow morning and midday to assess her at different times of the day as well. He gave me his cell phone number and said we can call or text him any time with problems. He said they should be working side by side with us and that no one should have given us things to do with mom and walked away. He also commented that they all should think outside the box and if Medicaid/Medicare does not approve therapy...they should at least provide something several times a week if not every day.
It was an exhausting and long day for me. I tucked mom in at 9 p.m. and Lenny and I are on our way back to make sure the rails are up now. Thanks for the prayers. Keep praying for joy and strength and improvement. And that mom knocks the administrator's socks off tomorrow when he comes to see her.
"...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
The bed rail saga....the rails were down this morning again. We complained to everyone. Each person gave us a different story as to why they needed to be down---but all included that it was against the patient's human rights and a form of restraint. No matter who we spoke to, no one would tell us who had the final say or who else to talk to. Finally, in answer to prayer, one of our inside angels told me to go to the Building CEO/ Administrator...I did go. It took me almost an hour of waiting before I saw him but he made time for me. He was appalled that the rails were down and that people took the guideline to the degree they did without regard for individuality. He was also shocked that no therapy has been given to mom by the facility. He called the head person in therapy and told that person to do a personal evaluation and assessment on mom tomorrow. He was sad that no one really gets excited by the steps mom is taking all along and said that they all should give us hope and encouragement along the way. He also said that mom will always have enough green diapers as well. Then, he walked to mom's room with me to meet her. It was 3:40 by now and mom was tired but she looked at him when he walked in and said hello and she smiled at him as well. She was totally pooped by then. He stayed with Dad, Maureen and I for quite a while chatting and getting to know mom. He said he'd be by to see her tomorrow morning and midday to assess her at different times of the day as well. He gave me his cell phone number and said we can call or text him any time with problems. He said they should be working side by side with us and that no one should have given us things to do with mom and walked away. He also commented that they all should think outside the box and if Medicaid/Medicare does not approve therapy...they should at least provide something several times a week if not every day.
It was an exhausting and long day for me. I tucked mom in at 9 p.m. and Lenny and I are on our way back to make sure the rails are up now. Thanks for the prayers. Keep praying for joy and strength and improvement. And that mom knocks the administrator's socks off tomorrow when he comes to see her.
"...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31
Monday, September 13, 2010
Mom Update, September 13, 2010, Monday
The miracle continues!!
Claudia saw mom early this morning and readied her for the day. She did her physical and cognitive therapies (cognitive using the IPAD). While she was with mom, mom took her eyeglasses off and placed them on the bed and said, "I want.... I want...." out loud. Claudia said, "Your glasses?" Mom said, "Yes." She loves the IPAD but sometimes has difficulty isolating her index finger to point at the screen and touch it. Sometimes, she uses her whole fist, or several fingers at once to manipulate it...but she DOES do it on her own alot. Other times, we offer her hand-over-hand assistance or do it for her.
The speech therapist worked with mom next!!! She's back!! While working with mom, she wrote that mom said, "Good morning" to her, followed commands to touch whatever..., when she showed mom a picture of dad and asked, "What's his name?" mom said, "Jean" and when the therapist said, "Who is he?" mom said, "My husband."
Then, when I was with mom in the early afternoon, one of the respiratory therapists came to check her out and commented that she is a true miracle and she is doing phenomenally well and that in 14 weeks she is doing so much more than is typical. That 14 weeks is no time at all given her injury and all she is doing. All the nurses and CNAs keep coming in and out and waving to her, talking, and saying what a miracle she is too. While I was there, mom grabbed my dress, my shirt, my bracelet, and my necklace and I said, "What? Pretty?" and she said, "Yes!" When one of the CNAs came into the room and asked how she is, mom replied, "OK" and the aide started to cry. Mom and I played with the IPAD --- did cognitive therapy (letters, numbers, vegetables, and emotions). I am not telling dad this, but mom initially looked sad to me when I first arrived. I finally asked her, "Mom, why are you so sad today??" and she silently pointed at the trach. This happened twice. I assured her that it was only temporary and that she is getting better and better every day. I told her to look me in the eyes and when she did, I told her that I promise she would be off the trach very soon and that the more she talks and breathes deeply, the sooner she'd be off it. So pray that she gets a spirit of joy and that she stops worrying about it.
Fay, mom's faithful friend from choir, came to see mom next. Dad came in the late afternoon too. Dad asked her for a kiss and she gave him a loud, smacking one!! She loves to hold his hands...both of them at once. Fay and Dad talked to mom. I left before they did so I don't know if Fay sang to mom, but she usually does.
Donna and Tom came after dinner. They did some physical and cognitive therapy. They tried to have mom write on the dry erase board but mom didn't want to do much with it so she turned her head from it and them! Then, at one point, she took the rolled up towels we use to keep her hands open and wiped the board clean!!! She did that twice!!! I guess she may have been thinking, "Which part of 'I don't want to do this' don't you get?" hahaha!! She held some picture cards in one hand (2 or 3 at once in one hand) and Donna and Tom were amazed at her dexterity. Tom said she did well and that she should give him a high 5 and she did it 3 times!!! When it was time for them to leave, they said they were going and mom said, "OK" and they asked if she wanted them to come back and she said, "Yes" and then she said "Good bye."
I came back to see mom and tuck her in around 8:30-9:00 and found her bed rails down. I almost died!!! I found out that it is now a NYS law that no patient can have the bed rails up or on their bed at all because it infringes on their human rights and is considered to be a form of restraint!!!!!!!!!!!!!!!!!!!!!!!!!! I made a fuss and got permission to keep the rails up for tonight and was told that dad needs to sign a form stating the same thing. RIDICULOUS!!! Classic example of a good thing gone bad. Mom was awake and watching TV through sleepy eyes. I got her ready for bed (put glasses away, took out hearing aids, dimmed the lights...), said our prayers and kissed her good night.
The miracle continues. Keep praying. love to all!!!!!!!!!! xxxxxxooooooo
"...he is never far from any one of us." Acts 17:27
Claudia saw mom early this morning and readied her for the day. She did her physical and cognitive therapies (cognitive using the IPAD). While she was with mom, mom took her eyeglasses off and placed them on the bed and said, "I want.... I want...." out loud. Claudia said, "Your glasses?" Mom said, "Yes." She loves the IPAD but sometimes has difficulty isolating her index finger to point at the screen and touch it. Sometimes, she uses her whole fist, or several fingers at once to manipulate it...but she DOES do it on her own alot. Other times, we offer her hand-over-hand assistance or do it for her.
The speech therapist worked with mom next!!! She's back!! While working with mom, she wrote that mom said, "Good morning" to her, followed commands to touch whatever..., when she showed mom a picture of dad and asked, "What's his name?" mom said, "Jean" and when the therapist said, "Who is he?" mom said, "My husband."
Then, when I was with mom in the early afternoon, one of the respiratory therapists came to check her out and commented that she is a true miracle and she is doing phenomenally well and that in 14 weeks she is doing so much more than is typical. That 14 weeks is no time at all given her injury and all she is doing. All the nurses and CNAs keep coming in and out and waving to her, talking, and saying what a miracle she is too. While I was there, mom grabbed my dress, my shirt, my bracelet, and my necklace and I said, "What? Pretty?" and she said, "Yes!" When one of the CNAs came into the room and asked how she is, mom replied, "OK" and the aide started to cry. Mom and I played with the IPAD --- did cognitive therapy (letters, numbers, vegetables, and emotions). I am not telling dad this, but mom initially looked sad to me when I first arrived. I finally asked her, "Mom, why are you so sad today??" and she silently pointed at the trach. This happened twice. I assured her that it was only temporary and that she is getting better and better every day. I told her to look me in the eyes and when she did, I told her that I promise she would be off the trach very soon and that the more she talks and breathes deeply, the sooner she'd be off it. So pray that she gets a spirit of joy and that she stops worrying about it.
Fay, mom's faithful friend from choir, came to see mom next. Dad came in the late afternoon too. Dad asked her for a kiss and she gave him a loud, smacking one!! She loves to hold his hands...both of them at once. Fay and Dad talked to mom. I left before they did so I don't know if Fay sang to mom, but she usually does.
Donna and Tom came after dinner. They did some physical and cognitive therapy. They tried to have mom write on the dry erase board but mom didn't want to do much with it so she turned her head from it and them! Then, at one point, she took the rolled up towels we use to keep her hands open and wiped the board clean!!! She did that twice!!! I guess she may have been thinking, "Which part of 'I don't want to do this' don't you get?" hahaha!! She held some picture cards in one hand (2 or 3 at once in one hand) and Donna and Tom were amazed at her dexterity. Tom said she did well and that she should give him a high 5 and she did it 3 times!!! When it was time for them to leave, they said they were going and mom said, "OK" and they asked if she wanted them to come back and she said, "Yes" and then she said "Good bye."
I came back to see mom and tuck her in around 8:30-9:00 and found her bed rails down. I almost died!!! I found out that it is now a NYS law that no patient can have the bed rails up or on their bed at all because it infringes on their human rights and is considered to be a form of restraint!!!!!!!!!!!!!!!!!!!!!!!!!! I made a fuss and got permission to keep the rails up for tonight and was told that dad needs to sign a form stating the same thing. RIDICULOUS!!! Classic example of a good thing gone bad. Mom was awake and watching TV through sleepy eyes. I got her ready for bed (put glasses away, took out hearing aids, dimmed the lights...), said our prayers and kissed her good night.
The miracle continues. Keep praying. love to all!!!!!!!!!! xxxxxxooooooo
"...he is never far from any one of us." Acts 17:27
Sunday, September 12, 2010
Mom Update, September 12, 2010, Sunday
MOM IS TALKING!!!!!!!!!!!!!!!!!!!! PTL!!!!!!!!!!!!!!!!!!!!!!!!!!!! YAHHOOOOOOO!!!!!!
When I arrived there early this morning, mom was being washed and dressed for the day. Her door was closed but I could hear the nurses gathered around mom and talking to her. One of the nurses came outside her room and said, "Oh boy, your mom is doing soooo good today!! I came into the room and said, 'Hi Mrs. Gilman, how are you?' and she told me, "GOOD!" She is doing soooo good all because of you and your family. All because of what you are doing for her. Keep doing it. She will be talking very soon, I just know it."
I was thrilled and went outside to call everyone and tell them. When I came back in, mom was ready to see me...so I walked into her room and she was "bright eyed and bushy tailed" and I said, "Hi mom. Hi mommy. It's me, It's Kathy, your daughter" she was staring right in my eyes and smiling at me. I stroked her face and hair as I always do and I said, "I'm Kathy" and she said, "I know." WOW!!! So I grabbed her hand and kissed it and said, "Oh I love you!!!!" and she said, "I love you too" Then I talked to her some more and she looked at me and asked, "How old are you?" and I told her, "51" and this seemed to surprise her. I held her hand in mine and she began to study my face, then she touched my eyes and then her eyes over and over. I said, "I have make up on my eyes. Do you want your make up too?" and she said, "Noooo" in a disgusted way. Then it hit me!!!!!! "Oh....do you want your eye glasses???" I asked. And she said, "Yes." I ran to tell everyone that she was talking and then John, Claudia and Ava arrived. Shortly after, Anthony, Con and Sammy arrived (Anthony Michael was camping with the Boy Scouts at Valley Forge). Dad and then Terry came too. She then proceeded to talk to us all. Some of what she said was, "What do you want?" "What?" "Yes" "Proud of you" and then, at one point, we all lined up and leaned our cheeks, one at a time, in to her mouth and she kissed each one of us and said, "I love you" to each one!!!!!!!!!!!!!!! We were crying tears of joy. I still am.
We played with the IPAD with her---she loves it!!! It talks for her and to her, we play matching games, shape, letter, color, number, item recognition games, we play the piano on it, music on it, movies...there is so much to use it for that helps with her speech and cognitive skill development. We did her physical therapy, though it was hard to do something like that when she was talking to us now---but all of that is still so vitally important for her in her recovery.
Florence and Karen visited her in the afternoon but she was tired by then and didn't really talk to them. Though dad said her eyes were open the whole time.
Dad came to my house for dinner and then went home. Claudia and Ava went back to visit mom in the early evening and played IPAD games with her and Sounds at Home audio CD with matching picture cards---when the CD played the sound of ice cubes falling in a glass, mom took the ice cube picture and put it to her mouth and touched her tongue with her finger --- Claudia and Ava felt so badly---they told her, "Sorry mom, but you can't have anything to eat or drink yet."
When Lenny and I went back later to tuck her in and pray over and with her, the nurse came to take her blood pressure and woke her out of a sound sleep. The nurse said, "You are some family. She is well because of all of you. Dotty, you raised great kids. You are a lucky woman, but I think you know that already." I said, "Thanks,we try." She said, "Yeah, you tried, but you DID it!!! You all succeeded."
It isn't over yet by far...she has a long way to go. She has to learn how to chew and swallow and walk and talk and everything else all over again. I am off from work on Tuesdays and Fridays...so good days to visit mom are Mondays, Wednesdays and especially Thursdays late afternoon or midday or mornings. We are looking for a place to keep the IPAD at the center so we all can use it with mom for cognitive and speech therapy. We don't know where to keep it yet though and are waiting for the social worker to get back to me.
Hallelujah, Hallelujah, Hallelujah, Hallelujah!!!!
"For great is the LORD and most worthy of praise" 1 Chronicles 16:25
When I arrived there early this morning, mom was being washed and dressed for the day. Her door was closed but I could hear the nurses gathered around mom and talking to her. One of the nurses came outside her room and said, "Oh boy, your mom is doing soooo good today!! I came into the room and said, 'Hi Mrs. Gilman, how are you?' and she told me, "GOOD!" She is doing soooo good all because of you and your family. All because of what you are doing for her. Keep doing it. She will be talking very soon, I just know it."
I was thrilled and went outside to call everyone and tell them. When I came back in, mom was ready to see me...so I walked into her room and she was "bright eyed and bushy tailed" and I said, "Hi mom. Hi mommy. It's me, It's Kathy, your daughter" she was staring right in my eyes and smiling at me. I stroked her face and hair as I always do and I said, "I'm Kathy" and she said, "I know." WOW!!! So I grabbed her hand and kissed it and said, "Oh I love you!!!!" and she said, "I love you too" Then I talked to her some more and she looked at me and asked, "How old are you?" and I told her, "51" and this seemed to surprise her. I held her hand in mine and she began to study my face, then she touched my eyes and then her eyes over and over. I said, "I have make up on my eyes. Do you want your make up too?" and she said, "Noooo" in a disgusted way. Then it hit me!!!!!! "Oh....do you want your eye glasses???" I asked. And she said, "Yes." I ran to tell everyone that she was talking and then John, Claudia and Ava arrived. Shortly after, Anthony, Con and Sammy arrived (Anthony Michael was camping with the Boy Scouts at Valley Forge). Dad and then Terry came too. She then proceeded to talk to us all. Some of what she said was, "What do you want?" "What?" "Yes" "Proud of you" and then, at one point, we all lined up and leaned our cheeks, one at a time, in to her mouth and she kissed each one of us and said, "I love you" to each one!!!!!!!!!!!!!!! We were crying tears of joy. I still am.
We played with the IPAD with her---she loves it!!! It talks for her and to her, we play matching games, shape, letter, color, number, item recognition games, we play the piano on it, music on it, movies...there is so much to use it for that helps with her speech and cognitive skill development. We did her physical therapy, though it was hard to do something like that when she was talking to us now---but all of that is still so vitally important for her in her recovery.
Florence and Karen visited her in the afternoon but she was tired by then and didn't really talk to them. Though dad said her eyes were open the whole time.
Dad came to my house for dinner and then went home. Claudia and Ava went back to visit mom in the early evening and played IPAD games with her and Sounds at Home audio CD with matching picture cards---when the CD played the sound of ice cubes falling in a glass, mom took the ice cube picture and put it to her mouth and touched her tongue with her finger --- Claudia and Ava felt so badly---they told her, "Sorry mom, but you can't have anything to eat or drink yet."
When Lenny and I went back later to tuck her in and pray over and with her, the nurse came to take her blood pressure and woke her out of a sound sleep. The nurse said, "You are some family. She is well because of all of you. Dotty, you raised great kids. You are a lucky woman, but I think you know that already." I said, "Thanks,we try." She said, "Yeah, you tried, but you DID it!!! You all succeeded."
It isn't over yet by far...she has a long way to go. She has to learn how to chew and swallow and walk and talk and everything else all over again. I am off from work on Tuesdays and Fridays...so good days to visit mom are Mondays, Wednesdays and especially Thursdays late afternoon or midday or mornings. We are looking for a place to keep the IPAD at the center so we all can use it with mom for cognitive and speech therapy. We don't know where to keep it yet though and are waiting for the social worker to get back to me.
Hallelujah, Hallelujah, Hallelujah, Hallelujah!!!!
"For great is the LORD and most worthy of praise" 1 Chronicles 16:25
Saturday, September 11, 2010
Mom Update, September 11, 2010, Saturday
She was awake today!!! Yipppeeee!!!
I saw mom early this morning and we "played" with the IPAD we all chipped in and bought for her. She likes it. She seemed, judging by her face, to be intrigued by it. She tentatively tapped the screen with several fingers at once or gently with the butt end of her fist...she wasn't so sure about it. We probably did too much too! It was the first time I was using it with her and using it at all...so I tried many of the applications. There are several applications on it that involve the alphabet...you touch a letter in a string of the alphabet and it turns into a large version of the letter along with making the letter's sound and a picture to go with it. Touch the screen again and another picture appears coinciding with the same letter as before. Some pictures progressively do things as you repeatedly touch them. Other applications deal with pictures of items or animals and their sounds. I bought many applications!! Some even involve writing!! However, the writing ones seemed to confuse mom a bit because you write with your finger and not a writing tool. It is amazing how mom knows so much already...like, she knew what to do with the marker on the dry erase board (knew how to hold it correctly and what to do with it), she knows where she places things when she puts them down and she also knows where things are when she drops them on the bed. Unlike an infant, she does NOT put things in her mouth. Yet, in some ways, she is, indeed on an infant-like level. Well, mom and I played with the IPAD for an hour and 10 minutes...then she grew tired so I did her physical therapy as she listened to music on the IPAD using ear buds (all of my pictures and music are on her IPAD!!). We really didn't get to do an eighth of what the IPAD can do! I left and then Anthony and Con and Sammy came to see mom. They said she was awake again and very relaxed. They talked with her and did her physical therapy again before leaving hours later. Dad and Terry came next and did the same---more talking, physical therapy, watching TV... Dad came to my house and we went to Friendlys for dinner...then for a ride by the bay to check out the sunset and people fishing and crabbing and the sailboats on the bay...it was a gorgeous night. After dad left, I went back to see mom again. I tried some verbal cognitive therapy like, "Touch nose" or "Touch mouth" or "Do this" while making a face with my mouth. She only touched nose 3 xs. She was getting tired. At first, I didn't realize it, until a young nurse came into the room and asked if mom was "awake" to which I said yes and he replied, "I thought so! She grabs my hand when I talk to her now. This is a real miracle." He also asked how long she was in a coma. He said she is amazing. But, another older nurse came into the room to take mom's vitals...she was one of the nurses months ago who was sassy to me when I questioned the "Parkinson's med" that was given to mom. She was so rude at the time. Now she stood near mom and cooed to her and said she is with her every night...then she said, "And this is your daughter. She's here every day too---bothering you every minute like kids do and she pokes at you and moves you around and gives you no peace" --- she wasn't kidding around either. I made believe that she was though and laughed. It is so difficult sometimes to do that...to just make believe that I don't perceive the sarcasm and nastiness that exudes from so many there. Many are that way while others are caring but don't seem to know what to do for mom. I pray that God would give me His Heart for them. I also pray that I refocus on mom and not my missing her...it's all about her not me at this time. While I am ever thankful for mom's recovery, there are times like tonight, when I leave that place and just sit in my car and cry. Hmm...I didn't mean to end on such a sad-sack note! I am, indeed, thankful for mom and her recovery. She truly IS a miracle.
"Glory to God in the highest, and on earth peace to men on whom his favor rests." Luke 2:14
I saw mom early this morning and we "played" with the IPAD we all chipped in and bought for her. She likes it. She seemed, judging by her face, to be intrigued by it. She tentatively tapped the screen with several fingers at once or gently with the butt end of her fist...she wasn't so sure about it. We probably did too much too! It was the first time I was using it with her and using it at all...so I tried many of the applications. There are several applications on it that involve the alphabet...you touch a letter in a string of the alphabet and it turns into a large version of the letter along with making the letter's sound and a picture to go with it. Touch the screen again and another picture appears coinciding with the same letter as before. Some pictures progressively do things as you repeatedly touch them. Other applications deal with pictures of items or animals and their sounds. I bought many applications!! Some even involve writing!! However, the writing ones seemed to confuse mom a bit because you write with your finger and not a writing tool. It is amazing how mom knows so much already...like, she knew what to do with the marker on the dry erase board (knew how to hold it correctly and what to do with it), she knows where she places things when she puts them down and she also knows where things are when she drops them on the bed. Unlike an infant, she does NOT put things in her mouth. Yet, in some ways, she is, indeed on an infant-like level. Well, mom and I played with the IPAD for an hour and 10 minutes...then she grew tired so I did her physical therapy as she listened to music on the IPAD using ear buds (all of my pictures and music are on her IPAD!!). We really didn't get to do an eighth of what the IPAD can do! I left and then Anthony and Con and Sammy came to see mom. They said she was awake again and very relaxed. They talked with her and did her physical therapy again before leaving hours later. Dad and Terry came next and did the same---more talking, physical therapy, watching TV... Dad came to my house and we went to Friendlys for dinner...then for a ride by the bay to check out the sunset and people fishing and crabbing and the sailboats on the bay...it was a gorgeous night. After dad left, I went back to see mom again. I tried some verbal cognitive therapy like, "Touch nose" or "Touch mouth" or "Do this" while making a face with my mouth. She only touched nose 3 xs. She was getting tired. At first, I didn't realize it, until a young nurse came into the room and asked if mom was "awake" to which I said yes and he replied, "I thought so! She grabs my hand when I talk to her now. This is a real miracle." He also asked how long she was in a coma. He said she is amazing. But, another older nurse came into the room to take mom's vitals...she was one of the nurses months ago who was sassy to me when I questioned the "Parkinson's med" that was given to mom. She was so rude at the time. Now she stood near mom and cooed to her and said she is with her every night...then she said, "And this is your daughter. She's here every day too---bothering you every minute like kids do and she pokes at you and moves you around and gives you no peace" --- she wasn't kidding around either. I made believe that she was though and laughed. It is so difficult sometimes to do that...to just make believe that I don't perceive the sarcasm and nastiness that exudes from so many there. Many are that way while others are caring but don't seem to know what to do for mom. I pray that God would give me His Heart for them. I also pray that I refocus on mom and not my missing her...it's all about her not me at this time. While I am ever thankful for mom's recovery, there are times like tonight, when I leave that place and just sit in my car and cry. Hmm...I didn't mean to end on such a sad-sack note! I am, indeed, thankful for mom and her recovery. She truly IS a miracle.
"Glory to God in the highest, and on earth peace to men on whom his favor rests." Luke 2:14
Mom Update, September 10, 2010, Friday
Hello to All!
I was the single-handed visitor during the day today---John and Claud away together (much deserved!), Anthony appointment, Dad with Anthony...so all who was left was me! I say that to say--- MOM SLEPT ALL DAY!!!! Exasperating! Here I thought I'd have her all to myself and that we could "play" all day---but no... she slept. When I first arrived mid morning, mom was asleep. I called to her, gently nudged her...then just did her physical therapy...at which time, she opened her eyes a crack, but then saw it was me and opened them widely and excitedly (in her facial expression) and smiled slightly with her mouth and much with her face and eyes...then, with the smile on her face, along with a look of contentment, she went to sleep. This continued throughout the day up until the end of my last visit at 4. Disappointing for me, to say the least. And of course, even though I know sleep is medicinal and necessary in healing, I always fear she is slipping backward at these times and not remaining where she is. Dad arrived as I left.
Lenny and I went on a Rosh Hashanna (I probably just slaughtered the spelling here! LOL) dinner cruise on the Great South Bay this evening. It was wonderful. After the cruise, we returned to see mom and tuck her in and kiss her good night---around 10:45 p.m. WELL...GUESS WHO WAS UP WATCHING TV??!!! From the data sheets and charts, Dad, Anthony and Con (all came in the late afternoon into the evening) reported that mom was wide awake when they came to visit. Thank God. While Anthony and Con were there, mom took her glasses off, rubbed her eye and put them back on!. She said, "What" out loud while they were there, she watched TV and they talked to her and did her physical therapy. When Lenny and I were there, she watched TV as well, but then we tried something JoAnn suggested; we gave her a small dry erase board and some markers and watched what she'd do (Ant and Con tried it too). She remembered how to hold a marker!!! She made marks on the board and then Lenny made an upper and lower case D and asked her to do it---she did try to and made something similar!! Then she just made marks on the board but not randomly, as though she was trying hard to write something. She didn't like the activity though because she began to look away from the board and at the TV when Lenny asked her to write and then she held the marker upside down in her hand and wouldn't write anymore. Too funny!! Lenny, however, the new ABA Behavior Therapist, went to the TV, shut it off, then told her, "Look at me" while touching his finger first to his nose then to hers. He then modeled writing on the board and said, "First write, then TV. Do you want to earn TV? Then write." It was too precious to watch!!! She made a mark on the board disgustedly then turned away from it all!! He applauded her and put the TV back on---her reward. We prayed with her and left the TV on (Lenny complained she would have nothing to do if we shut it---I want to teach her night from day). The struggles of 2 teachers (and strong personalities!!). Praise God.
"Show me your ways, O LORD; teach me your paths." Psalm 25:4
I was the single-handed visitor during the day today---John and Claud away together (much deserved!), Anthony appointment, Dad with Anthony...so all who was left was me! I say that to say--- MOM SLEPT ALL DAY!!!! Exasperating! Here I thought I'd have her all to myself and that we could "play" all day---but no... she slept. When I first arrived mid morning, mom was asleep. I called to her, gently nudged her...then just did her physical therapy...at which time, she opened her eyes a crack, but then saw it was me and opened them widely and excitedly (in her facial expression) and smiled slightly with her mouth and much with her face and eyes...then, with the smile on her face, along with a look of contentment, she went to sleep. This continued throughout the day up until the end of my last visit at 4. Disappointing for me, to say the least. And of course, even though I know sleep is medicinal and necessary in healing, I always fear she is slipping backward at these times and not remaining where she is. Dad arrived as I left.
Lenny and I went on a Rosh Hashanna (I probably just slaughtered the spelling here! LOL) dinner cruise on the Great South Bay this evening. It was wonderful. After the cruise, we returned to see mom and tuck her in and kiss her good night---around 10:45 p.m. WELL...GUESS WHO WAS UP WATCHING TV??!!! From the data sheets and charts, Dad, Anthony and Con (all came in the late afternoon into the evening) reported that mom was wide awake when they came to visit. Thank God. While Anthony and Con were there, mom took her glasses off, rubbed her eye and put them back on!. She said, "What" out loud while they were there, she watched TV and they talked to her and did her physical therapy. When Lenny and I were there, she watched TV as well, but then we tried something JoAnn suggested; we gave her a small dry erase board and some markers and watched what she'd do (Ant and Con tried it too). She remembered how to hold a marker!!! She made marks on the board and then Lenny made an upper and lower case D and asked her to do it---she did try to and made something similar!! Then she just made marks on the board but not randomly, as though she was trying hard to write something. She didn't like the activity though because she began to look away from the board and at the TV when Lenny asked her to write and then she held the marker upside down in her hand and wouldn't write anymore. Too funny!! Lenny, however, the new ABA Behavior Therapist, went to the TV, shut it off, then told her, "Look at me" while touching his finger first to his nose then to hers. He then modeled writing on the board and said, "First write, then TV. Do you want to earn TV? Then write." It was too precious to watch!!! She made a mark on the board disgustedly then turned away from it all!! He applauded her and put the TV back on---her reward. We prayed with her and left the TV on (Lenny complained she would have nothing to do if we shut it---I want to teach her night from day). The struggles of 2 teachers (and strong personalities!!). Praise God.
"Show me your ways, O LORD; teach me your paths." Psalm 25:4
Thursday, September 9, 2010
Mom Update, September 9, 2010, Thursday
The progress continues!!!
Claudia saw mom early this morning and did all her physical therapy, cognitive therapy (IPOD Touch and Tune Into Learning---music, themes, songs, body parts and function of objects). Mom LOVES this!! We are chipping in for an IPAD for her and purchasing it tomorrow. We can put the same IPOD Touch applications on the IPAD (which is much bigger and easier to see).
Anthony, Anthony Michael and Sammy saw mom next around midday. They did her physical therapy, cognitive therapy (Tune into Learning) and flashcards. They talked to her and told her all about their first days at school and said that she stuck her tongue out, picked at a tooth!, touched her tongue with her finger, scratched her stomach, and watched TV with them. Sammy said that, while she held mom's hand, mom released her hand and began to touch and stroke Sammy's face and hair while looking at her.
Dad and John saw mom late afternoon and early evening. They did her physical therapy and talked to her. John massaged her feet and also said that mom was very alert and did much tracking with her eyes.
Lenny and I had the night shift again today (I miss seeing mom awake!! I miss her so much). We tucked her in, fixed her pillows and arms and hands, kissed her and prayed over her. As we left tonight, her CNA (Certified Nurse's Aide) stopped to talk to us and she said she can't believe how well mom is doing. She said that it is truly amazing to watch our family and how much we do and know. She said we are making such gains and progress with mom. She also said that she loves mom so much and that she is so attached to her now and that mom makes her feel so good when she looks at this CNA after the CNA calls her or says, "Hi." The CNA said that, after mom goes home, she wants us to stay in touch with her and let her know how mom is. She said that mom touched her arm today when she was talking to mom and it made the CNA cry.
Thank you so much for all the prayers. Please pray for more guidance on what to do for mom next and that God would send the right people in our path to help us help her.
"The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail." Isaiah 58:11
Claudia saw mom early this morning and did all her physical therapy, cognitive therapy (IPOD Touch and Tune Into Learning---music, themes, songs, body parts and function of objects). Mom LOVES this!! We are chipping in for an IPAD for her and purchasing it tomorrow. We can put the same IPOD Touch applications on the IPAD (which is much bigger and easier to see).
Anthony, Anthony Michael and Sammy saw mom next around midday. They did her physical therapy, cognitive therapy (Tune into Learning) and flashcards. They talked to her and told her all about their first days at school and said that she stuck her tongue out, picked at a tooth!, touched her tongue with her finger, scratched her stomach, and watched TV with them. Sammy said that, while she held mom's hand, mom released her hand and began to touch and stroke Sammy's face and hair while looking at her.
Dad and John saw mom late afternoon and early evening. They did her physical therapy and talked to her. John massaged her feet and also said that mom was very alert and did much tracking with her eyes.
Lenny and I had the night shift again today (I miss seeing mom awake!! I miss her so much). We tucked her in, fixed her pillows and arms and hands, kissed her and prayed over her. As we left tonight, her CNA (Certified Nurse's Aide) stopped to talk to us and she said she can't believe how well mom is doing. She said that it is truly amazing to watch our family and how much we do and know. She said we are making such gains and progress with mom. She also said that she loves mom so much and that she is so attached to her now and that mom makes her feel so good when she looks at this CNA after the CNA calls her or says, "Hi." The CNA said that, after mom goes home, she wants us to stay in touch with her and let her know how mom is. She said that mom touched her arm today when she was talking to mom and it made the CNA cry.
Thank you so much for all the prayers. Please pray for more guidance on what to do for mom next and that God would send the right people in our path to help us help her.
"The LORD will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail." Isaiah 58:11
Wednesday, September 8, 2010
Mom Update, September 8, 2010, Wednesday
For any newcomers to the daily mailing list, you can catch up or look back by going to the blog I created:
http://dottysupdates-kgranelli.blogspot.com
Mom's progress remains steady! Another great day! It still amazes me that, once we were able to get her off the ZOCORE, HEPRIN, and the "standing 9 p.m. INSULIN shot" (she doesn't, and never did, have diabetes), her eyes open widely to the world every day. She is also alert as well since this time. To think that, if I hadn't been there the one night the new night nurse came in to give her the INSULIN shot (no one EVER told us she was getting this), mom may still be in a deeper level of a coma. But, praise God, this isn't the case.
Claudia saw mom early this morning and reported that mom was "bright eyed and bushy tailed" once again when she arrived. Claudia did her physical therapy and said that mom pushed against her with her left arm and hand (her weak, edemic side), and that she also lifted her left arm, moved her fingers on her left hand... and she gave resistance to the physical therapy. This is awesome progress! Dad saw mom next and said that one of the speech therapists came in to assess mom and commented on the great job we are doing with her and that we need to continue what we are doing. She also commented on mom's progress and provided us with more activities to do with mom. Dad said mom's eyes were open and she was alert the entire time he was with her. He did her physical therapy again and then sat and held her hand and talked and watched TV (food channel) like they do at home. Claudia then came back and did animal photos with her on the IPOD Touch (mom loves this activity!! She now grabs the IPOD and wants to hold it herself). Claudia played Ava's graduation CD and showed mom Ava's picture as she played it and said that mom took Avas picture from her and held it up and looked at it. She tried to have mom identify body parts---she identified some but not her nose (strange because that was the only part she consistently identified earlier on!). After dinner, Dad, Con, Anthony Michael and Sammy came to see mom. They said she was alert and awake and that she fixed her glasses better on her nose a few times (pushed them up higher). They also reported that she mouthed the word, "YES" in response to a question, audibly said the word, "WHAT" in response to being called, and shook her head up and down for yes as well. Ava came from school while Dad, Con and the kids were there and reported on her first day of college (she and Lenny loved it!!). Lenny will be swinging by later on tonight on his way home from his friend's house to tuck mom in and say prayers. My work schedule today was crazy so I didn't get to see mom. I miss her.
"Give thanks to the LORD, call on his name; make known among the nations what he has done." 1 Chronicles 16:8
http://dottysupdates-kgranelli.blogspot.com
Mom's progress remains steady! Another great day! It still amazes me that, once we were able to get her off the ZOCORE, HEPRIN, and the "standing 9 p.m. INSULIN shot" (she doesn't, and never did, have diabetes), her eyes open widely to the world every day. She is also alert as well since this time. To think that, if I hadn't been there the one night the new night nurse came in to give her the INSULIN shot (no one EVER told us she was getting this), mom may still be in a deeper level of a coma. But, praise God, this isn't the case.
Claudia saw mom early this morning and reported that mom was "bright eyed and bushy tailed" once again when she arrived. Claudia did her physical therapy and said that mom pushed against her with her left arm and hand (her weak, edemic side), and that she also lifted her left arm, moved her fingers on her left hand... and she gave resistance to the physical therapy. This is awesome progress! Dad saw mom next and said that one of the speech therapists came in to assess mom and commented on the great job we are doing with her and that we need to continue what we are doing. She also commented on mom's progress and provided us with more activities to do with mom. Dad said mom's eyes were open and she was alert the entire time he was with her. He did her physical therapy again and then sat and held her hand and talked and watched TV (food channel) like they do at home. Claudia then came back and did animal photos with her on the IPOD Touch (mom loves this activity!! She now grabs the IPOD and wants to hold it herself). Claudia played Ava's graduation CD and showed mom Ava's picture as she played it and said that mom took Avas picture from her and held it up and looked at it. She tried to have mom identify body parts---she identified some but not her nose (strange because that was the only part she consistently identified earlier on!). After dinner, Dad, Con, Anthony Michael and Sammy came to see mom. They said she was alert and awake and that she fixed her glasses better on her nose a few times (pushed them up higher). They also reported that she mouthed the word, "YES" in response to a question, audibly said the word, "WHAT" in response to being called, and shook her head up and down for yes as well. Ava came from school while Dad, Con and the kids were there and reported on her first day of college (she and Lenny loved it!!). Lenny will be swinging by later on tonight on his way home from his friend's house to tuck mom in and say prayers. My work schedule today was crazy so I didn't get to see mom. I miss her.
"Give thanks to the LORD, call on his name; make known among the nations what he has done." 1 Chronicles 16:8
Tuesday, September 7, 2010
Mom Update, September 7, 2010, Tuesday
Mom had yet another great day. Her eyes were open most of the day. I saw her early this morning and set her up for the day ahead---hearing aids, eyeglasses, washed face... Her eyes were open when I arrived. I did her physical therapy and she pretty much kept her eyes open the entire time I did so. She smiled and looked like she had a calm, comfortable, peaceful face as we exercised. The nurses came in and commented on how much mom is so alert and responsive now. One nurse said that mom said, "What" to her several times. The other nurse said that mom tracks with her eyes a lot now. She seemed to try to let me know that she needed her nose wiped by squeezing her eyes shut tight and touching her nose. When I arrived, she needed her nose wiped and it seemed that she knew she didn't have a tissue to do so because she kept pointing near her nose. One of the respiratory therapists told Claudia yesterday that we need to do facial movements and mouth movements---puckering, opening her mouth, sticking out her tongue... The nurse last night told me and dad that mom shocked her that morning because she looked right at her when she said good morning to mom. Dad and I did paperwork this morning...it is a daunting task to say the least. Anthony came to do mom's physical therapy around midday and said she was sleepy then. Dad and Aunt Carol came in the afternoon and found mom wide awake. They did her physical therapy and also showed her the family pictures and named everyone one at a time. Aunt Carol hadn't seen mom since last week and commented on how great she looked and acted. Claudia came late in the afternoon and did some cognitive therapy with mom using her IPOD Touch. She said that mom's favorite activity is the one where she looks at pictures of food. She also did the Sounds at Home and Outdoor Sounds CDs with mom. Mom wiped her eyes with her finger and her nose with a tissue. Mom grabs the IPOD Touch and wants to hold it herself now! While Claudia sat next to mom and held her hand, mom let her hand go and began to touch and explore Claudia's face. I visited mom this evening around 9 p.m. The night nurses lost one of mom's favorite piggys to hold---a long thin one--when they changed her. I tucked her in for the night and said our prayers, but I felt badly leaving her because her eyes were open. She had been sleeping peacefully when I arrived and awoke after the nurses changed her. It's hard to leave her when her eyes are open. Lenny and Ava start college tomorrow!! Anthony Michael started high school today!!
"...I have put my hope in Your Word" Psalm 119:74
"...I have put my hope in Your Word" Psalm 119:74
Monday, September 6, 2010
Mom Update, September 4, 2010, Saturday
Hi everyone,
I hope this works. I don't usually do the update. Kathy and my dad are upstate this weekend fixing the heater on the trailer. Mom had another great day. John and I saw her in the early morning and we set her up for the day. She opened her eyes spontaneously and kept them open for two hrs. We have been putting her glasses on her so that when her eyes are opened she can see the way she is use to. She had them open when we left and had them open when Anthony and Con went to see her at around noon. Ava, Anthony Michael and Samantha went later in the afternoon and she still had her eyes opened. The "Rehab Crew" as they like to be called sang their original songs for mom with Ava playing the guitar. Mom followed the command of touch your nose and touch your mouth, once each. She also tracked John and I in the morning. These have been the most alert days that mom has had so far. I just got an ipod touch and downloaded apps for speech therapists and special educators. THey are flash cards of items by catagory. They have a photo with the word and then the ipod says the item. It shows one item at a time and labels the item. I put the ipod about a foot away and scrolled through the vegetable catagory. Mom was very focused while looking at the pictures. John said she looked like she was thinking. She even put her fingers to her mouth as if she recognized that she was looking at food. John was very happy because he hasn't seen mom so alert. It gets upsetting when every time you see her and she is sleeping. He was so pleased. Anthony and Con did PT with mom and again tried to get her to follow commands. Mom wiped her eyes with the side of her finger. Con mentioned that mom actually pushed her glasses up when they were falling down. Con said it appeared as if she were crying. THere were two times that she had "tears in her eyes". I don't know if her eyes are tearing because they are opened more or if she is actually crying. I tend to think it is from being opened so much. Danny, Barbara and Bobby came today and brought mom flowers. Bobby talked about how he use to tease mom and the fun times they use to have. Terry came in the late afternoon and mom still had her eyes opened. By the time Terry left mom was getting sleepy. Con and Anth and the kids went back at 10pm to get her ready for bed. Mom was sleepy (which she should be at 10pm). We are trying to get her use to night as being dark in the room and no TV and day with the lights on and stimulation. Some of the nurses have told us in past weeks that she is up at night.
Sorry I don't have a bible verse. I will be better prepared tomorrow.
Peace to All and keep praying!!!
Where there is life, there is hope!
Claud
=
I hope this works. I don't usually do the update. Kathy and my dad are upstate this weekend fixing the heater on the trailer. Mom had another great day. John and I saw her in the early morning and we set her up for the day. She opened her eyes spontaneously and kept them open for two hrs. We have been putting her glasses on her so that when her eyes are opened she can see the way she is use to. She had them open when we left and had them open when Anthony and Con went to see her at around noon. Ava, Anthony Michael and Samantha went later in the afternoon and she still had her eyes opened. The "Rehab Crew" as they like to be called sang their original songs for mom with Ava playing the guitar. Mom followed the command of touch your nose and touch your mouth, once each. She also tracked John and I in the morning. These have been the most alert days that mom has had so far. I just got an ipod touch and downloaded apps for speech therapists and special educators. THey are flash cards of items by catagory. They have a photo with the word and then the ipod says the item. It shows one item at a time and labels the item. I put the ipod about a foot away and scrolled through the vegetable catagory. Mom was very focused while looking at the pictures. John said she looked like she was thinking. She even put her fingers to her mouth as if she recognized that she was looking at food. John was very happy because he hasn't seen mom so alert. It gets upsetting when every time you see her and she is sleeping. He was so pleased. Anthony and Con did PT with mom and again tried to get her to follow commands. Mom wiped her eyes with the side of her finger. Con mentioned that mom actually pushed her glasses up when they were falling down. Con said it appeared as if she were crying. THere were two times that she had "tears in her eyes". I don't know if her eyes are tearing because they are opened more or if she is actually crying. I tend to think it is from being opened so much. Danny, Barbara and Bobby came today and brought mom flowers. Bobby talked about how he use to tease mom and the fun times they use to have. Terry came in the late afternoon and mom still had her eyes opened. By the time Terry left mom was getting sleepy. Con and Anth and the kids went back at 10pm to get her ready for bed. Mom was sleepy (which she should be at 10pm). We are trying to get her use to night as being dark in the room and no TV and day with the lights on and stimulation. Some of the nurses have told us in past weeks that she is up at night.
Sorry I don't have a bible verse. I will be better prepared tomorrow.
Peace to All and keep praying!!!
Where there is life, there is hope!
Claud
=
Mom Update, September 5, 2010, Sunday
Hi Everyone,
I am going to try to send the update through Kathy's email so here goes. Anthony, Con, Terry and the kids visited mom early in the morning. She had her eyes opened and it was hard to leave so they stayed a long time. It is getting harder to leave when she is so "wide eyed". They did her physical therapy. Later in the day Mom's friend Maureen visited and wrote in the book that it was great to see her eyes opened. Donna came next to do therapy but by this time mom was sleepy. She opened her eyes but for very short times. By the time I got there she was sleepy. She also opened her eyes for very short intervals. She did not respond to commands yesterday although she did purposeful movements with her hand. She has been rubbing her right eye and we are keeping "an eye" (no pun intended) on it to see why she is rubbing it. She touched her glasses to push them on her face better. She also has been "exploring" her face with her hand touching her nose and wiping her mouth. Donna did report that when mom opened her eyes and saw Donna doing physical therapy, Donna told her what she was doing and a tear trickled down mom's cheek. I brought one of mom's favorite old movies with me and I watched it with her. She had her eyes closed tight as if on purpose but seemed to be listening. She startled a few times when I touched her hand or leg while sitting next to her as if I woke her up. I guess the sensory system is beginning to make sense of gaging intensity of touch. It is as if we are watching a child more through the development process, exploring her face, tracking with her eyes, etc. I tucked mom in for the night and as I was leaving she opened her eyes wide. I couldn't leave her so I I "snuggled" by her and spoke softly until she fell asleep.
Keep praying and Peace to all,
Where there is life there is hope!
Claudia
I am going to try to send the update through Kathy's email so here goes. Anthony, Con, Terry and the kids visited mom early in the morning. She had her eyes opened and it was hard to leave so they stayed a long time. It is getting harder to leave when she is so "wide eyed". They did her physical therapy. Later in the day Mom's friend Maureen visited and wrote in the book that it was great to see her eyes opened. Donna came next to do therapy but by this time mom was sleepy. She opened her eyes but for very short times. By the time I got there she was sleepy. She also opened her eyes for very short intervals. She did not respond to commands yesterday although she did purposeful movements with her hand. She has been rubbing her right eye and we are keeping "an eye" (no pun intended) on it to see why she is rubbing it. She touched her glasses to push them on her face better. She also has been "exploring" her face with her hand touching her nose and wiping her mouth. Donna did report that when mom opened her eyes and saw Donna doing physical therapy, Donna told her what she was doing and a tear trickled down mom's cheek. I brought one of mom's favorite old movies with me and I watched it with her. She had her eyes closed tight as if on purpose but seemed to be listening. She startled a few times when I touched her hand or leg while sitting next to her as if I woke her up. I guess the sensory system is beginning to make sense of gaging intensity of touch. It is as if we are watching a child more through the development process, exploring her face, tracking with her eyes, etc. I tucked mom in for the night and as I was leaving she opened her eyes wide. I couldn't leave her so I I "snuggled" by her and spoke softly until she fell asleep.
Keep praying and Peace to all,
Where there is life there is hope!
Claudia
Mom Update, September 6, 2010, Monday
Mom had yet another wide-eyed, alert day today!! Claudia saw her early in the day. She washed mom's face, put her hearing aids in and also put her glasses on. She did her physical therapy, cognitive therapy and said that mom touched her mouth 3 times on command, did photo identification on her IPOD touch (actions and shapes). Claudia uses the IPOD touch using the orange earphones in the drawer attaching them to the IPOD. She also reviewed all the 8x10 pictures of all of us...showing them to her and naming each person. As Claudia did her physical therapy, she put the food network on and realized that mom was watching the show!! Anthony, Con, Anthony Michael, and Ava came to see mom next. Her eyes were open the entire time they were there!! While they visited with mom, they did her physical therapy as well. They also noted that mom was wiping her right eye alot and that the eye sometimes teared as well. They decided to tell the nurse about it. They said that mom kept rubbing her forehead too. While she rubbed her eye, she did so using her index finger so they gave her a tissue to use. Mom used the tissue well; and once, when she dropped the tissue, she looked on the bed for it and found it and put it back in her hand to use again!! Anthony also asked her, at one point, if she was done using the tissue and mom placed it in his hand!! Claudia took all her handheld piggys home to wash Saturday night and mom missed holding them---she began to substitute the vent line that attaches to the trach (she also loves holding this tube line). After mom rubbed her eye with the tissue once, she looked at the tissue to see if anything was on it. Once, mom reached out and began to touch and feel Con's face. As she did so, they labeled each facial feature "This is Con's nose. This is her mouth..." It was as though she was exploring Con's face. Anthony and Con did mom's physical therapy and cognitive therapy too. At another point, mom rubbed at her ear, and Anthony looked at that ear and saw that her hearing aid fell out; so he put it back in. Yesterday and today, mom opened her mouth and stuck out her tongue really far (she's hasn't done that in months). When they asked her questions, she said, "What" audibly, out loud twice. She tracked with her eyes for Claudia and Anthony and Con and the kids. Jean came to see mom late in the afternoon and brought her handheld piggys back---she liked that. He did cognitive therapy with her---imitating faces---he made a face and then asked her to make the same face---mom tried to do this!! Dad and Lenny and I saw mom next. We came straight to mom from upstate. (Upstate was fun...dad seemed to enjoy being there and with us as well. It was relaxing for us all--despite some septic mishaps before leaving---Dotty, your prayers worked!! After we saw you, the problem fixed itself!!). Dad and I both said that we felt like we hadn't seen mom or been in the rehab center in weeks instead of days. Mom looked soooooo much better since even Friday!! Her eyes were wide open and she tracked us with her eyes. She took dad's hand and rubbed it on her nose and mouth and chin. Dad told her who he was and also pointed to his picture on the back of her door---she tracked his hand the whole way. By 6:00 or 6:15ish, mom took dad's hand in hers and went to sleep. She had a really great and productive day. Dad and I tucked her in at 7:15 and rearranged her pillows, took out her hearing aids and took off her glasses...kissed her good night and left.
"Give thanks to the Lord, call on His name, make known among the nations what He has done. Sing to Him, sing praise to Him, tell of all His wonderful acts. Glory in His holy name, let the hearts of those who seek the Lord rejoice. Look to the Lord and His strength, seek His face always. Remember the wonders He has done, His miracles..." Psalm 105:1-5
To God be the glory...amen.
"Give thanks to the Lord, call on His name, make known among the nations what He has done. Sing to Him, sing praise to Him, tell of all His wonderful acts. Glory in His holy name, let the hearts of those who seek the Lord rejoice. Look to the Lord and His strength, seek His face always. Remember the wonders He has done, His miracles..." Psalm 105:1-5
To God be the glory...amen.
Friday, September 3, 2010
Mom Update, September 3, 2010, Friday
MOM HAD AN AWESOME DAY!!! PLT!!!!
Her day began at 7:30 a.m. when Claudia arrived to do her physical therapy and get her ready for her day (put her hearing aids in, wash her face, comb her hair...). When Claudia arrived, she said mom's eyes were already WIDE open and she was looking around the room!! Claudia was so excited she began to talk to her and to show her everyone's pictures on the back of her door (weeks ago, I printed 8x10 color photographs of each family member and made labels of our name and role in the family and taped them to the back of the door to her room so that she would have something informational to look at when her eyes opened). Claudia did other types of cognitive therapy (asking her questions, giving commands, labeling objects and pictures...). MOM HAD HER EYES OPEN 1 and 1/2 HOURS STRAIGHT while Claudia was there!!! Claudia ran outside and called all of us and we gathered the kids together and ran over. Mom had her eyes open 98% of the time in a normal, wide-eyed fashion from 7:30 a.m. through 3:30 p.m.!!!!!!!!!!!!!!!!!!!!!!!!!!!! YIPPPEEEE!!!!
She didn't speak during this time, but she observed so much of her environment and herself. It reminded me of a child who is a few months old---exploring the environment (mainly visually). She wiped her mouth very skillfully with her hand many times. She rubbed her eye with her knuckle a few times. She scratched her nose with her finger. She looked at the TV. She tracked people and activities visually the whole time. She made eye contact several times. As she held onto the rolled towel we use to prevent atrophy in her hands, she picked the towel up and held it to her face and studied it. She had a great deal of dexterity and strength in her left hand (the weak, edema side---big difference once we found out how to position her arms in bed). She used a pincer grasp. Lenny began to do "discrete trials" with her (he learned this at work this summer while working with kids with autism...you present an item or picture and label it verbally, then ask, "Touch ___."). When Lenny showed mom 2 pictures, he then asked, "Touch Anthony" (holding pictures of Anthony and Con---2 separate ones). Though mom was seldom correct on touching the right person, she understood the command to touch the picture and did so many times!!!! At one point, her right hearing aid fell out and she pointed to it close to her ear---we didn't realize she was telling us that her hearing aid fell out at first, but then we understood and complied. We took out the guitar and Claudia played and we sang. We did a new variation of SOUNDS AT HOME and SOUNDS OUTDOORS CDs---we played the sounds and showed her pictures and labeled each one at a time. She didn't use facial expressions and didn't move her mouth to speak but once. SHE IS OFF THE HEPRIN, INSULIN shot at night, and ZOCORE!!! Alleluia!!! Dare I say that maybe mom is finally coming back to us???.....
Pray...pray...and pray some more. Thanks. xxxooo
"Be prepared. You're up against far more than you can handle on your own. Take all the help you can get, every weapon God has issued, so that when it's all over but the shouting you'll still be on your feet." Ephesians 6:13
Her day began at 7:30 a.m. when Claudia arrived to do her physical therapy and get her ready for her day (put her hearing aids in, wash her face, comb her hair...). When Claudia arrived, she said mom's eyes were already WIDE open and she was looking around the room!! Claudia was so excited she began to talk to her and to show her everyone's pictures on the back of her door (weeks ago, I printed 8x10 color photographs of each family member and made labels of our name and role in the family and taped them to the back of the door to her room so that she would have something informational to look at when her eyes opened). Claudia did other types of cognitive therapy (asking her questions, giving commands, labeling objects and pictures...). MOM HAD HER EYES OPEN 1 and 1/2 HOURS STRAIGHT while Claudia was there!!! Claudia ran outside and called all of us and we gathered the kids together and ran over. Mom had her eyes open 98% of the time in a normal, wide-eyed fashion from 7:30 a.m. through 3:30 p.m.!!!!!!!!!!!!!!!!!!!!!!!!!!!! YIPPPEEEE!!!!
She didn't speak during this time, but she observed so much of her environment and herself. It reminded me of a child who is a few months old---exploring the environment (mainly visually). She wiped her mouth very skillfully with her hand many times. She rubbed her eye with her knuckle a few times. She scratched her nose with her finger. She looked at the TV. She tracked people and activities visually the whole time. She made eye contact several times. As she held onto the rolled towel we use to prevent atrophy in her hands, she picked the towel up and held it to her face and studied it. She had a great deal of dexterity and strength in her left hand (the weak, edema side---big difference once we found out how to position her arms in bed). She used a pincer grasp. Lenny began to do "discrete trials" with her (he learned this at work this summer while working with kids with autism...you present an item or picture and label it verbally, then ask, "Touch ___."). When Lenny showed mom 2 pictures, he then asked, "Touch Anthony" (holding pictures of Anthony and Con---2 separate ones). Though mom was seldom correct on touching the right person, she understood the command to touch the picture and did so many times!!!! At one point, her right hearing aid fell out and she pointed to it close to her ear---we didn't realize she was telling us that her hearing aid fell out at first, but then we understood and complied. We took out the guitar and Claudia played and we sang. We did a new variation of SOUNDS AT HOME and SOUNDS OUTDOORS CDs---we played the sounds and showed her pictures and labeled each one at a time. She didn't use facial expressions and didn't move her mouth to speak but once. SHE IS OFF THE HEPRIN, INSULIN shot at night, and ZOCORE!!! Alleluia!!! Dare I say that maybe mom is finally coming back to us???.....
Pray...pray...and pray some more. Thanks. xxxooo
"Be prepared. You're up against far more than you can handle on your own. Take all the help you can get, every weapon God has issued, so that when it's all over but the shouting you'll still be on your feet." Ephesians 6:13
Thursday, September 2, 2010
Mom Update, September 1, 2010, Wednesday
Three months ago, mom had the aneurysm burst. But...mom had a great day today!!! Her eyes were open for most of the day! Dad and Anthony said that, in addition to her eyes being open, she even moved her left arm quite a bit and said, "What?" audibly when they called her. After they left, the recreation therapist stopped in to see mom and she left us a note in mom's "Love Notes for Dotty" book saying that, as she talked to mom about how mom must have thought that the drumming circle at the recreation room 2 weeks ago must have been terrible compared to mom's choir at church, mom replied, "YUP!" I arrived later in the afternoon and mom had her eyes open a lot (the longest time was 3 minutes). She would open her eyes widely and look at me and/or all around the room or track me with her eyes. She also looked at objects I held in front of her face/eyes and tracked them too. She would close her eyes for up to 35 seconds and then open them for a longer period of time again. Dad and Aunt Carol visited later and mom opened her eyes a lot then too (they left around 8:00 p.m. or so. We didn't see any doctors to find out if she is off any additional medications yet or not but will find out sometime this week. Claudia returns to work tomorrow---which is a loss of much help with mom (she took over my early morning visits to mom this last month or so). I begin work next week. Dad agreed to come upstate with Lenny and I this weekend. I hope he is able to relax a bit up there (us too!). I am feeling overwhelmed this week. Mom's roommate from a few weeks ago is back (the large woman who seemed mentally ill). The woman was very quiet all day and night so far....pray for her but also that she doesn't bother mom in any negative way.
"The LORD is my strength and my song; he has become my salvation. He is my God, and I will praise him,
my father's God, and I will exalt him." Exodus 15:2
"The LORD is my strength and my song; he has become my salvation. He is my God, and I will praise him,
my father's God, and I will exalt him." Exodus 15:2
Mom Update, September 2, 2010, Thursday
When Claudia visited mom early this morning to do her physical therapy, she said that mom was pretty alert (eyes open). The respiratory therapist talked to Claudia about mom's vent because Claudia realized that there was an air leak in it (not critical but needs to be fixed). The therapist didn't think Claudia knew what she was talking about but, as we all know, he doesn't know the Claudia we all know!!! She knows her stuff!! (and much of everyone else's too!!). So, much to his surprise (not ours), she was right; there was a leak!! He told her to let a therapist know if it happened again and he also showed her what the therapist's need to do to fix it. Anthony came in the late morning and did mom's physical therapy and talked to her (he's so good at that! Sometimes I find it hard to talk to someone who doesn't always respond). [Also...mom's hearing aids were nowhere to be found this morning!!]. Dad came in the early afternoon and visited with mom. Mom had her eyes open on and off but not as much as yesterday. I saw mom in the later afternoon and did her physical therapy. The vent was leaking air again but the therapist on duty didn't think it was a problem. The pieces of the vent tubing were eventually changed and all the leaking sound was gone. Con, Anthony Michael, Sammy, and Dad visited mom tonight and Sammy said she was mostly sleepy (opened eyes 3 times). No news on the medication yet...as to which ones she is still on and which she is off. If anyone knows any respiratory therapists, I would love to talk to one in order to find out exactly how the weaning process works as well as how to read the charts and machine so we can keep track of the progress ourselves as well.
"He breathed the breath of life into the man’s nostrils, and the man became a living person." Genesis 2:7
"He breathed the breath of life into the man’s nostrils, and the man became a living person." Genesis 2:7
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