Quick update. Mom is still in the hospital but was moved to a step-down room (6213 -- her lucky number is 13!) yesterday. She can have visitors 24 hours a day. So now for the nuts and bolts---dare I say she seems better each day? I do dare. I do proclaim, in fact, that she is better each day. Where that will lead, only God knows, but she is better each day. Small increments. Baby or neonatal steps even...but better.
Her speech is still slurred and when she wants to say anything that she is initiating---not part of the context of a current conversation with her---the words are 98% gibberish, not real words. It's funny though because even someone's gibberish between loved ones still has meaning. She still uses the same tones and volume of voice to say affectionate things or to yell at us in frustration even. She and I had a most difficult morning today...she is frustrated and misses dad terribly...she once told me that one of the things she loved most about dad (from before they were married) was that he made her feel so secure. She cries terribly and inconsolably when he is not with her in the hospital (though he spends 9-10 hours there a day).
She ate all her breakfast for me---all of it!!! She sucked thickened (nectar thick) orange juice and milk through a straw (to a count of 5), she ate oatmeal and pudding from a spoon and she chewed and swallowed that tofu looking french toast stuff too! She cried on and off for dad but when breakfast ended, she really became ornery. Calling me names and telling me to, "Shut up!" That phrase comes out loud and clear!! No matter what I did, she was gritting her teeth in anger --- I remember in special education classrooms I'd worked in that the kids act out the most with the person the know can take it and still love them anyway. I guess I am that person to her. Lucky me! The good thing and amazing thing is this: about an hour after she calmed down, she called my name and said, "I'm sorry." Then we told each other we loved each other. The amazing part to this is that she knew what she did and she knew she wanted to apologize...she was so aware. Her memory wasn't this good before.
Mom tries to sing and to count with us when we do her range of motion exercises too. Today she counted in order at one point and out of order at another point. She mentioned numbers in the 90s and 100 (not in order). She tries to sing with me when I sing songs I used to sing with my pre-K kids about the days of the week or the months in a year.
Anthony came and did physical therapy with her while I was there and he makes me cry to watch how skilled he has become in working with mom. He puts many of the physical therapists I've seen work with mom to shame. He got her to move her right foot quite a few times and her fingers on her right hand once. He works the muscles in her shoulder near her neck and almost does a pressure point stimulation down her arm to wake up her muscles again...and it works every time. He does something similar down her leg too. And of course, he gets her laughing so much!!
Dad was able to get mom to imitate sticking out her tongue which is monumental too! Many times! Dad also was able to get her to smile, putting her lips and mouth the same way his was, but not able to show her teeth, though she tried to.
Con and Sammy and Anthony Michael and Gina and Terry and Jean and Claudia all came all day on various days of the week or at night to be with mom. Mom spoke on the phone to Con and Claudia and Aunt Carol today. Actually maintained a conversation---granted, not big sentences, but she managed to say, 'hello' and 'OK' and 'so long' and other phrases in context. Mom also enjoyed a visit from Uncle Mike, her brother too this week.
Claudia, ever the innovator, is already working on ideas on how to help mom communicate. Since neither of her 2 hands work well enough to write, Claudia came up with the idea to teach mom to use a lighted pointer flashlight (it sends a red beam of light) to point to cards or words or phrases in order to communicate. She is also making a social story for mom to use about missing dad.
Though I have made numerous calls to the neurologist at the hospital, he hasn't called me back yet. His receptionist wanted to know what exactly I wanted or could want to talk to him about??? She was surprised I asked to speak to him. Oh brother, some things never change. And one person comes in and says one thing and 2 seconds later someone else comes in and says the exact opposite. It is what it is. Advocacy, advocacy, advocacy.
We are up to finding a facility for mom to go to for rehab. Or, we may opt to take her home for rehab. We aren't sure yet. Please pray for guidance. Thanks so much.
A year ago today, it was a Friday and December 2...but it was this Friday, this day that we took mom back home after being in a facility for 18 months. One of Claudia's students came to the colloquium she and I did on mom's story at the college the other night. After he left, he wrote her this text message. It puts everything in perspective for me... here it is:
"I just finished filling in my wife about tonights lecture/teaching & showing ur web site. Family is our world. I can't describe how much ur story touched us. Ur family is just inspirational for the dedication, sacrifice, & distance u'v gone for ur mother. Honestly, I will NEVER forget tonights lesson. It is easy to see the passion ur sister & u have for teaching as well as helping & caring. My wife is very much the same, but working 10 yrs. at the Flower I didn't c other teachers like that & I think it's sad. They try to make the kid adapt to their way of teaching instead of trying to adapt to the kid/s. I was so sorry to hear about ur mom at the end, she will be in my families prayers. No matter what happens though, because of ur families love & commitment, she lived happier than ever for 2+ more yrs despite what the professionals gave her. In doing so ur story is going to safe countless others, children & elders, that I know."
"Love one another" John 13:34
Her speech is still slurred and when she wants to say anything that she is initiating---not part of the context of a current conversation with her---the words are 98% gibberish, not real words. It's funny though because even someone's gibberish between loved ones still has meaning. She still uses the same tones and volume of voice to say affectionate things or to yell at us in frustration even. She and I had a most difficult morning today...she is frustrated and misses dad terribly...she once told me that one of the things she loved most about dad (from before they were married) was that he made her feel so secure. She cries terribly and inconsolably when he is not with her in the hospital (though he spends 9-10 hours there a day).
She ate all her breakfast for me---all of it!!! She sucked thickened (nectar thick) orange juice and milk through a straw (to a count of 5), she ate oatmeal and pudding from a spoon and she chewed and swallowed that tofu looking french toast stuff too! She cried on and off for dad but when breakfast ended, she really became ornery. Calling me names and telling me to, "Shut up!" That phrase comes out loud and clear!! No matter what I did, she was gritting her teeth in anger --- I remember in special education classrooms I'd worked in that the kids act out the most with the person the know can take it and still love them anyway. I guess I am that person to her. Lucky me! The good thing and amazing thing is this: about an hour after she calmed down, she called my name and said, "I'm sorry." Then we told each other we loved each other. The amazing part to this is that she knew what she did and she knew she wanted to apologize...she was so aware. Her memory wasn't this good before.
Mom tries to sing and to count with us when we do her range of motion exercises too. Today she counted in order at one point and out of order at another point. She mentioned numbers in the 90s and 100 (not in order). She tries to sing with me when I sing songs I used to sing with my pre-K kids about the days of the week or the months in a year.
Anthony came and did physical therapy with her while I was there and he makes me cry to watch how skilled he has become in working with mom. He puts many of the physical therapists I've seen work with mom to shame. He got her to move her right foot quite a few times and her fingers on her right hand once. He works the muscles in her shoulder near her neck and almost does a pressure point stimulation down her arm to wake up her muscles again...and it works every time. He does something similar down her leg too. And of course, he gets her laughing so much!!
Dad was able to get mom to imitate sticking out her tongue which is monumental too! Many times! Dad also was able to get her to smile, putting her lips and mouth the same way his was, but not able to show her teeth, though she tried to.
Con and Sammy and Anthony Michael and Gina and Terry and Jean and Claudia all came all day on various days of the week or at night to be with mom. Mom spoke on the phone to Con and Claudia and Aunt Carol today. Actually maintained a conversation---granted, not big sentences, but she managed to say, 'hello' and 'OK' and 'so long' and other phrases in context. Mom also enjoyed a visit from Uncle Mike, her brother too this week.
Claudia, ever the innovator, is already working on ideas on how to help mom communicate. Since neither of her 2 hands work well enough to write, Claudia came up with the idea to teach mom to use a lighted pointer flashlight (it sends a red beam of light) to point to cards or words or phrases in order to communicate. She is also making a social story for mom to use about missing dad.
Though I have made numerous calls to the neurologist at the hospital, he hasn't called me back yet. His receptionist wanted to know what exactly I wanted or could want to talk to him about??? She was surprised I asked to speak to him. Oh brother, some things never change. And one person comes in and says one thing and 2 seconds later someone else comes in and says the exact opposite. It is what it is. Advocacy, advocacy, advocacy.
We are up to finding a facility for mom to go to for rehab. Or, we may opt to take her home for rehab. We aren't sure yet. Please pray for guidance. Thanks so much.
A year ago today, it was a Friday and December 2...but it was this Friday, this day that we took mom back home after being in a facility for 18 months. One of Claudia's students came to the colloquium she and I did on mom's story at the college the other night. After he left, he wrote her this text message. It puts everything in perspective for me... here it is:
"I just finished filling in my wife about tonights lecture/teaching & showing ur web site. Family is our world. I can't describe how much ur story touched us. Ur family is just inspirational for the dedication, sacrifice, & distance u'v gone for ur mother. Honestly, I will NEVER forget tonights lesson. It is easy to see the passion ur sister & u have for teaching as well as helping & caring. My wife is very much the same, but working 10 yrs. at the Flower I didn't c other teachers like that & I think it's sad. They try to make the kid adapt to their way of teaching instead of trying to adapt to the kid/s. I was so sorry to hear about ur mom at the end, she will be in my families prayers. No matter what happens though, because of ur families love & commitment, she lived happier than ever for 2+ more yrs despite what the professionals gave her. In doing so ur story is going to safe countless others, children & elders, that I know."
"Love one another" John 13:34
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