You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
Thank you, Nancy and family for the rosary bracelet. I just love it. I did let Rose wear it while I was having my acupuncture yesterday. Shirley loves it, too. She has been a godsend since I have not been myself and Rose and I couldn't get along without her. She is from Louisiana and was impressed tat a "little man from Louisiana" made the rosary. If you will send us his address, we will order one for Shirley. She took me to the hospital last Monday, stayed and got me settled, made sure I had everythig I needed, and picked me up on Tuesday. She and Rose make sure I eat 3
squares a day.
Den was here over the weedend. We stayed home a couple days. He went back to Chicago today but will be back next weekend.
We finally sold the house in Springfield and have a backup offer should the deal fall through. Quite a relief.
I'm a bit shaky today but probably from the steroids. Can't see any difference yet, but I know I'm impatient. I'm sure all the prayers I,m having said for me are working.
Sunday, February 29, 2004
Friday, February 27, 2004
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
If anyone who reads this weblog would like a message posted to it, please send an e-mail to Sue at the link on the right, and we will post it for you.
Sue finished her intravenous treatments on Thursday at 6:00 am. All went pretty well. She had wonderful home health care nurses, one of whom came when the port was plugged and showed us what to do. Now Sue has 'graduated' from intravenous steroids to steroids by mouth. She will take tapering-off amounts of prednizone for a week or so and will see her neurologist again on March 10. The steroids have left her somewhat shakey and unsteady on her feet, but in good spirits and highly motivated to do all that the physical therapists suggest.
We keep learning about motor neuron disease (MND) as time goes by. Sue has no definitive diagnosis for her condition. She has been told by two neurologists that some 25 to 40% of neuropathies are never diagnosed. It turns out she has been evaluated by a super-duper team at Barnes-Jewish--some of the best in the U.S. That team's conclusion: no clear diagnosis. Shirley's sister, Loretta, told us yesterday that her neurologist in New Orleans recommended a renowned neurologist at Barnes-Jewish Hospital/Washington University whose name is Alan Pestronk. Sue was all set to talk to her neurologist today about consulting Pestronk only to find out that he is head of the very team that evaluated Sue when she was in Barnes-Jewish Hospital last month.
Whatever the disease is, it is extremely vexing and difficult for Sue. As we all know, Sue is someone who has always done for others and who rarely could just sit. Well, this condition is curing her of all that. She is having to STOP doing for others and even begin accepting the gift of others doing for her. And she is learning to sit quietly and not DO, DO, DO. Difficult for her and a real trial by fire.
Denny drove in from Chicago today, and he and Sue are back at their house for the weekend. Their daughter-in-law Tiffany, and granddaughter, Haleigh, brought dinner this evening. Son Aaron is fishing at the Lake of the Ozarks this weekend. Sue's daughters-in-law have been wonderfully loving and attentive. Seems the sons did indeed 'marry their mother', so to speak.
Shirley, Sue, and I are excited because Sue's grandson Brayden, son of Scott, will come spend several days with us in early March. Margaret and Sue will meet Scott in Mt. Carmel, IL, to pick up Brayden then come here on Monday, March 8. Shirley and I will be in Chicago on our bi-weekly work jaunt. Shirley will return on Monday, and I will return on tuesday. Having Brayden with us turns us into dottery old ladies. He is a love. We claim that he first walked when he was with us three weeks ago, just before his first birthday on February 12. Of course, now he no longer walks; he runs! It takes several old dottery ladies to keep up with him.
If anyone who reads this weblog would like a message posted to it, please send an e-mail to Sue at the link on the right, and we will post it for you.
Sue finished her intravenous treatments on Thursday at 6:00 am. All went pretty well. She had wonderful home health care nurses, one of whom came when the port was plugged and showed us what to do. Now Sue has 'graduated' from intravenous steroids to steroids by mouth. She will take tapering-off amounts of prednizone for a week or so and will see her neurologist again on March 10. The steroids have left her somewhat shakey and unsteady on her feet, but in good spirits and highly motivated to do all that the physical therapists suggest.
We keep learning about motor neuron disease (MND) as time goes by. Sue has no definitive diagnosis for her condition. She has been told by two neurologists that some 25 to 40% of neuropathies are never diagnosed. It turns out she has been evaluated by a super-duper team at Barnes-Jewish--some of the best in the U.S. That team's conclusion: no clear diagnosis. Shirley's sister, Loretta, told us yesterday that her neurologist in New Orleans recommended a renowned neurologist at Barnes-Jewish Hospital/Washington University whose name is Alan Pestronk. Sue was all set to talk to her neurologist today about consulting Pestronk only to find out that he is head of the very team that evaluated Sue when she was in Barnes-Jewish Hospital last month.
Whatever the disease is, it is extremely vexing and difficult for Sue. As we all know, Sue is someone who has always done for others and who rarely could just sit. Well, this condition is curing her of all that. She is having to STOP doing for others and even begin accepting the gift of others doing for her. And she is learning to sit quietly and not DO, DO, DO. Difficult for her and a real trial by fire.
Denny drove in from Chicago today, and he and Sue are back at their house for the weekend. Their daughter-in-law Tiffany, and granddaughter, Haleigh, brought dinner this evening. Son Aaron is fishing at the Lake of the Ozarks this weekend. Sue's daughters-in-law have been wonderfully loving and attentive. Seems the sons did indeed 'marry their mother', so to speak.
Shirley, Sue, and I are excited because Sue's grandson Brayden, son of Scott, will come spend several days with us in early March. Margaret and Sue will meet Scott in Mt. Carmel, IL, to pick up Brayden then come here on Monday, March 8. Shirley and I will be in Chicago on our bi-weekly work jaunt. Shirley will return on Monday, and I will return on tuesday. Having Brayden with us turns us into dottery old ladies. He is a love. We claim that he first walked when he was with us three weeks ago, just before his first birthday on February 12. Of course, now he no longer walks; he runs! It takes several old dottery ladies to keep up with him.
Wednesday, February 25, 2004
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
Well, Brother Joe called tonight to check on Sue, AKA Pepe la Peau. I talked to him and he said he was liking this blog except for one thing. He didn't think he remembered everything, something we had posted earlier. I had to tell him that the only thing he didn't remember is that he does remember everything. All our siblings and his own children have said that he does. This conversation was in regard to the 'smart pills' joke previously posted. Joe did remember the joke, of course.
Sue has three more intravenous steroid treatments. We await some results. It may take a while.
Well, Brother Joe called tonight to check on Sue, AKA Pepe la Peau. I talked to him and he said he was liking this blog except for one thing. He didn't think he remembered everything, something we had posted earlier. I had to tell him that the only thing he didn't remember is that he does remember everything. All our siblings and his own children have said that he does. This conversation was in regard to the 'smart pills' joke previously posted. Joe did remember the joke, of course.
Sue has three more intravenous steroid treatments. We await some results. It may take a while.
You can reach Sue at (314) 452-3685 or (314) 726-2032. You can write to her c/o Rose Holt, 905 Barnard College Lane, St. Louis, MO 63130
The nurse just got the kink out of the tube and everything worked fine. The nurse said Rose was developing a "Ben Casey" complex from washing her hands and avoiding germs. She (Rose) took it seriously and threatened to"cut out my tongue".
So far, I haven't seen any reaction from the steroids, but it's only been a bit over 48 hours. We keep praying, A friend of Rose's brought Communion and Ashes for Ash Wednesday tonight.
Pete, we had a blank email from you today. Joe is sure you hocked your laptop.
The nurse just got the kink out of the tube and everything worked fine. The nurse said Rose was developing a "Ben Casey" complex from washing her hands and avoiding germs. She (Rose) took it seriously and threatened to"cut out my tongue".
So far, I haven't seen any reaction from the steroids, but it's only been a bit over 48 hours. We keep praying, A friend of Rose's brought Communion and Ashes for Ash Wednesday tonight.
Pete, we had a blank email from you today. Joe is sure you hocked your laptop.
Tuesday, February 24, 2004
Sue is home now, at our home. She had the initial intravenous steroids during her 30 hours or so in Barnes-Jewish and has come home with an IV port in her arm through which she will receive further meds. The home health care nurse will be here shortly to teach us how to administer the meds and care for the port. So far so good. Too soon to tell if there is improvement or even if this approach will help. Sue resumes her physical therapy on Thursday and is doing her daily exercises faithfully.
Sue says thanks to all the visitors and callers during her brief hospital stay.
She will see Dr. Frank again in two weeks, and start again with accupuncture on Saturday. Dr. Ginger, the accupuncturist and oriental doctor, has given her some 'smart pills,' and they are working. Brother Joe especially knows about smart pills. It was originally his old, old joke, and he never forgets anything. This is the joke: A man goes to the doctor because he feels stupid. The doctor prescribes some smart pills for him which he takes faithfully. He goes back to see the doctor after a couple weeks. The doctor asks how he is doing. "I am better, but those pills look just like rabbit droppings." The doctor responds, "See, you're getting smarter already."
As you can see, Sue is keeping her wit well sharpened.
If you want to send her a car or note, send it to 905 Barnard College Lane, St. Louis, 63130, c/o Rose Holt. Also, the phone number here is (314) 726-2032, and Sue's cell phone is (314) 452-3685. Cards, calls, prayers, well wishes solicited.
Sue says thanks to all the visitors and callers during her brief hospital stay.
She will see Dr. Frank again in two weeks, and start again with accupuncture on Saturday. Dr. Ginger, the accupuncturist and oriental doctor, has given her some 'smart pills,' and they are working. Brother Joe especially knows about smart pills. It was originally his old, old joke, and he never forgets anything. This is the joke: A man goes to the doctor because he feels stupid. The doctor prescribes some smart pills for him which he takes faithfully. He goes back to see the doctor after a couple weeks. The doctor asks how he is doing. "I am better, but those pills look just like rabbit droppings." The doctor responds, "See, you're getting smarter already."
As you can see, Sue is keeping her wit well sharpened.
If you want to send her a car or note, send it to 905 Barnard College Lane, St. Louis, 63130, c/o Rose Holt. Also, the phone number here is (314) 726-2032, and Sue's cell phone is (314) 452-3685. Cards, calls, prayers, well wishes solicited.
Monday, February 23, 2004
Sue is in Barnes-Jewish West, Room 1460A, phone number (314) 996-8260. She went in this morning, had some preliminary tests, and is now getting the steroid treatments intravenously. Dr. Frank is keeping her just 24 hours or so for this first series of steroids. He will release her some time tomorrow, and she will have further treatments with home health care services. She says she feels fine and is having no reactions to the medications so far.
Kim and children came in to see her this morning, and Chris was there this afternoon. I (Rose) am in Chicago for my regular every other week work trip and will return to St. Louis tomorrow.
We'll post more when we know more. Keep praying, please.
Kim and children came in to see her this morning, and Chris was there this afternoon. I (Rose) am in Chicago for my regular every other week work trip and will return to St. Louis tomorrow.
We'll post more when we know more. Keep praying, please.
Sunday, February 22, 2004
Because so many people want news about Sue, she and I are starting this weblog so that family and friends can know what is going on with a click of the mouse. We will try to update this site frequently.
Sue will go to Barnes-Jewish West Hospital tomorrow morning for some intravenous steroid treatment for her condition. Her neurologist is treating a possible inflammation that is causing all the symptoms--footdrop, paralysis of right hand, partial loss of use of her left hand, and some lack of balance. She expects to be in the hospital only 24 hours or so and will have follow-up treatment at home with home health care.
Lots of people are praying, and many have sent cards, letters, and e-mails of encouragement. Today we went to 10:00 am Mass at Christ the King Church near here with Chris (Sue's son) and his wife Shelly. Chris and Shelly then brought lunch to our house, and we had a delightful time at the meal.
The treatment tomorrow will be the first initiated by Sue's neurologist, Bennett Frank (Yes, in that order). Last week, Tuesday, Dr. Frank did a lumbar puncture (spinal tap), Sue's third during the past month, and the tests on her spinal fluid showed results that prompted him to try this new treatment.
For about four weeks now Sue has been having accupuncture treatments from an oriental doctor, Dr. Ginger, and has been taking herbs that Dr. Ginger recommends. And last week Sue began physical therapy at St. Mary's Rehab Center with a wonderful young P.T. named Shelley.
Sue hasn't been able to work at all since January 22nd, and has only worked sporadically since early December. She is applying for Social Security Disability which we are praying will be temporary, but will, of course, help in the interim. About three weeks ago she got a "DISABLED" placard for the car, and that saves her some grief getting in and out of places.
She sleeps better with the help of Ambien and has shown improvement over the past couple of weeks. Perhaps it is the accupuncture. Perhaps it is the improved rest. Perhaps it is due to all the prayers, well wishes, annointings, and love.
Sue has been staying with Shirley and me since December, except when Denny is able to be in town. In some ways it is like our annual trip to Florida only longer. We have a wonderful time together, and we do eat well! For now our seventh annual winter vacation to Florida is on the backburner.
Oh, one more thing. Last weekend, Scott and his two sons, Brayden and Jalen, came for a five-day visit. Brayden turned one year old on February 12. On Sunday, Sabrina and her family hosted a birthday party and prayer service at their house. We had a wonderful time, all 22 of us. Children, especially grandchildren, are like medicine.
Sue will go to Barnes-Jewish West Hospital tomorrow morning for some intravenous steroid treatment for her condition. Her neurologist is treating a possible inflammation that is causing all the symptoms--footdrop, paralysis of right hand, partial loss of use of her left hand, and some lack of balance. She expects to be in the hospital only 24 hours or so and will have follow-up treatment at home with home health care.
Lots of people are praying, and many have sent cards, letters, and e-mails of encouragement. Today we went to 10:00 am Mass at Christ the King Church near here with Chris (Sue's son) and his wife Shelly. Chris and Shelly then brought lunch to our house, and we had a delightful time at the meal.
The treatment tomorrow will be the first initiated by Sue's neurologist, Bennett Frank (Yes, in that order). Last week, Tuesday, Dr. Frank did a lumbar puncture (spinal tap), Sue's third during the past month, and the tests on her spinal fluid showed results that prompted him to try this new treatment.
For about four weeks now Sue has been having accupuncture treatments from an oriental doctor, Dr. Ginger, and has been taking herbs that Dr. Ginger recommends. And last week Sue began physical therapy at St. Mary's Rehab Center with a wonderful young P.T. named Shelley.
Sue hasn't been able to work at all since January 22nd, and has only worked sporadically since early December. She is applying for Social Security Disability which we are praying will be temporary, but will, of course, help in the interim. About three weeks ago she got a "DISABLED" placard for the car, and that saves her some grief getting in and out of places.
She sleeps better with the help of Ambien and has shown improvement over the past couple of weeks. Perhaps it is the accupuncture. Perhaps it is the improved rest. Perhaps it is due to all the prayers, well wishes, annointings, and love.
Sue has been staying with Shirley and me since December, except when Denny is able to be in town. In some ways it is like our annual trip to Florida only longer. We have a wonderful time together, and we do eat well! For now our seventh annual winter vacation to Florida is on the backburner.
Oh, one more thing. Last weekend, Scott and his two sons, Brayden and Jalen, came for a five-day visit. Brayden turned one year old on February 12. On Sunday, Sabrina and her family hosted a birthday party and prayer service at their house. We had a wonderful time, all 22 of us. Children, especially grandchildren, are like medicine.
Subscribe to:
Posts (Atom)