Sunday, October 31, 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


We haven't had a minute to update this blog because we have had Brayden since October 22. He is a full time job. Three person, full time job. What a delightful child! He entertained us royally and was good as gold. Probably in the eight days we had him, he cried a total of five minutes. Now he talks, mimics everything you say, likes to keep all three adoring old women in the same room (which required a lot of shepherding on his part), and he has a million different expressions.

But enough about our love. Rose and I met Scott and Jalen yesterday in Mt. Vernon, Il, to return Brayden. Today we are missing him, Big Time. We've had such grand entertainment--the baby, the World Series (such as it was), this intense election. After Tuesday, we just don't know how we will spend our time.

On Tuesday I had an appointment with my former neurologist, Dr. Frank, for a consult. We brought records from my St. Francis hospital stay. He was grand in our time with him. He gave me a thorough exam, reiterated his opinion that I DO NOT HAVE ALS, that my symptoms are atypical for the disease. He doesn't know what I do have, but thinks further treatment is in order. He tentatively said he would go ahead with the IV IG (immuno globulin) that he recommended last spring and stop the Solumedrol because it did not do as much for my neuropathy as he had hoped. However, he said he would look over all the records and call me in a few days. He did give us three names from my insurance company list of covered neurologists that he feels would be suitable for me to see.

Interestingly enought, [providential even(?)], Mary Myers saw her physician on Friday and told him of my dilemma. He gave her the name of a neurologist he highly recommends and, it turns out, it is one of Dr. Frank's three. I think that will be my new neurologist!

Right now we are in Chicago, having come here yesterday after leaving Brayden with Scott and Jalen. Shirley was already here; she flew in on Wednesday. Today I go over to Downers Grove for my acupuncture treatment. Den will meet us there, and I will go with him until tomorrow afternoon.

Just in case I have forgotten to mention important things or people, remember I still have a touch of amnesia. Shirley says she is going to take advantage of my condition and just wrap up old stuff to give at Christmas. Now that I am alerted to this, I intend to check tags on everything I get!

More when we have time.


Friday, October 22, 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

All went as planned since Tuesday. I am on the road to recovery from this infection or reaction to Contact--whichever it was. I still have some amnesia. Jack from the office called and told me it was Sunday, and he was just home from church. I told him that I could hide my own Easter eggs!

Tuesday evening we played cards, and Wednesday we watched the Cardinals kick ass.
Loretta and I both had appointments with Master Wang on Wednesday. He gave me acupuncture to help my amnesia and the usual treatment for my neuropathy. Loretta is going to find an M.D./acupuncturist in New Orleans. She felt good after her treatment.

On Wednesday we forgot to check in with Dr. Costas as we were supposed to. Around 6:00 pm, he called to find out why not. One small complication for me is that I have now developed a mild case of shingles (if there be such a thing as a mild case). We called Costas as we were driving to St. Louis, and he called in medications that were waiting for me at Walgreen's. The man is surely a Medicine Man!

This morning Rose and I drove over into Illinois where we met Scott, his friend Sherry, and Brayden. We had lunch then brought Brayden home with us. He has been a pure delight. No missing his daddy today. He has played, laughed, talked, eaten, hugged, kissed, and entertained us royally. Tonight he had acorn squash with his dinner, which he insisted on eating with his fingers. Right now he is asleep on the floor of the living room, having worn himself and the three of us completely out.

Our plan for tomorrow is to celebrate Rose's birthday with crab cakes for dinner followed by winning Cardinals baseball. Scott chided Rose and Shirley today for being such fickle Cubs' fans. His belief is that you don't switch allegiance just because your team is losing. He may be worried about the 'ex-Cub Factor,' which says that the Cubs are so tainted with losing that having old Cubs' fans could go against the Cardinals.

We get to keep Brayden a full week. We have lots planned.

Tuesday, October 19, 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


Sue was released from St. Francis around 6:00 pm last evening, and happy to be out of there. Dr. Costas sent her home with antibiotics, her blood pressure med, and Ambien for sleep. He has asked that we call in every day to give him a report and that we stay close by until Thursday. Our plan to take Loretta to Midway Thursday morning and to drive on to St. Louis from there.

We had a great Ya-Ya dinner last night and then watched our beloved Cardinals lose. We were glad to see the Red Sox pull from behind to defeat those damn Yankees.

Sally Felin called this morning just to check in and wish us the best.

We are doing laundry, hanging out, plan to play cards, and a friend of Shirley's is dropping by.

That's all from Windy What-Nots for now.

Monday, October 18, 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


It's Monday Morning. Sue will be released from the hospital later on today. Dr. Costas came in last night for a long check-in. He says that if Sue has West Nile, the recovery will take a while. If she has had a reaction to the cold medicine, her recovery will be faster. She is off all her medications for now except for her blood pressure stuff and her sleeping potion. Her memory continues to improve, but still has chunks of recent events missing.

This morning Sue's legs are sore because she walked so much yesterday.

Many people are calling to check in, yesterday Brian Madden, Margaret, Bernie, Pete and Janet, Scott and Chris.

Our plan is to stay here in Chicago until Thursday, then drive home. Dr. Costas thinks it is a good idea to stick close by for a few days until these symptoms have abated for sure.

An endocrinologist just came in and said Sue would be going home after Drs. Costas and O'Brien and a second endocrinolgist have been in. One of the reassuring things about this hospital is that all the staff communicate with each other and with Sue. Dr. Costas, with whom we've all fallen in love, is never rushed and oversees every detail of Sue's treatment and cure. You might think Sue is his only patient. Before this past week, Shirley thought she was his only patient.

We've been following closely the baseball playoffs. Den is in the pits over the Cards' loss yesterday. The Red Sox have pulled it out of the fire, it would seem. Today should be interesting.










Sunday, October 17, 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


Here is the latest update from St. Francis:

Sue is continuing to improve. The heart monitor is gone. Today she is showered already, dressed for Mass at noon, and has walked for some exercise.

Dr. Costas was in yesterday afternoon. He is still puzzled over this episode and thinks it is a reaction to the cold medicine. His advice: Don't take anymore of that stuff. Sue's response: YES SIR! Her Friday EEG was almost normal, and her Saturday MRI looked fine. She still has a deep infection in her sinuses and will go home with antibiotics for another two weeks. Dr. Costas has stopped the anti-viral infusions as he thinks it is not needed. One really bright note is that neither Costas nor O'Brien, the neurologist, thinks Sue has ALS.

Today we have yet to see anyone except the resident on duty. Costas and O'Brien will be in later, and we will update again after that.

Stephanie sent us an interesting e-mail today:


"A Rose and A Sue,

I was talking to Jacob this morning on the way to another band trip and he asked how A Sue was doing. I told him that she was doing better and he said, "Boy, she sure is a fighter." I couldn't agree more! We are all amazed at her fighting spirit. Tell her that we love her and are praying for her everyday. Tell her that I sure hope that her problem remembering includes that story about my cake baking. I'm sure all will return soon, but tell to relegate that story to the dead file. Love to all.

Stef"

Stef, at the moment Aunt Sue doesn't remember ONE cake baking story. She told me that when you were little, you loved to whip up something in the kitchen, pop in the oven, then go out to play. The thing (cake) would just keep on cooking until it was burned. I remember that when Aunt Sue was little, she skipped the whip up and pop in, and went directly to the play. It was your mother who always completed the whole task.

Shirley and her sister, Loretta, arrived yesterday. I picked them up at Midway, and we came here in the afternoon. Later on this morning the four of us will go to Mass in the beautiful chapel here in the hospital.

Scott called last night. We are planning to meet him midway between St. Louis and Louisville to pick up Brayden on Friday. Scott has some managers who are on vacation so he is having to work extra and needs help with childcare. We are only too, too happy to help. We are just sorry that Jalen can't come because of school.

Donald called. He and Vita are going to New York to celebrate their 35th (YES! THIRTY-FIFTH) anniversary. They will be in St. Louis next weekend and will try to get together with us.

This has surely been an ordeal for Sue. However, her sense of humor may be even keener in all of the trauma. Last night we were walking in the hallway. There was brochure posted about reducing your risk factors for heart disease. Sue said, "Yeah, no salt, no fat, no alcohol, no smoking, no good times. You just THINK you're living a long time."

Dr. Costas has her on a low-sodium, low-cholesterol, low-fat, utterly tasteless diet here. She said it reminded her of the old man in Marshfield who was asked about his diet. He said, "If it tastes good, I spit it out because I know I'm not supposed to have it."

I brought coffee and biscuits and gravy from the cafeteria this morning. Sue said it was the best food she's had since she came in here. Of course, she thought she should have spitted it out. Even the resident said it looked delicious.

Sue notes how much the Marshfield Mail terminology is just 'in us.' It gave us 'some better, turn for the better/worse, took sick, keep those cards and letters coming, ' and a lot of others we can't recall right now.


Friday, October 15, 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


We've had time now to research some material Stephanie sent us about encephalitis. Thanks, Stef! It seems that the West Nile Virus can cause encephalitis, which is one bear of a disease. Dr. Costas said this afternoon that all the spinal fluid looked fine and, so far, no bad bugs have been cultured in it that would point to encephalitis.

Suzanne sent us information about the connection between encephalitis and shingles. We talked about that with Dr. Costas who said Sue's shingles occurred too long ago for there to be a relation to this illness.

Mary Myers called this evening, having heard Sue is ill. Sue told her about the memory problem she is having. Mary's response: Have you forgotten all those embarrassing things you did in your 20's? Sue said that unfortunately those parts of her memory are intact.

Also, Sue's physical therapist in St. Louis at St. Mary's called when Sue didn't show for her appointment. She was worried about Sue. She and Sue's other therapist are praying for a full and fast recovery and want to be kept updated.

A note to Catrina: Thanks for this Blue Cross insurance! So far, so good. No problems with precertification; it was handled between someone here at St. Francis and a person in the Blue Cross Blue Shield office. God only knows what this stay in the hospital will add up to.

We had a wonderful time at Randy's 40th birthday party last Friday. When we get back to St. Louis, we will be able to download photos and post them on this blog.
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


Dr. Costas was just here. He is still saying the same thing: West Nile Virus and/or complications from the meds plus recent cold medicine. The short term memory problem will disappear in either case. He will let Sue leave the hospital late on Monday if all the tests turn out as he expects rather than keep her the full seven to ten days he was threatening yesterday.

Costas is a great guy. He told us places to get some great carry-out food, which we plan to do for dinner. He also shared his view of eating organic food (He's in favor of it with certain caveats.), and he had some suggestions for treating Sue's psoriasis. Sue liked his suggestions because it wasn't 'try these 42 prescription creams and come back and see me in six weeks,' the usual spiel she's heard from the numerous dermatologists she's seen.

The neurologist, Dr. O'Brien, is also a great guy and very funny. Yesterday, during his examination, he asked Sue "to spell 'the word, 'World' backwards but, please, drop the 'W'." She was only too happy to do so.

This morning Sue had her EEG, but those results aren't in yet. And she is still awaiting her trip to the MRI tube. The employees of this hospital are great and numerous. However, Sue says they are NO help with her mental confusion because she never sees the same one twice.

Den and I have been around, off and on, all day. The days in the hospital can be awfully long and boring. I remember years ago Sue going on a trip with Bob in his Eighteen Wheeler. She said it was like being in the hospital--nothing to look forward to but the next meal. Now she says the food was better at truck stops.

Pete and Janet called this morning. The big 'do', their granddaughter Caitlin's cotillion, is tomorrow night. They were looking forward to the event. Pete said that after he was here last time, he found out that he is not yet 'house broke.' So he has a new rule: All women have to leave the toilet seat UP.

Chris called to check in. Sabrina and Margaret called. And Jack, from the office, called. Shirley has checked in with us periodically, and her friend Barbara called to see how Sue is.

I've had numerous voice mails and am relying on general communications since you're not allowed to use cell phones in this place.

Sabrina and Sue talked about her temporary amnesia, and Sabrina quizzed her about certain happy events until she was reassured. Sue told her how good Den has been, "like a rock," which reminded Sabrina of a song, "I Don't Remember Loving You," and she added 'sounds like you're falling in love all over again.'

Margaret, of course, is purely delighted with the Cardinals--as is Denny. Margaret was also so very helpful in reminding us that she too had confusion with her recent terrible infection and was fine in a short few days.

I have talked with Scott daily. We always love news about Jalen and Brayden. He said Jalen is going to have his last name changed to "Spreitler," which makes us all really happy. Jalen just completed a perfect month of all 'green frogs' at school so he earned the promised new computer game. I asked Scott if Brayden is communicating more. Scott chuckled and said that the other day Brayden came up to him, got his attention, then pointed to his butt. He had 'dropped a load,' as Scott put it. That's communicating.

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 Hello, from St. Francis Hospital once again. It is around 8:30 am, and I'm happy to report Sue is some better this morning. Today she is to have another EEG and an MRI. We haven't seen any physicians yet and will report again after they come in.

Thursday, October 14, 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


The infectious diseases specialist, Dr. Costas, was in. His diagnosis: West Nile Virus. His gut feel: Some kind of strange interaction of the medications, Solumedrol, Toprol, Ambien, and the Contact she has been taking in recent days for a bad cold. His puzzlement is that immediately after he started IV infusion to treat a viral infection, Sue started getting better, so he wants to see it through the full seven to ten days treatment course for insurance.

All this means, it is looking like, that she will be here for at least another week. We had planned a week’s vacation in Chicago with Sue, Shirley, Shirley’s New Orleans sister, and myself starting Saturday. Now we are thinking we will just go ahead with our plan and simply include the wrinkle that Sue will be here in the hospital. I guess we can play Bouree’ (spelling?) here just as well as at the apartment.

Here is St. Francis Hospital in Evanston, Illinois. Sue has a phone in her room, the number: (847) 316-4125.

One interesting and perhaps helpful development in all this is that the neurologist who is consulting is familiar with the physicians in the Neuromuscular Clinic at Barnes Jewish Hospital in St. Louis and with the physicians at the Scottsdale Mayo Clinic. Sue is getting now a really thorough THIRD opinion from another very good specialist for her ongoing problem.
Sue says THANKS, Kim and Family, for the beautiful fresh flowers that arrived this afternoon.
Chris just called for an update, and we’ve been communicating with Scott and Margaret to keep the rest of the family updated. Please pass along this weblog address to anyone else you think might want this info.

For those of you who missed Sabrina’s comment to the last post, here it is:

"Thanks for the update. We have all been so worried about her. The only treatment for a brain cloud is to "live like you were dying", in other words, enjoy life, and Aunt Sue has always done that well. FYI- For those of you who aren't familiar with the term, the reference is from "Joe Versus the Volcano". Please let her know we are praying for her."
# posted by Sabrina : 1:16 PM


I can’t think of a more appropriate thing to say. Thanks, Girl. Definitely not a 'brain cloud.'


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


News from Chicago: The bad news is that Sue has been very, very sick. The good news is that today she is much, much better. Tuesday morning, in Greenwood parlance, she 'tuck sick' early in the morning, thought she 'laked to die.' Around 6:00 am she had a terrible headache and nausea. Advil helped the headache, but she was obviously seriously ill. Shirley and I called her primary care physician in St. Louis who said we should take her to an emergency room. We went immediately to St. Francis Hospital in Evanston which is just north of our Chicago apartment where the doctor there began antibiotics after a CAT Scan showed a sinus infection in the deep sinus cavities.

At first the attending physician thought she could go home that afternoon, but Dr. Chris Costas, the infectious diseases specialist (and friend of Shirley's) thought she was too ill and admitted her to the hospital. He called in a neurologist, and the two of them have been managing her care. Their tentative diagnosis is encephalitis. They are treating her with tons of antibiotics. Yesterday morning she was particularly bad, incoherent, confused, and not communicating at all for about 10 minutes. An EEG showed irregular brain patterns so an MRI is scheduled for this afternoon. The neurologist just stopped in and was happy to see her doing so well. He has now ordered a follow-up EEG.

Sue's condition was bad all day yesterday. Den and I took turns sitting with her because she wanted 'get out of here' every two minutes or so and would try to leave. Shirley had to go back to St. Louis on Tuesday while we still thought Sue would be released that afternoon. Den came Wednesday, and he and I have been hovering since. Last night Barbara, another friend of Shirley's, arranged for someone to sit by the bedside overnight just in case Sue decided, once again, that 'it's time to get out of here.' However, after an hour's nap in the evening, she began to settle down and then was able to sleep well through the night. This morning she was almost herself again. I'm happy to report her sense of humor is totally intact.

Right now we are awaiting Dr. Costas' visit and will report more when we know more.

[Special note to Sabrina: Sabrina, My own diagnosis is that she has had a 'brain cloud.']


Thursday, October 07, 2004


Pete and Janet's son-in-law Tom and daughter Merri Posted by Hello

Caitlin with parents Rick and Nancy Posted by Hello

Caitlin, Pete and Janet's granddaughter, ready for her Homecoming Dance Posted by Hello

Tuesday, October 05, 2004


Sue and Den Posted by Hello

Pete Posted by Hello

Joe and Norman Posted by Hello

Great (!) Niece Jana and Fiance' John Posted by Hello

Mark Posted by Hello

Brayden and Scott Posted by Hello

Norman Posted by Hello

Margaret Posted by Hello

Sue Posted by Hello

Brayden and Scott Posted by Hello

Janet Posted by Hello

Shirley Posted by Hello

Joe and Pete at Work Posted by Hello

Joe at Work Posted by Hello

Sue, Scott, and Brayden Posted by Hello

Pete and Janet Arrive Posted by Hello

Sue Posted by Hello

Alex Posted by Hello

Evelyn (Den's Mother) Posted by Hello

Kim and Alex Posted by Hello

Kim and Alex Posted by Hello
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


After a hiatus of several days, here we are, updating as promised. The photos from our Evelyn-Kim-Alex visit last Wednesday are now 'blogged.'

When last we posted, we were plotting on how to stick Pete with the dinner check that evening. It turned out to be easy. We had a fine meal at Pio's with the Abbott's then rushed home to watch the first presidential debate. We simply made sure to seat Pete where the server would get to him first and last.

Friday evening we discovered the meal at Pio's was actually second-rate because we went to Margaret's for dinner. She put on the the dog, for sure--fried chicken with a lot of sides.

In between our dinner dates, Scott and Brayden arrived. Brayden didn't take to us at first, much preferring his Daddy. After Scott left for the Lake on Friday morning, it took Brayden about 20 minutes to stop wailing because his Dad left him. Then he turned into a model, beautiful child, sunny and happy. He is learning new words. His favorite expression, which he used over and over, is "Hi, Pete!" Shirley printed off photos of Jalen which Brayden carried around with him, pointing to it and saying, "Bubba." We think Bubba must mean Brother. Now we know how Bill Clinton got his nickname.

Saturday was a get-ready-for-Sunday day. We shopped, played with the baby, visited with Pete and Janet, and anticipated our big family get-together.

We talked with Bernie on Sunday. He and Maudie had been camping with their Camp Club and have other big plans. All seems well with them.

Joe arrived late Sunday morning, and others came in the afternoon. The photos here are from Sunday and Monday. About half of the photos Rose took did not turn out so not everyone was captured. Chris and Shelly arrived late after playing in a golf tournament. Den came in Monday morning from the Lake and left for Chicago this morning.

Joe stayed over for his Railway Club Meeting on Monday evening. Joe had written in an e-mail that when he works now, he does so for nothing and even supplies the materials. Knowing that, we put him to work. We went to Home Depot, bought a new toilet seat for the downstairs bathroom and some mums for the front porch. Coming home, Joe said he was anxious to get that toilet seat behind us. And he did.

Pete and Janet left Monday morning to get to Great Bend by evening to visit with our Kansas relatives, sister-in-law Sally and Cousins Mary Pauline and Ralph. They wanted to be home by Wednesday morning and had miles to go before they slept.

A very happy Brayden left with his father Monday morning. They got back to Louisville right on time, and Scott said Brayden was a model traveller and was awake most of the trip.

And now it's back to normal for us--whatever that means. We are missing Brayden Big Time and are resting. Shirley leaves for Chicago tomorrow. Rose and I will drive there on Saturday. The World Series Playoff games start today so we'll watch. Rose, who has had two extensions now for her 2003 Federal Tax Returns, is on a deadline. I may have to chain her to the desk to make sure she gets them done.

We'll update later in the week--post taxes, play-offs, debates, airport ferrying, and rest.