Thursday, August 31, 2006

August, 2006

RAND’S PROGRESS



August 1, 2006
Day 184

Rand was quiet today. He had several visitors, including his wonderful barber who gave him a haircut. He seemed tired and rather disconnected. Thankfully, he was not in any pain. Maybe all the successes of the last few days wore him out. He was not interested in going for a walk or being outside, which is unusual. He had several minor coughing/choking spells while eating some goodies which also harks back to the bad old days. I hope this was a day of respite and that tomorrow he will bounce back into his bright-eyed and bushy-tailed new routine.

My aunt arrives from Fargo tomorrow night and we're all ready for her. She was here a year ago last February during a cold, rainy time. It will be nice to show her around in the warm sunshine, go to the beach, etc.

I have spell checked and printed out the first six months of these epistles. They neatly fill one binder. Tonight begins binder #2.

Keep Rand close to your hearts, in your thoughts and prayers.

Love,
Connie


August 2 and 3, 2006
Days 185 and 186

This will be a brief overview of yesterday and today as I have company - my aunt flew in from Fargo last night and, boy, are her arms tired! GROAN.

Rand had a good morning, a horrible afternoon and evening yesterday. The pain was awful as his right leg spasmed again and again. Two narcotic painkillers later, he finally had some relief. He also started having a reaction to coumadin again. His legs and feet started breaking out in a rash and his right leg/foot swelled up. Last night I took a black felt pen and circled all the rash areas on his legs and took pictures of them. Then I used a tape measure to wrap around his leg, ankle and foot to show the size so we would have something to compare it with today and in subsequent days, then I photographed them. I emailed the photos to the doctors and printed out a set for the caregivers so they know what to look for and then I hoped I wouldn't have to put Rand through the ordeal of a trip to the hospital. So far it has worked! The rash and swelling have not increased in the last 24 hours and the doctors are pleased with what they see via email. WHEEEEE! There is another blood draw tomorrow morning and if his blood is therapeutic, then maybe the abdominal shots can stop! Double WHEEEEE!

My aunt Phyl brought us sweet corn from Minnesota (double YUM!) and a package of lefse. Rand happily ate lefse this morning and we'll bring corn and more lefse over tomorrow. This afternoon Rand was tired as he had his first day of PT in almost a month and it was painful. The session lasted 90 min., plus he had more company. Tomorrow is the Great Bed Exchange, OT in the a.m., Speech therapy for the first time in the p.m., a blood draw and more company. Whew. Phyl and I went to the beach for lunch this afternoon after making another run to the hospital pharmacy to refill Rand's painkiller prescription.

My epistles will be sporadic for the next few days with all the activities going on. Be aware that the team of Frick and Frack are once again swinging into action tomorrow to attach the new headboard to the new bed frame. Uff da. I'll take pictures!

Keep Rand close. He's had and will have some tiring days. This too shall pass. He is his sweet, handsome self, in spite of it all.

Love,
Connie

August 4 and 5
Days 187 and 188

Rand has been in such pain for the last 24 hours. His right leg spasms constantly. His calf is warm, knotted, and painful to the touch. He has been getting the narcotic pain killer and some morphine to keep it under control. We spent most of today in the emergency room as he is once again reacting to the blood thinning drugs, coumadin and probably lovenax. I'm not quite sure what all I was told today, but the doctor thinks this might be internal bleeding that is causing his foot to swell so much rather than an allergic reaction. For now he is off coumadin again and his lovenax shots have been stopped for 24 hours. We will see the doctor early next week to see what is going on . . . and to hear about Plan B. This roller coaster has got to stop pretty soon. When I came home from Rand's Room late last night I told my aunt that at this rate, Rand is going to outlive me by many years! I know how he suffers, how much pain he has, how frustrated he is, but, you know what? Me too. I know I shouldn't complain, but I'm getting tired and frustrated too. I need a break also. What's going to happen when I go back to work? Should I resign and forget the whole thing now and stay home? Then what would happen? A person can "go postal." Can a person "go medical?"

Rand's sister Karen sent us the cutest T-shirts that she designed! They have a CR logo in the center circle and around it is printed: "C and R Trucking Co. We Keep On Trucking!" After we got out of ER tonight, we called them and Rand said, "I am the trucker!" And a darned good one, said Karen! Very cute and very special. Pictures to follow!

Rand's wonderful new bed arrived yesterday and he is enjoying it as much as he can through the pain. When he is feeling better, he will thoroughly enjoy it. I tried one of the massage features on his upper body last night, trying to draw his attention away from the pain. It worked briefly. A friend came over and attached the headboard and it looks great. Pictures to follow when life settles down. Thanks again, Kiki.

Keep Rand close to your hearts, in your thoughts and prayers. He has had a rough two days. Peaceful, quiet, pain free days must lie ahead.

Love,
Connie





August 6, 2006
Day 189

Sorry, in all the confusion yesterday, my day numbering is fouled up again. Yesterday's email covered days 187 and 188, not 186 again as I stated.

Today, Rand had a grand day! He was bright-eyed, bushy-tailed, had no pain, was great, great, great! My Aunt Phyl took him through some "back to the basics" from his Lutheran upbringing and she was thrilled that he could recite the Lord's Prayer with her, could say "Jesu Naven" and the table grace we grew up with. He hardly missed a beat on any of them. Tomorrow she is going to sing the Concordia fight song with him, "Beautiful Savior" and review today's recitations! Funny thing is, Phyl is only one of three members of the family who did not go to Concordia - the other 29 of us did!! Oh, well, she is from a good Concordia family and that counts. Rand and I also sang "Moon River" together several times - great fun!

The swelling in Rand's foot was down today and the color was almost normal. I just love it when Rand is smiling, happy, pain-free, funny, enjoying life. Phyl, our neighbor Jackie, and I took him for a walk and he talked a blue streak. He was so happy to be outside, to be surrounded by friends and family, to have new "drivers" for his wheelchair, to be enjoying everything around him. What a delight this day was for all of us! We left him on the verge of a nap and we went on an opplevelse that included a tour of the back roads, a winery and lunch. We had a good time, too. Tonight we went back to Rand's Room so I could give him his shot plus a little shot of red wine. That brought a resounding, "WOW!!" Maybe I should do that more often! He totally enjoyed it.

Thank you for keeping Rand close to your hearts, in your thoughts and prayers. It is days like this that make me so thankful for everyone of you. Days like yesterday are so sad, scary, tough, miserable and unpredictable that I forget how many people are on our side. When the Randbow shines, my brain clears, my soul rejoices and my heart sings and I thank you for standing with us as we wade through another quagmire.

Love,
Connie

August 7, 2006
Day 190

This was another good day for Randbo. He was tired from his PT session this morning, but otherwise was in good spirits. Did I tell you that I have hired a CNA to work with Rand five days a week? He is experienced and the PT and OT are impressed with him. He is there for the weekly OT and PT sessions with Rand, takes his guidance from the therapists and carries out those plans every day. What a relief that is! At least I know that Rand will not be falling though the therapy cracks again as before.

Rand's new bed is a godsend! There is nothing like sleeping in your own bed and this is the closest Rand can get right now. We have a Select Comfort bed at home so this Select Comfort is almost like home. Rand has the sleep number set to the same setting on the new bed. This one not only is adjustable but also has several massage features. One of these days, we'll have the time to really get acquainted with it. The new sheets, mattress pad and two special "back sleeper" pillows will arrive any day now, so he'll be in hog heaven!

Tomorrow we have an appointment with his doc. to see what can and should be done about the coumadin issue. I hope the lovenax shots can be stopped soon. Rand's poor tummy is so black and blue and yellow from all the injections.

My aunt Phyl leaves early in the morning for Fargo. We'll be up at 4:30 a.m. so she can catch her 6:30 a.m. flight. Uff da. But the Minnesota sweet corn she brought was wonderful, the lefse was outstanding and having her here was such a treat. I'll miss her.

Keep Rand close to your hearts. Keep good thoughts about the doctor's decisions tomorrow. I'll let you know what happens.

Love,
Connie

August 8, 2006
Day 191

The rollercoaster continues and at times I want to jump off! Today we spent almost 5 hours at the medical center completing and following up on a 20-minute doctor's appointment. What does it take for people (professionals??) to get their act together? To find their fannies with both hands? For the right hand to know what the left hand is doing? How many med techs does it take to plug in a stethoscope?? Good grief! Just when I thought my day had ended at 8:00 tonight, I discovered that our phones didn't work and then Nurse Rachett called on my cell phone to say that I needed to have Neosporin at Rand's Room by 9:00 tomorrow morning. While I was delivering the cream to Rand's Room, AT and T called to say - "Ooooooops, we disconnected your phones by mistake!" YIKES! My day started at 4:30 a.m.. Taking my aunt to the airport so she could get on a flight to Fargo. Everything went down hill from there. Rand is fine, he had a long but good day - I'm the one moaning and groaning. I think I will sleep well tonight. Tomorrow has got to be a better day.

The sheets and other goodies arrived for Rand's new bed today so I got those washed, ironed and on his bed. They look and feel great - also the lavender water smells so good. Rand was cozy and comfortable tonight.

As a result of the dr. appointment today, Rand is off coumadin for two weeks and the lovenax (another blood thinner) has been changed. The dr.s agree that his swollen foot/ankle is not an allergic reaction to the meds. but rather a hemorrhage. The two week grace period should allow the body to absorb the blood that has leaked out and the swelling to go down. Knock on wood, formica, whatever is handy. A doctor said today that every roadblock imaginable has been thrown at Rand. If all these lousy things had not happened to him over the months, he would be so far down the road to recovery! As it is, he gets the slats knocked out from under him at every turn and loses ground every time. Today the PT called and excitedly told me that yesterday Rand stood at the sink and moved his left foot! Wasn't I ecstatic?? No, I replied, in April he was walking 400 feet a day! She was stunned - she had no idea. DOES ANY ONE READ HIS MEDICAL RECORDS?? All these people work for the same medical care company and they don't communicate! AAAAARUGH!!!

On a more positive note (I have to try to keep all this stuff in perspective) the microwave oven that broke two weeks ago, the day before the power outage was repaired. I pick it up today, carried it inside, reinstalled it myself and put on the trim kit. It works!! I used the handy-dandy power screwdriver that Rand gave me last Christmas and it worked like a charm and it looks great! Wheeeeeee!

I'd better hit the sack before I think of a thousand more stupid things that happened today. Keep Rand close to your hearts. He is as sweet and handsome as ever.

Love,
Connie

August 9, 2006
Day 191

This was another day of woes and whoopies, good news and bad news. First the woes: the colon infection that Rand had a month ago has returned. He is highly contagious and cannot have visitors until early next week. He started on antibiotics this afternoon so keep your fingers crossed that they do the trick and FAST! We have canceled all special events for the weekend including therapy sessions and his visit home on Saturday for the Jeremie Dr. Block Party. DRAT! If you were planning to stop by, please reschedule for later next week. The second woe is that we are now in the Medicare "Gap" or "Donut Hole" so are paying full bore for all prescriptions. This afternoon I picked up two prescriptions for Rand that will last for two weeks - for a total of $1,000! Yikes! I hope that puts us over the top of "The Gap" and we go back to co-pays from now on. Uff da.

Now for the whoopies: This afternoon Rand said his first full, complete, complex sentence in over six months! He was sitting in his blue chair with his legs up on the ottoman, propped up on a pillow. He carefully and slowly said, "I was wondering if you could put my feet on the floor." WOWIE! ZOWIE! Of course I could and did! He breathed a sigh of relief and thought nothing of the fact that he had initiated a need, said it perfectly, accomplished his goal and that I was dancing around the room whooping and hollering!! WHEEEE! A little later, I showed him the PixStix that I bought for him (at Ace) about four months ago. It is an extension grabber with a pistol grip that allows you to reach items, grab and retrieve them. I've showed him how to use this grabber several times, so did the therapists in Vallejo and here, with no results. He didn't get it. He couldn't use it. He couldn't remember what it was for. Today I showed him how to use it again and he caught on right away! I threw magazines on the floor and he picked them up. I put my PDA on the floor and he retrieved it. I tried to take his sock off and he pulled his foot away but agreed that it was possible. WHEEE! He's making connections! He's understanding, he's "getting it" again!! Now he is talking a lot - he greets everyone at the breakfast table in the morning with "Hello, good morning." I'm thrilled! He doesn't understand what the big deal is!

The other day I bought a five drawer wicker basket chest for Rand's room and took the wicker hamper and white-wheeled cart away. The activity packets are now in the wicker drawers. I'm in the process of removing some of the packets as he has outgrown them and others items are taking their place. Charlotte, a good friend, created a game for Rand out of PVC plumbing pipe connectors from Ace! She is so clever! All the pieces are in an Ace red shopping basket (temporarily borrowed) including directions and dice. It is fun and Rand is getting good at it! Rand has always loved jigsaw puzzles and regularly put together complicated 1000 piece puzzles that required a magnifying glass to see the pieces. He restarted his puzzle career with 50 piece puzzles and is now doing 100 piece ones! If you stop by, the puzzles are in the basket drawers and there is a green felt puzzle-keeper just in case you don't finish in one setting. He loves doing them and needs coaching about organization (grouping colors, finding shades and/or shapes). If you find 100 piece puzzles that are not childish, they'd make a good gift - even used ones with a piece missing!

That's all the news that's fit to print. Keep Rand close to your hearts and think good thoughts for his speedy recovery from the infection and continuing cognitive progress. It is so exciting!
Love,
Connie

August 10, 2006
Day 193

Today was so normal, so quiet, and so calm, that Rand and I slept through the afternoon like two old folks! My usual routine with Rand in the afternoon is to talk, get him to talk, question, get him to think, challenge his memory, jump start his brain cells, sing, write, play games, whatever it takes to keep his mind stimulated. Today the speech therapist was there when I arrived and he was tired when she left. At 3:30 I put his blue chair way back, almost horizontal, he gave a huge sigh of relief and promptly fell asleep. I decided that it was a good time for me to get acquainted with the remote control and all the features of his new bed. I laid on the bed, raised my upper body, elevated my legs, got "the wave" massage feature going and the next thing I knew it was 5:00! Yikes!! Tomorrow is our 43rd wedding anniversary and I laughed to think that we were acting just like old married folks- it wouldn't have been any different than if Rand were home and it was any warm Thursday afternoon in August. Uff da.

The antibiotics are doing their job well and killing the infection that Rand has/had. People still need to wear latex gloves when around him, and fighting the infection has taken some of the wind out of his sails, but he is doing well. Very soon, the doctor thinks that he will be right as rain and is probably no longer contagious. Precautions are being taken because of the other residents in the board and care home.

Thirty-five years ago, I moved into the bathroom down the hall as the master bath was too small for both of us to use in the mornings. The other day it occurred to me that it would make more sense for me to move back into the master bath and clean one bathroom instead of two for one person! DUH! I have been busy doing that and it is working well. Amazing that it took me so long to figure that out!

This morning I had my 5,000 mile medical check up. The doctor and I were talking about Rand and she asked me if I was depressed. I said no, I didn't think so and promptly started crying. What was that all about??? I haven't done that in weeks! Uff da. I am under a lot of stress and pressure, but am not depressed, at least not by my definition. Oh my, maybe I need to keep a closer eye on myself.

Keep Rand close to your hearts and in your thoughts and prayers. He is even more handsome now than he was 43 years ago!

Love,
Connie


August 12, 2006
Day 195

This was another calm, relatively pain-free day culminated by the Jeremie Dr. Block Party. I gave Rand his shot this morning and prepped him about the afternoon activities. He seemed excited and ready to go. When I picked him up, he was all decked out in his new Spam shorts, a gift from Annie, and our new "R and C Trucking Co." t-shirts, designed and made for us by Rand's sister, Karen. As we were driving away from his house, he started fighting tears. That continued until he was situated in the center of all the activity across the street. From there on, he was King of the Hop! All the neighbors were there, made a fuss over him, talked, greeted, hugged and kissed him. He ate like a horse - drank a beer and loved all of it. I took him for a walk up and down the street but he wouldn't stop at our house. Finally he indicated that he wanted some red wine. In order to get that for him, I told him that we had to go to our house. He reluctantly agreed but only to sit in the backyard while I got the wine. He refused to go in the house. We rejoined the party and about 7:00 he said he wanted to leave. With the help of some neighbors, we got him in the car and I gave him a tour of the neighborhood before we headed back. He was happy to get back to his room and content with the outing. I thought it went well, but it is hard to say what Rand thought. I think he enjoyed himself, I know he loved the food, but the rest is difficult to decipher. I think he didn't want to go to our house because it is too hard to leave. But then, that's me projecting onto him and that is not fair nor always accurate. When I asked him why, he shrugged and said he didn't know. Below, there are a couple of pictures of the afternoon.

It is Saturday night. If Rand can make it to Monday morning, it will be the first time in months that he has had a full crises-free week and the first time in five weeks that we have not spent one weekend day in ER. That would be such progress, I can't tell you!! Keep your fingers crossed.

Also, keep Rand close to your hearts. He is ready for visitors and coaches any day of the week!

Love,
Connie

Sunday 8/13 - Day 196

Rand is fine - but our internet service is not, hence the delay in the daily epistles. I upgraded our DSL service and switched our phones to Earthlink last Friday and everything has been a mess ever since. I knew it would be a pain, but I never imagined that it would be this bad. I am writing this Sunday evening knowing that I probably can't send it until Wednesday at the earliest. This will be a running ejournal until the internet gods/devils get their act together.

This is the first full week out of five weeks that Rand has not had a health crises and has not spent a day in ER! That is something of a miracle, a total relief and a real whoopee! We are seeing progress in Rand's strength, speech and comprehension and now it looks like he might have a fighting chance of continuing without a setback. That will be a first in almost seven months.

Rand and I went for a walk today and he was intermittently teary. He couldn't tell me why and was irritable off and on all day, which is unlike him. I hope he isn't getting another bug. He said that he does not want to go to our house again - ever. He said that he doesn't like the house, he doesn't want to come here for lunch or to spend an afternoon. He couldn't explain further, just an emphatic, "NO!" whenever I mentioned it. I asked if it was too painful to leave and he said no. Maybe one of these days he'll change his mind or be able to explain it in a way I can understand. My sister reminded me that Dad was the same way when he could no longer live at home. He wouldn't even look at the house when we drove by and refused to discuss it.

Man, with no internet, no email, I got all the ironing done. Now I should tackle the floors. I'll look around for something fun to do instead.
__________________________________
Monday, 8/14 - Day 197

Rand was much happier today. He needs so much sleep and I forget how tired he gets after any unusual activity. The Block Party wiped him out and it took until today for him to recoup. We walked out to Coleman Ave. and watched the workers and huge machines tearing/chewing up the blacktop, big dump trucks roaring in and out of the area, lots of men leaning on shovels. Rand loved it, especially the guy who drove the earth-mover - he waved to Rand every time he passed by.

The weather is glorious - great sleeping weather. A friend who moved away is coming by tomorrow to see Rand and then we are going out for lunch. I'll go back and spend time with Rand later in the afternoon.

___________________________________
Tuesday, 8/15 - Day 198

I'm playing "Shot Fairy" again this week. I gave Rand his shot early this morning and he didn't even wince.

This business of not having a computer is the pits. In order to access the functions of my new phone system, I have to do it online. WRONG! I bought a GPS system and to read the manual, I have to go online. WRONG!! I have to email Rand's doctor about increasing therapy. WRONG! My phone is ringing a lot with friends calling to find out what is wrong with Rand or me because they haven't heard from me for so long. Other than being supremely frustrated and fed up with Earthlink, everything is fine. !@#$%%^&*()! The technician is theoretically arriving between 8:00 a.m. and noon tomorrow. If that doesn't happen and/or if he/she cannot fix it on the spot, "The Wife" may be banging on the doors of the Earthlink headquarters in downtown San Jose.

Today I spent a lovely afternoon with an old friend. We had lunch, shopped, caught up on each other's business and gossip. Great fun. Later this afternoon, after all of Rand's therapies were over, we went for a walk in the neighborhood. Rand was in good spirits and we had fun together. I again asked him if he would like to come home one day for lunch and to spend the afternoon. He emphatically said, "YES!!" I asked him why he had said no the other day and he looked at me like I was crazy. Who would turn down an opportunity to go home for a visit?? He didn't remember his adamant feelings from Saturday. Here I go again, taking everything at face value, assuming that what he says is what he means. I'll catch on one of these days.

Keep Rand close. It has been eleven consecutive days since he had medical crises and/or was in ER. That is a record for the last (almost) seven months.

Love,
Connie
______________________________
Wednesday, August 16 - Day 199

Rand was bright-eyed and bushy tailed at 7:00 this morning when I arrived to give him his shot. I think this will be another good day. The swelling in his right foot has gone down so much that I can see the beginnings of the arch in his foot. His leg is back to normal size and I bet by next week his foot will be too. Then I expect the doctor to start him on coumadin again and possibly take him off the daily shots.

Several people have asked about the cost of Rand's care, so I decided to give you a quick rundown. The bills for Rand's monthly care run about $7,000. That includes his board and care cost, prescriptions and miscellaneous medical and supply expenses. That does not include the cost of specialized clothing, things to make his life easier or more enjoyable and other items. That amount varies from month to month. We do not have long-term care insurance so all of the above are out-of-pocket expenses. When Rand is in the hospital or a nursing home, then everything is paid for by insurance, otherwise it is our nickel. We all know that $7,000 a month is only going to go up in the future. Part of the stress and pressure of our situation is keeping that additional flow of funds coming. Rand did a wonderful job with our finances and investments over the years, but it is not a bottomless pit. I estimate that we are comfortable for the next couple of years and then I'll have to start being creative. Later this month, I am meeting with our CPA to reorganize our assets and get them consolidated in a way that makes sense to me. I will feel so, so much better when I know exactly how to access which funds and in what order and to have them at my fingertips. Rand's situation is unique because of the people who own the house, the caring staff, and the resident: staff ratio. If he was to go to a nursing home, you could add about $1,000 to $2,000 a month to the above expenses. The moral of the story is - don't get sick or old. If you must do one or the other, be prepared!! Old age is not for sissies or those with shaky finances.

WHEEEEEEE! The technician just left and I am back online - with 92 emails to deal with. Uff da. More later.

Love,
Connie

August 17, 2006
Day 200

Rand is the healthiest he's been in 200 days and has been hospital-free for 13 days in a row. I am so grateful for that small/huge miracle. He is finally getting the healing time he has so desperately needed, the sleep, rest, and quiet environment.

Tomorrow I am taking him for a manicure and pedicure! He has been complaining about his nails and I can't get them clean. The left hand is so stained from food and his feet need TLC after recovering from the swelling. Connie's Traveling Beauty Shoppe isn't up to the job. Following that treatment, we'll take a stroll around the mall and be back at Rand's Room in time for lunch. He has speech therapy in the afternoon so he will be all tuckered out.

I didn't plan it this way, but today was the first time (outside of Vallejo) that I didn't go to see Rand. I had errands in the morning and two doctor's appointments in the afternoon. By the time I got home it was too late and I was too tired. I'll be interested to see if Rand remembers that I didn't show up.

A friend and former speech therapist worked with Rand today. His vocabulary now has some two and three syllable words that he pronounces well and he is trying mightily to put together complex sentences. It is still difficult to comprehend what he is saying, but I think we are past the total gobbledy-gook stage and on to the next phase. One of these days, it will really start to come together for him - for his sake I hope it doesn't take another 200 days! Another speech therapist friend will sit in on the session tomorrow and may pick up some pointers for working with him too.

Several of you have mentioned that I only talk about Rand in these epistles and not about how I'm doing. Thank you for asking. I have mostly good days and a few bad days, good nights and some bad nights. I would say that over 90% of my waking hours are positive, upbeat and I'm so glad that I have boundless energy. Most of the time I am so swamped that the days fly by. I get up in the morning and the next thing I know, it is time for bed. I sleep like a log with no help from chemistry. That needed help ended months ago. Recently I have started feeling a little depressed and/or discombobulated and I'm not sure why. I'm glad I'm going back to work in the next few weeks - I think I need another side to my life. Now that Rand's health has stabilized, I feel better about leaving him. I will be talking with Meg again and trying to get a handle on what is going on with me. Maybe now that Rand has calm, smooth sailing, mine will be getting rocky. We'll see.

Keep Rand close. Keep him in your thoughts and payers.

Love,
Connie

August 18, 2006
Day 201

This morning I apologized to Rand for not being there yesterday. He looked confused for a minute and then said, "Oh, yeah." If I hadn't said anything, he wouldn't have remembered. I should have known better. Lesson learned.

Rand LOVED his manicure and pedicure this morning! Before his stroke he laughed at the idea of his having either one done, even though several of his friends do. Today, he kept saying, "Wow!" as he watched the progress on his feet. I think we will have a monthly date for this indulgence. We had time to stroll through several stores and Rand bought a new tan shirt, sienna red shorts and pjs. We also stopped for a bear claw and apple juice at a small bakery. All in all, it was a grand outing for both of us. We used the local paratransit van and everything went like clock work. This afternoon he had speech therapy, a couple of former students stopped by and I was with him later in the day. I think he will sleep well tonight.

Tomorrow, a friend is coming over for brunch and a visit with Rand. I plan to wash his windows again while they are visiting.

I met with Meg this afternoon and as usual, she helped me understand what is going on with me, made some suggestion on how to deal with it and I left feeling much better. I hope that each of you will find or already have a "Meg" that can help you out when a crisis occurs. She and her skills are a godsend - plus I connect with her. If the situation were different, I think we would be good friends. She pointed out that I have been in crises mode for close to 200 days, running on adrenalin, reserve energy and who knows what. She said she was surprised that I haven't gotten sick. All the feelings and emotions that I have had have been pushed down, beaten down and not dealt with as I had much more important things to handle. Now, those emotions and feelings are starting to creep out into the open, into my consciousness, as Rand's and my respective lives have calmed down. I will have to acknowledge and deal with them as they occur and then get on with it. She made some good suggestions about taking care of my self - starting with a visit to a day spa. That never occurred to me and I think I will do it. I could really, really use a day of pampering. I wonder if they kick you out if you snore during a treatment?? There is one nearby in conjunction with a nice hotel - a day at a spa, with a massage, dinner and wine in the room, a good night's sleep, breakfast in the morning - Yikes - does that sound good or what!?! I think I'm ready and I know I need it.

I'd write more, but I have to look up some phone numbers!!

Keep Rand close in your thoughts and prayers. Each day he is better and better.

Love,
Connie

August 19, 2006
Day 202

Is it possible to be happy and bored at the same time? I am and I am. I'm happy because life is now boring. This epistle will be boring and I'm happy. Everything seems routine now because every day is a good one for Rand. We have hit and passed the two-week mark of no medical crises, no hospitalizations, and no ER visits. Boring. There's not much to report. Rand is happy and healthy day after day. He looks great, eats and sleeps well, enjoys being outdoors and having friends drop by. By boring, I mean same old, same old - I don't mean dull, or unexciting, just the same old routine for fourteen days in a row. Happy and boring. On Thursday we see the doctor again. Rand's foot is slowly regaining its normal size and shape, so I wonder if there is coumadin in his future? If so, I hope, hope, hope that the boring routine continues and coumadin doesn't bring back the bad old days.

Today I made reservations for my day/night at the spa and hotel on August 31 - the first day I have free. I will check in after lunch, have a facial, an "Ocean Scrub" body treatment and a massage. Yikes - it sounds decadent! (Sometime, remind me to tell you the story of my first and only massage experience. Uff da.) Anyway, I will probably fall asleep in my room when the three hour indulgence is over. Maybe I'll bring a bottle of wine, some good bread, cheese, a book and totally flake out. (Their restaurant is closed - pooh.) I'll head home (10 miles) the following morning. I'm excited!

Keep Rand close to your hearts, in your thoughts and prayers. He's finding life to be very exciting these days!

Love,
Connie

August 20, 2006
Day 203

Well, we had another peaceful, enjoyable, boring day. Rand was happy, played Blackjack with a friend this morning, had therapy and we went for a walk around the neighborhood this afternoon. He had one stabbing pain episode, reminiscent of the waves of pain a few weeks ago, the first in a long time. It was blessedly short, but a tough reminder to both of us that we aren't far from the edge of the woods. This afternoon we started a Spider Man puzzle and then Rand was ready for a nap. About 1:00 I told him that I had to leave by 3:00 today. He checked his watch at 2:40 and mentioned that it was getting close to the time I had to take off. At 3:10 he said I should leave. I knew he could tell time in relation to meals, but I didn't know how accurate he was in other contexts. Amazing! Then again, he was ready for a nap! I'll see him at the crack of dawn tomorrow, as I have to give him his shot for the next two days.

Keep Rand close - he will always need your thoughts and prayers.

Love,
Connie

August 20, 2006
Rand’s Progress

Sometimes I think I am giving you a false impression of the progress Rand is making. I get so excited and involved that I fear I lose sight of the forest for the trees. Yes, Rand is making progress every day. In the big picture, his progress is minute, infinitesimal but hugely important to me. I fear that I am giving the impression that Rand is on his way back - given time and therapy, he will be OK again. That will not happen, no matter how much progress he makes. Rand's basic personality is still there, undamaged and as sweet as ever. His physical abilities are severely damaged and may never be repaired. His speech is not understandable and much of what he does say is out of context. The cells in his left-brain are dead and will not return. His right brain functions cannot take over for the left-brain in any meaningful way.

Rand is now much like a three or four year old child. He can do some adult things, but basically, he is more like a pre-schooler. He was always fastidious about his clothes, appearance, grooming. Now he wears a bib, frequently has food on his face, would go for days without shaving or brushing his teeth and he never combs his hair. He has food stains on his nails, isn't concerned or even aware of haircuts, mustache trimming, soiled clothing, showering, etc. Every day I shave him, comb his hair, check his mustache, nails, etc. Under normal circumstances, he would be so upset by all these things and now he isn't even aware of them. Fortunately, the staff takes such good care of him and many of these things are done for him every day when they can get to them. They make sure his clothes match, his socks are correct, and everything is appropriate. For some reason, Rand is aware of food/crumbs on his shirt and chair and brushes them off. He is aware of the angle of the blinds in his room, the AC and ceiling fan. Sometimes he likes to look out the window and watch the action on the street.

His memory is very poor, except for people. He does not remember teaching for 38 years. Fisher Middle School in Los Gatos means nothing. He does not remember our 43 years of marriage, our trips, driving a car, handling money, shopping, or either of our names. He cannot use a phone and doesn't remember that he ever did. I wish I knew what he thinks about when he sits alone in his room. He says he doesn't think about anything and maybe he doesn't. He doesn't seem to miss or yearn for anything that is gone. He doesn't indicate that he wishes he could walk but he does get frustrated that he cannot make himself understood. He doesn't want to be read to, to listen to books on tape, watch the news, listen to music or get involved in any activities in the home. When someone starts something in his room, such as a puzzle or singing, he will join in, but he will not initiate anything on his own. There are family pictures on the walls of his room, some of his famous neckties, various pieces of memorabilia that were special to him and he doesn't connect with any of it. I wonder if he is even aware that it is there.

Rand's Room is now his home. I don't think our home means much to him any more. In his room he is safe, familiar, in a space that he can comprehend and manage. The caregivers love him - he's their favorite. They take wonderful care of him and, like me, when he is happy, they are happy. They congregate in his room in the evenings when they can, and sing along with the karaoke machine on his TV. They laugh, sing, and have a good time together. Rand is always relieved when we return to his room after being away several hours.

Now this is sounding like a real downer! I don't mean it to be, I just want to be sure that I have not given you a false impression of Rand's progress. Progress for him right now is being healthy, having a spark, being pain-free, eating well, being able to move a bit to help during a transfer, to smile, to make and/or get a joke, to participate in things going on around him, to add new words to his limited vocabulary, to sleep through the night, to be interested in something - even for a short while. All these things are signs of how far he has come in the last seven months. Much of this progress has been made in just the last month or six weeks. Please don't get me wrong when I whoop and holler about Rand's progress. Please remember that everything is relative.

Please keep Rand close to your hearts and in your thoughts and prayers. Every day brings a new bit of progress.

Love,
Connie

August 21, 2006
Day 204

Every evening I send this epistle to about 50-60 friends and relatives in the US and Norway. From there it has taken on a life of its own. People forward it to classmates, family members, neighbors, so many others who knew Rand. Over the months, my best guesstimate is that at least 300 people receive this ejournal every day. Uff da! Hence, the entry last night about Rand's progress. It was not aimed at those of you who see Rand frequently, but to those of you who don't and especially to those who haven't seen him in a long time. The responses have been interesting and not what I expected. Some people said they cried because they expected and/or wanted Rand back. Most understood and were glad that I had brought them up to date. One friend called and said that she was so glad I had written that because she now knows that I am OK. That I am dealing with the realities of Rand's condition and not the false hope that Rand will be back and life will go on. I hadn't thought of it that way and it certainly wasn't my intent. The more I thought about her comment, the more I thought that maybe the "Rand's Progress" entry was my way of acknowledging my acceptance of Rand's reality. I am crying as I type this - dealing once again with what I thought I had dealt with months ago. Meg was right - these feeling are surfacing again and again and this time I really have to deal with them head on.

Rand had another grand day. He was happy and content from the time I gave him his shot early this morning until I left late this afternoon after my second visit. Friends came by and took him for a walk, which he always enjoys. We worked on the Spider Man puzzle, and with coaching, Rand can do well. Without someone there, he will not work at it. While we were puzzling the puzzle, Rand took my hand and said, "Memories are bad." I talked to him about the comment, and he repeated it again. I asked if he had good memories and he said no. I told him that I had lots of good memories and not all memories were bad. He repeated the sentence again. He couldn't explain himself and I finally let it go. Did he put three words together at random? Did he really mean that? Is he trying to convince himself? Am I reading way too much into the comment? I'll probably never know.

Tomorrow is another day full of good things. I'm making a loaf of honey-sesame bread for the residents of Rand's House. They appreciate my baking and I love having an audience for my favorite pass time. A win-win situation.

Keep Rand close and hope that he has good dreams, not bad memories.

Love,
Connie

August 22, 2006
Day 205

This was another in what has become a series of typical days for Rand. When I arrived to give him his shot this morning he was polishing off a big breakfast. When I returned in the early afternoon, he had just finished a physical therapy session and was tired. I shaved him, trimmed his mustache, applied some foo-foo water, got him tucked in for a nap. From there I went to the hospital to see our friend who had his hip replaced this morning. He is doing so well! I returned later this afternoon with some KFC for Rand and woke him up. He had been asleep the whole time I was gone! Rand enjoyed a few bites of KFC, we talked for a while and I left before he went in for dinner. He was happy, talked a lot, was in good spirits. Tomorrow we will go outside for a walk and maybe finish the Spider Man puzzle. And so it goes. The next hurdle is Thursday's doctor's appointment. I hope yet am afraid that Rand will go back on coumadin. He needs that medication, but it has caused nothing but grief in the past. Keep your fingers crossed that he can tolerate it this time. The alternatives are zero to none when it comes to breaking up that nasty DVT.

All is well. Keep Rand close and in your thoughts and prayers.

Love,
Connie

August 23, 2006
Day 206

Tonight I threw my car and house keys in the recycling bin - had to dump the whole thing on the sidewalk to retrieve them. Uff da. I think I need some time at a spa!

Rand had another good day. He has always been reluctant to join the other residents in the dining area for meals, preferring to eat alone in his room. I have always insisted that he have meals with the group, but once in a while the staff will serve him lunch in his room. As of yesterday, he is asking to join the group! He doesn't want to be left alone! WHEEEEEE! At breakfast his week he has greeted each person with "Hello, good morning!" They were so excited! He is trying to talk so much - his success rate is better and better all the time! He's a long way from any kind of conversation, but he's improving all the time. It looks like he will begin out-patient speech therapy in the near future - another whoopee!

Rand had a nap today, a visit from the Home Health Nurse (Rachett), physical therapy, he and Manny, a caregiver, finished with Spider Man puzzle and we went for a walk. Tomorrow we head off to the doctor in the morning. Full report to follow.

I had a nice dinner tonight with my good friend. It was good for both our souls as her husband just had his hip replaced yesterday and he's doing so well. A martini for her and a Manhattan for me worked wonders for both of us!

Keep Rand close in your thoughts and prayers.

Love,
Connie

August 24, 2006
Day 207

Today was Rand's two week check up since being taken off coumadin. He is back on coumadin tonight - keep all digits crossed that it works well this time and that there are no more reactions such as the hemorrhaging of last time. The doctor discussed surgery again as an alternative if coumadin sets off another revolt. This time he talked about vascular surgery to remove the DVT rather than the operation to insert a filter into his aorta. I hope neither one is necessary. Rand has seven more days of abdominal shots then those will finally be done. His foot is still swollen, but nothing like it was.

The doctor also noticed an improvement in Rand's cognitive functioning and vocabulary today. He said that between months six and 12, the nerve endings start growing and connecting again and that is what is happening. There are billions of nerves that have to connect so it is a long, slow process, but then, we understand long, slow processes! He has referred Rand to a neurologist who specializes in stroke patients to see if he can get to the bottom of this horrendous pain that continues to surface. Rand has been pain free for a couple of weeks, but the pain has returned in the last three days. How wonderful it would be to get that under control and maybe cut down on the number of medications and just have a few that really do the job. We have an appointment next Friday.

I have decided to postpone my spa day as I will have to be up bright and early the next morning to take Rand to more doctor's appointments, lab tests, etc. I want at least 16-18 hours of R and R and it can't happen on the day I had planned. Who knows, maybe the next appointment will allow me a full 24 hour break.

Keep Rand close. Keep good thoughts about the coumadin - it just has to work this time.

Love,
Connie

August 25, 2006
Day 208

The horrible pain Rand has had in the past is returning again each day now. He had a miserable episode this morning, had two narcotic pain pills and was served lunch in his lounge chair today so he could relax. The therapist worked with him this afternoon and he was OK. When I saw him later this afternoon, he was in good spirits and pain free, thank goodness. Even though the pain has returned, it is much shorter lived and less frequent, which is a blessing.

This morning we signed a gazillion papers for the sale of some property and Rand signed and initialed all of them in cursive! The notary had to ask him questions about his understanding of what was going on and what he was signing. Rand understood but couldn't respond appropriately. The notary accepted it anyway.

We also went for a walk today, saw the neighbors and caught up on some local goings on. The weather is glorious so a walk every day is a pleasure.

Rand wrote/copied a note to our friend who just got out of the hospital today. He told me what he wanted to say, I printed it and Rand copied it. It was a laborious task, and he redid it four times, but he was finally satisfied with the job. I was so proud of him! He blew it off as a poor job but acceptable. He doesn't see any improvement in his communication at all. I guess he only remembers what he wanted to say, even though he gets so frustrated with his inability to talk. His comprehension has improved so much - I would guess that it is about 85-90% - up from 60% just a few weeks ago. His ability to attend to conversations and tasks has vastly improved, too. I'm going to try the computer again one of these days. Those little bugger nerve endings better keep on connecting! I can see improvement in Rand every time a couple thousand get reconnected!

Keep Rand close in your thoughts and prayers. Think good thoughts about being pain free and busy nerve endings!

Love,
Connie

August 25, 2006
Continue?

Dear Friends,

As the seventh month since Rand's stroke comes to an end, I think these daily eEpistles should too. I will keep on writing them as a daily eJounal and therapy for myself, but I will stop sending them out to everyone. If you would like to continue to receive these emails every day, please let me know this week and I will keep you on the email list. Otherwise, I will send an update on occasion or when there is a reason to inform you of Rand's woes and/or whoopies.

I think that Friday, September 1 is a good day for the last mass emailing. If I haven't heard from you by then, I will put your eAddress on a "periodic update" list and keep you informed as events warrant. If you'd rather wait for the Christmas letter update, let me know that too!

Thank you for being so supportive, such dear friends, for being there for Rand and me as we travel through the darkest time of our lives. We will always need your good thoughts, prayers, visits, phone calls, cards and email. Please keep them coming. We will also be thinking of you and the special part you have played in our lives, especially during this time.

Please keep Rand close to your hearts.

Love,
Connie

August 26, 2006
Day 209

Rand had a few severe pain episodes today, but no painkillers were needed. He endured, the pain passed and he was OK. In fact, he had a very good rest of the day. He had a blood draw this morning to check on the coumadin progress in thinning his blood and there was none - progress that is! His blood viscosity was 1.1 (base line) on Thursday without coumadin and the same today after two days of it. He will have another blood test Monday to see if there is any change. It should be between 2 and 3. So far, there are no side effects. I'm watching his foot and leg like a hawk!

We went for two walks today, one long one and a short one. A friend stopped by and we had a good time together. Rand was perky, talkative and his usual charming self.

Tomorrow friends from Sunol will be here for brunch and then we will take Rand, a cooler, ourselves and go for a walk around Almaden Lake Park in the afternoon. The weather is so glorious that is should be a wonderful day. Full report tomorrow.

Keep Rand close.

August 27, 2006
Day 210

This was another good day for Randbo. He didn't have any pain this afternoon and our friends from Sunol and I took Rand for a walk around Almaden Lake Park. They brought along wonderful fruit snacks and we enjoyed them at a picnic table before going off to watch the ducks, egrets and Canadian geese frolic and dive. The weather was glorious with a great breeze and we spent a couple of delightful hours together. Rand was quiet today, but as soon as Solveig and Bill left, he started talking a blue streak! I couldn't understand him, but, again a new word showed up in his vocabulary - "modifications!" I so wish I knew what he was saying, but after all these months of trying, I'm still stymied.

We have a busy week coming up. A friend sings in a barbershop quartet and he is bringing his group to practice with Rand on Wednesday morning! What a treat that will be!

Along with daily therapy sessions and frequent blood draws, Rand gets fitted for a new brace for his right leg and has two doctor's appointments this week.

I've decided to try up setting this epistle, or at least the periodic updates, on a blog. As soon as I feel secure with it, I will send you the address and you can check it whenever you want.

Keep Rand close in your hearts and prayers.



August 28, 2006
Day 211

Rand was rather poopie today - maybe he didn't get his nap in, what with the nurse drawing blood, changing the dressing on his ankle, taking his vital signs, Thuan (the CRN) putting him through his PT paces, me taking him for a walk - Whew! Tomorrow afternoon we are off to have Rand fitted for a new leg brace. I also talked to the powers that be today and Rand is getting a new customized wheelchair made just for him! The one he has now is an "off the rack, one-size-fits-all," Kaiser issue run of the mill chair. In a couple of weeks he will be measured from head to toe and a new Rand Elness Special will be made just for him. I'm sooooooooooo glad! This one is clunky and difficult to maneuver for both of us. Rand needs one that gives him some mobility, is easy to move, lighter weight, etc. It will have a rigid frame which is good for Rand but difficult to pack around. In order to fold it and put it in the trunk I'll have to remove the wheels first, then fold it down and hoist it into the trunk. I guess it isn't much lighter, but with the wheels off it has to make a difference.

My "Back to Work" project for me is sputtering along. I have several irons in the fire but not all of the ones I was planning on are working out due to various things, including my availability. Actually, that works out well, as Rand's needs are starting to pile up again. I suspect that it will be later in Sept. before I know what's happening, with whom and when. In about two weeks, Rand will start outpatient physical therapy at Kaiser and will have to travel there at least once a week. I have made arrangements for Thuan to go with him in the Outreach van so Thuan can be instructed in the next steps in Rand's therapy. I will go every chance I have, but I have to have some flexibility, too. It is a win-win situation.

If you have ever had lutefisk, the Norwegian National Fish, or have heard Rand and me talk about it, the smell, the consistency, etc. you will appreciate this news. Glenwood, Minnesota, near Rand's hometown, is the Lutefisk Capital of the World. Every Sons of Norway Lutefisk dinner from coast to coast buys their lutefisk from the Lutefisk Factory in Glenwood. Now the factory is selling frozen Lutefisk TV Dinners!!! Uff da!! Yikes - can you imagine how many Norwegian lutefisk lovers there have to be in order to turn a profit on those?? Double Uff da!!!

With that thought, I'll ask that you keep Rand close. It is much, much easier than eating lutefisk!

Love,
Connie



August 29, 2006
Day 212

Rand had another good day - he had some painful moments, but otherwise enjoyed himself. This afternoon he had his right leg casted/molded for a new foot/leg brace. It will be ready in about two weeks. In the meantime, the brace guy retro-ftted his old brace so it will work until the new one is ready and then it will continue to act as a backup. That is excellent as he has his PT evaluation this Thursday rather than three weeks down the road. There was a cancellation in the outpatient schedule and I grabbed it! He hasn't been able to wear the old brace for about a month and he said it felt good to have it back on today.

There's not much new. Rand was in good spirits, laughed, talked a mile a minute, enjoyed the outing, and we got home just in time for dinner. I think he will sleep well again tonight - he has another big day tomorrow with the barbershop quartet coming to sing, a PT session, visitors, etc.

Keep Rand close.

Love,
Connie


August 30, 2006
Day 213

Did you notice the moon tonight? I hope it shone as brightly in your part of the world as it did in our backyard. It was spectacular and a perfect ending to a perfect day for Randbo. I won't go so far as to say that Rand's day was spectacular, but it was darned close! I can't remember the last time he had such a happy, giddy, fun day! Me too.

It all started this morning with the barbershop quartet practice in Rand's home. They laughingly call themselves "The Pacemakers" and they have so much fun singing together. Rand, the other four residents, the caregivers, a friend and I gathered in the main room to hear their rehearsal. The quartet gathered at one end of the room and I had Rand facing them in his wheelchair. They sang all the old barbershop standards, like "Let Me Call You Sweetheart" and "My Wild Irish Rose", to "America the Beautiful" to "Silent Night." Rand sang along with them in his baritone, harmonizing perfectly, using the words as they came to him. One of the caregivers and I had to go out for kleenex more than once! Rand's voice is so soft now that it is often hard to hear him unless you are sitting right there. Sometimes he stopped singing and it looked like he was struggling with his emotions, too, especially during "America." He sang, he laughed, he hummed, he clapped (first time I have seen him do that!), he gave the group a thumbs up. The good feeling and memories lasted all day. The caregivers were humming and singing the songs all afternoon! Rand and I talked about it later in the day and he smiled and laughed at the good time he had singing along this morning. What a special group of men to come all the way over here just to include Rand in their rehearsal!

This afternoon Rand had his final in-home PT session with his wonderful therapist, Paula. I could hear her jolly, booming laugh all the way out to the street when I pulled up! I have talked to her many times on the phone but I had not seen her in action with Rand and I was amazed. Rand and Paula have a great relationship, plus he wanted to show off for me, so the results were awesome! He got up out of his wheelchair and into a standing position almost alone. Paula supported him a bit, but he did it basically alone. Manny, his primary caregiver, had one hand on Rand's right thigh and one finger in the velcro strap on his right shoe, to help him move his leg forward. Rand's right arm was in a sling and his left hand was on a hemi-walker and he walked!!!! Granted, he had help moving his right leg/foot, but compared to what I have seen in the past - Rand was really walking!! He didn't need to be reminded in which order to move his feet and walker, he just did it like you and I would. He held his head up, his shoulders back, he had a big grin on his face and he walked in a full circle around the perimeter of the room. Paula walked backwards in front of him as insurance and I scurried around moving furniture out of the way. What a total thrill!! Then Paula told Rand to walk to me and I would give him a big kiss - he did and I did! I don't know who was happier in that room, Rand, Paula, Manny or me!! Rand had one severe bout of muscle spasm pain, but otherwise his day was flawless! It just doesn't get much better than this. WOW!

I'll leave you tonight with that grand report. This was the best day Rand has had in 213 days - bar none! WHEEEEEEEE! Keep him close to your hearts and in your thoughts and prayers.

Love,
Connie

August 31, 2006
Day 214

This was another excellent day for Randbo - second only to yesterday. He continues to amaze me at what he can do and how much, far too much, I do for him that he can do for himself. Does he complain that I do things that he can do? Nooooooooo! I'm catching on, slowly but surely.

This afternoon he had his out-patient evaluation for physical therapy. The PT put him through his paces for over an hour and he didn't get tired. He had pain because of the therapy, but not because of muscle spasms. He took a pain killer before we left home so that helped.

Every time the PT wanted him to stand up from a sitting position, from a chair or platform, all she did was tell him to stand up and he did! YIKES! I lift him, single-handedly, from point A to point B, and let me tell you that he is no Tinkerbelle! Shoot, I could have told him to stand and he could have been doing it for some time! She was close to him just in case, but Rand did all the lifting, all the heavy work. Granted, he can't get out of his blue chair alone, but he sure can get into it. He can transfer himself from the bed to the wheelchair, to the commode, with a whole lot less effort than we've been using. Once again, he walked with help for his right leg, standing tall, head up, shoulders back, using the parallel bars for support. He walked the length of the bars, then walked the length backwards, then forward, then backwards, over and over again. There is a full length mirror at the end of the bars so he can watch himself. After a while he was making faces at himself in the mirror instead of worrying about his feet! Cute! And sooooooooooo much progress! She also did several exercises to strengthen his trunk muscles, right thigh and leg muscles.

One interesting thing she brought up was applying for a repeat stay at Vallejo. I talked to Rand about that awhile ago, and he said NO, NO, NO! The PT said that if we wait much longer, he will not benefit from it. That is a real dilemma for me and I don't know what to do. The PT said that not much of anything can be done for his right arm. It is a dead issue/limb and always will be. She feels that any effort put into it will be wasted. However, with his right leg, she thinks that he can learn to use it enough that he could be able to walk, with support, for several feet. That could be a major help with transfers, getting into and out of cars, using the bathroom facilities, any number of scenarios. Now I know that when Rand was in Vallejo last time, he was quite unaware of time, things around him. He was so lonely, in such pain, but he made such progress, Now he is much more aware and I think I would have to live there most of the week in order for him to be reasonably content. I think he could make progress and probably retain it, this time. On the other hand, is the progress worth the pain? The physical pain is one thing, the miserable living conditions for both of us is another. His progress might be just as good being here, in familiar surroundings, in the room he knows and loves, surrounded buy wonderful caregivers and friends. Even though my returning to work is sketchy at this time, that would sink it for sure. Is all of it worth it? I don't even know where to find the answers. The PT has strong feelings both ways, too. I'll pursue it with the physiatrist and his doctor and probably Meg. Do you have any opinions?? Send them along.

Tomorrow is the last mass daily email about Rand, his woes and whoopies. If I haven't had a request to the contrary from you, the blog will become the update vehicle. Please check it often. I have attached the address for Rand's blog to my signature.

Rand had a wonderful day and I hope you did too. It is such a joy to write about his positive, healthy days, day in and day out.

Keep him close.

Love, Connie

Tuesday, August 29, 2006

January 28 to February 28, 2006

Rand’s Progress


January 28, 2006

This morning Rand had a massive stroke. It is too early to tell how much damage has been done, but it appears to be significant at this time. He is paralyzed on his right side and is unable to talk. He has difficulty understanding and is very confused. He is in the best stroke facility in the nation and they are doing everything they can for him. The next 72 hours are critical. He is in Good Sam ICU and is not able to have many visitors, no flowers or cards. But he does need all your prayers and good thoughts.

He was healthy as a horse and going about his usual routine until 9:30 this morning when he collapsed. The paramedics were here within minutes and he was in ER minutes after that. He has one-on-one nursing care as they try to stabilize him. The doctors have done everything they can, including surgery to try to "blast" away the blood clots in his left carotid artery and smaller blood vessels in his brain. That procedure was not successful.

I'm sorry to have to do a mass communication like this, but under the circumstances it seems like the best way. Please contact me via email or send cards to the house. Rand will love to hear from you. I'll answer as many phone messages as I can but it might take awhile.

Thanks - keep him tight in your prayers.
Love,
Connie




January 29, 2006

Thank you so, so much for your emails of concern, thoughts, prayers and good wishes. This has been a roller-coaster day for both of us. It started this morning with a conference with the neurologist following another CAT scan. He told me that Rand was blind, paralyzed on the right side, with no hope of regaining speech and with severe damage deep in his brain. He told me that Rand was gone and would not be back.

This afternoon a speech therapist worked with him and told me that by tomorrow (Monday) I would see big changes, including in his vision. He was lethargic, unresponsive, confused all day, but his color was better and his eyes showed recognition of the dozens of friends who came to visit. This afternoon, about 3:00, he started giving appropriate responses to questions, by 4:00 he smiled a couple of times, by 5:00 he said hello and goodbye as clear as a bell. He kissed me with a real pucker! He waved goodbye as I left for the evening - this is a miracle in progress! I don't want to give the impression that he is well today, his progress was minute compared to what we have ahead, but you know what - Rand isn't gone, he's coming back, there is hope galore!!

Our dear friends, we value your friendship and are overwhelmed by the outpouring of support, help, comfort, time and generosity we have experienced in the last 36 hours. All of you are cherished. We may be calling on you for help in the months ahead, but right now the medical team is doing everything possible and time will heal some of the damage. Physical and speech therapy have already started so Rand's progress should be visible every day. You and I know how strong, patient and tenacious he is. Those qualities will serve him well in the months ahead.

Love and thanks from both of us,
Connie




January 30, 2006

Thank you for all of your thoughts, prayers, offers of help, calls, hugs, emails - we cherish each and every one and each and every one of you. The outpouring of support for Rand has been overwhelming and so very deeply appreciated.

After the flying high ending to yesterday, today was a different story. Rand is exhausted from the events of the last few days. He was lethargic and unresponsive today, slept hard at times and late this afternoon was transferred to Kaiser- Santa Teresa. He is in a regular room near a nurse's station where he will stay until he is re-stabilized and evaluated medically, physically and mentally. The two immediate concerns are his inability to swallow and congestion in his lungs. He has a feeding tube along with an IV, etc.

Rand will stay at the hospital for several days and then be transferred to a skilled nursing facility where he will receive some PT, OT and speech therapy daily. He will be there until he is strong enough to tolerate and really participate in PT, OT and speech therapy for several hours a day.

I was looking at this as one day at a time. Now I am seeing it as one hour at a time. Because of this, I'm asking that he have no visitors until he is securely tucked into a nursing home and completely stabilized once again. I will let you know where he is when everything is settled - it could be into next week. In the meantime, hold him tight in your thoughts and prayers. He is in the best of hands - God's and the doctor's.

Love,
Connie



January 31, 2006


Day 4 for Rand was very similar to Day 3. There were some highlights and low lights. A highlight is that his blood pressure is coming back into the normal range. When he arrived at Kaiser last night it was 196/85, this afternoon it was 141/78. He was sleepy and lethargic all day and was not able to respond to the therapists, until the Head and Neck specialist gave him some ice chips so she could evaluate his swallow. He CHEWED the ice!! YEA for Rand!! The chewing reflex/info is still there. He still cannot swallow properly and is having serious difficulty dealing with saliva. He has a feeding tube as he cannot have anything by mouth. He did sleep a bit between coughing episodes and finally had a good stretch of sleep this afternoon. By the time I was leaving this evening, he was awake, his eyes were clearer, and he was more alert than he has been for two days. He will be having another battery of tests (MRI, CT scan, x-rays, ultra-sound, etc.) plus OT, PT and speech therapy starting this evening and continuing tomorrow morning, so he will probably be tired again on Wednesday. Every hour brings new challenges and new whoopies. But remember - Rand's email isn't VIKING 1957 for nothing! He's tough as nails, persistent as a bull dog, has the patience of Job, is the sweetheart of the western world and he will make it through this better than anyone else in the same situation.

Your thoughts, prayers, calls, emails are so, so important to both of us. Thank you.

Love,
Connie





February 1, 2006

Day 5. This morning Rand was sedated so he could endure and stay still for another MRI that requires 45 minutes of complete stillness. The sedation allowed him to be relatively still for 30 minutes, so they got a pretty good reading. The rest of the day he was in a deep sleep, unresponsive to me, to voices or other stimulation. About 3:30 p.m. he opened his eyes but did not focus or respond in any way. The Head/Neck specialist worked with him for a short time, trying to evaluate his swallowing ability but had to stop because he could not respond to her commands. He has a 10-12 second delay in swallowing, it is shallow and he does not complete the process, hence the congestion, coughing and terrible breathing problems during those episodes. He is receiving antibiotics to ward off pneumonia, but it is still a concern.

Today the doctors walked me through the results of the MRI. I knew that the stroke was defined as "massive" but I didn't completely comprehend until I saw Rand's brain in minute layer after layer. It is devastating. The doctors said that 2/3 of his left brain tissue is dead. They said if a person has a stroke of this magnitude, it is best to have it on the right side, not the left as Rand did, as the recovery possibilities are better.

Tomorrow, Thursday, they will do an MRA which will look at the blood vessels in the brain. Once again, he will be sedated for most of the day. On Friday, they expect to move him to a skilled nursing facility, where he will receive PT, OT and speech therapy up to 90 minutes a day. He is not strong enough to go to a rehab hospital where he must be able to tolerate 3-4 hours of aggressive therapy and participate in the same, every day. That day will come, dear friends, it will come, but not right now. Vascular surgery may also be in the future, but not right now.

Your cards, calls, email continue to support and encourage us. I do not know what we would do without your prayers and dear, dear friendship. Your offers of help will be needed some time in the future but right now please hold our dearest Rand so close to your hearts.

Thank you,
Love,
Connie


February 2, 2006

Day 6 was filled with "woes and whoopies," but more whoopies than woes. When I arrived at the hospital this morning, Rand was sitting up in a chair. He had a strap to keep him safe, but he sat there for 90 minutes! What a thrill, what encouragement, what a tough Norwegian! While he was sitting there, I used a space-age shampoo on his hair and in the process, left a clean folded towel on the bed. The towel was near his left hand and pretty soon he had unfolded the towel and spent a long time fussing with it until it was perfectly laid out on the bed. He aligned it evenly with the edge of the mattress, flipped it around and smoothed it until it was perfectly flat, symmetrical, wrinkle-free, all with his left hand. That took planning, vision, coordination, understanding just what he wanted and not stopping the task until it was complete to his satisfaction. Am I reading things into this event? I hope not and I don't think so. I'm hanging on each little positive thing and I think this was a BIG whoopie!! The chair and towel time consumed lots of energy, concentration and took the starch out of his sails. He was sleepy and quiet the rest of the day.

When his eyes were open he had a hard time focusing and tracking. He frequently looked at the ceiling. Two friends stopped by about noon and he recognized them and responded to them. Later this afternoon I said, "Rand, do you know that I love you?" and he said "I do." I cried. The Head/Neck therapist worked with him, using ice chips, a bit of water and thickened juice. His swallow is still delayed and fluids continue to collect in his throat, but the traumatic coughing/choking episodes are less frequent - less than a dozen an hour compared to one every few minutes. He is receiving antibiotics and that might be helping.

He was not accepted at the Rehab Hospital in Vallejo as he is not strong enough to endure the rigorous routine. Tomorrow or this weekend he will be transfered to a skilled nursing facility for the near future. I have requested a placement in Los Gatos, but will have to accept which ever home in the area has a rehab bed for a man. After he regains strength, he will be referred to Vallejo rehab again and hopefully be ready and able to participate. The doctor also ordered an evaluation by a vascular surgeon in the coming weeks.

Your thoughtful cards, emails and calls continue to help keep us moving forward and are deeply appreciated. So many of you have asked about my well-being which I also appreciate. I'm living off the "fat of the land" (and there's plenty of that for awhile!!) and am doing OK. I'm not able to keep much food in me but soda crackers, yogurt, apples, toast and cheese washed down with water or OJ suffice. I'm sleeping 7-8 hours a night with a little help from chemistry, am able to relax with some wine in the evening. There are not enough hours in the day to get everything done that I need to do. I know that at some point there will be too many hours in the day with nothing to do and I am dreading that time. I have not broken down yet, that time will come also. A person who knows me well said that when I get everything organized to my satisfaction and all my ducks in a row, then I will fall apart. I think she's right.

Tomorrow is another day with more whoopies and fewer woes. I hope that all days ahead are like that.


February 3

On Day 7 the roller-coaster continued as did the woes and whoopies. Rand sat up for 90+ minutes again this morning. He had a strap across his chest to keep him safe, but his head was up, looking around and his left hand held his right hand/arm in place on his lap. Earlier, the PT had him standing up! It was only for a few minutes but he had been trying to get him to stand all week and today Rand was able to do it - whoopie!
His color is good, he was more alert and seemed to focus more than yesterday. His responses to questions are now accurate which is a big whoopie!

During the last few days has Rand kept pulling the feeding tube out through his nose. It has to be so, so irritating to have that thing in his nose and throat along with the oxygen tubes, compounded by the coughing and congestion. This morning after they reinserted it again, they took an x-ray to be sure it was positioned properly in his stomach, they discovered that he has a partially collapsed lung on the right side. How and when it happened is unknown, but the constant inserting and pulling out of the feeding tube, aspirating liquids and bacteria into his lungs, can't be of any help. The doctors inserted a tube into his chest to help the situation. Later this afternoon a doctor had a long talk with me about putting in a stomach plug as an alternative to the tube to his stomach via the nasal passage. He was wonderful, explained everything, drew pages of diagrams, we discussed the pros and cons, the risks, he answered my questions, gave me all the time I needed and I told him to go for it. The plug will probably be surgically inserted on Monday or Tuesday. That has to help his poor irritated throat over the long haul and the doctor assured me that it will be a long time until Rand will be able to take anything by mouth. His left hand/arm has been strapped to the bed with some wiggle room to keep him from pulling the tube out. There is no wiggle room now - his hand is strapped tight to the bed. How much does one person have to endure? It made me cry to see him trapped like that. The solace is that he is not aware of the situation and is not showing stress or frustration. The other piece is that it gives them a few more days to find a good nursing home placement for him. They know what I want for him and this extra time may make it happen.

Your wonderful, caring cards and emails keep flowing in. Thank you, thank you. I have not taken the cards to the hospital for a number of reasons but when Rand is settled in a nursing home for a few weeks, I'll plaster his room with them!

I've reread this electronic journal and I realize how I prattle on and on. I've given you more information than you want to know! Writing this every evening is therapy for me. It helps me put the days' events in perspective and organize my thoughts about what is coming up tomorrow. Do not hesitate to tell me to take your name off the daily email list, I will not be upset or offended if you would rather not receive these lengthy epistles. I can send you updates on Rand less frequently and summarize more succinctly. Please let me know.
Your love and support got us through the first week and tomorrow is the start of the second week of this journey. Thanks, dear friends.

Love,
Rand and Connie


February 4

It was one week ago this morning that Rand had the stroke. It seems like five years ago. He had a quiet day, some visitors whom he recognized, and when I left this evening, he had a slight fever. He is listening to a variety of music on the iPod each day and has an opinion on what he wants to hear - YEA, Rand, go, go, go!

It was good for both of us to have a couple of visitors today. It is stimulating for Rand to see fresh faces and excellent for me to hear other's perceptions of his condition. I do not see all the progress that others do as I am too close to him. The friends were pleased to see his good color, his ability to focus with some consistency and to respond appropriately. In all, they were pleased with his progress since earlier in the week. It gives me immeasurable hope to hear their encouraging words.

Last night he tore his feeding tube out again and it was replaced this morning for the sixth time. He will have the stomach plug surgically inserted sometime this week, when the chest tube is not an issue, the antibiotics do their job, the blood thinner meds are out of his system and he can tolerate another surgery. Sometime next week he will be transferred to a skilled nursing facility. I am pushing hard for it to be local - Los Gatos, Almaden area. I'll keep you posted.

Friends found the website below that describes left-hemisphere stroke consequences and what to expect. I appreciate its simplicity and concise information. It gives us all some good guidelines to follow when spending time with Rand in the future.

The cards, emails and letters keep coming and they are such a help and comfort, I can't tell you. Thank you good friends, again and again, for being there for Rand. He's The Man, The Coach, the good guy in the white hat and he's on his way back, slowly but surely. Thank you for supporting and hanging in there with both of us.

Love,
Connie
http://caregiver-information.com/Stroke/left_brain_stroke.htm


Day 9 was a BIG, FAT ALL AROUND WHOOPIE for Rand!! The improvement in just 14 hours was so, so encouraging. He has been moved to a "sitter room" across the hall in #334, bed 2, right next to a floor to ceiling window and sliding glass door which is open a smidge to bring in some fresh air. I'll admit that I raised a ruckus (hell) after he tore his feeding tube out for the sixth time and maybe to get rid of me, they gave him a 24 hour, round the clock rotation of staff "sitters." These people take turns sitting on the left side of his bed and are in charge of watching, monitoring, controlling his left arm and hand so he does not have to be restrained and will not pull out the feeding tube. What a major relief! When I am there, the sitter leaves. The instant I want to leave the room for even a minute, a sitter comes back. (Our friend Rick "sat" as a family member for awhile this morning!)

Anyway, Randbo had a day full of progress and promise. He focused, tracked, turned to the right without being prompted. Both eyes are the same size again and he didn't look at the ceiling. He recognized the couple of friends who came to visit and his face glowed when he heard his sister's voice on the phone. His responses were on target and he tried to help the nurses when they moved and turned him. Memories from the past have been coming in from high school and college friends and today he smiled at their thoughts and names. He had some facial expressions today for the first time - raised eyebrows, furrowed brows, his new crooked, cute little smile. He watched the Super Bowl with some interest. After awhile I asked if he would rather listen to some music and he indicated "No." Then I asked if he wanted to continue watching the football game and he furrowed his brow and said, "Of course!" I about whooped with joy at his response to my dumb question! Those were the only clear words he spoke today, but he valiantly tried to communicate, to form words that just couldn't come out intelligibly yet.

His lung x-ray this morning shows good, steady improvement and his fever is down. He seems unaware of the tube in his right chest area. Sometime the next few days, the surgeons will implant a stomach plug, the hated feeding tube will be removed and then he can be moved to a rehab nursing facility. That timeline is unknown as I write this epistle. My big hope is that these extra few days have given the staff the needed time to find the perfect spot for the next phase of this journey.

Today it felt as though the hundreds of cards, emails, phone calls, visits, filled with prayers, encouraging thoughts and words, good vibes, silent encouragement, all came together for Rand. I do not want to give the impression that he is out of the woods, far from it, but he has come so far so fast in the last 24 hours that I am stunned. Some days in the last nine, he has taken one step forward and two backward, yesterday he was quiet, took a half a step forward and none back. Today he took a giant leap forward and did not go back. To have forward progress is such a joy to see. I know that there will be slips and falls ahead, but if he continues forward from today and never falls back into last week I will be so very happy. Thank you for your part in his progress, it is huge.

Your concern for both of us is amazing, overwhelming and deeply appreciated. We have the best friends in the whole wide world. WHOOPIE!

Love,
Connie



Day 10, February 6, 2006


Rand was all tuckered out today - he really had a big day yesterday and a bigger day medically today. He sat in a chair for two hours, stood briefly, was pushed to take a step and had muscle building work on his truck by the PT. No sooner was all that completed than the nurse removed the tube to his lung. That was followed by the usual poking and prodding by the doctors and nurses, interruptions, visitors, the removal of the catheter into his lung by yet another doctor, and the afternoon was topped off by surgery to insert a stomach plug for feeding. Add a sedative and numbing medicine for the surgery and - WHEW - most of us would be exhausted after a day like that! The whoopies for today include the right lung re-inflating, the removal of the hated feeding tube in his nose/throat, little if any coughing. Depending on the x-ray of his lungs tomorrow, the go ahead from the surgeon and his over-all stability, he could be moved to a skilled nursing facility tomorrow, Wednesday for sure. We're all anxious for Rand to get out of the hospital and on to the next step. I think the doctors and nurses will be especially happy to get me out of their hair as I am over-protective, over-anxious, hovering, badgering them with questions, updates, what-ifs and what's-nexts. Everyone at the hospital has been wonderful, patient and caring for Rand and tolerant of me and I appreciate it.

Rand was very aware that the miserable nasal feeding tube was gone and he was so happy. His left arm is no longer restrained and he does not need a "sitter" around the clock. The staff will be checking on him several times an hour through the night to make sure that he doesn't try to pull the stomach plug out. I tucked him in securely before I left and I think he is safe and sound - I don't think he will try to get at his abdominal area.

Again, dear friends, thank you for all of your help, support, offers of assistance, comfort and caring for both of us. Right now, I think we are heading in the right direction, making progress and there is a small light at the end of the long tunnel ahead. I will need your offers of time and help in the near future and will let you know when that time comes - it could be as soon as next week.
Keep those cards and letters/emails coming in - each one of you is precious to us.

Love,
Connie



February 7, 2006

Day 11 dawned bright and sunny, with blue skies and warm temps, a wonderful spring day. I woke up feeling light and airy myself and couldn't figure out why. On my way to the hospital I got a call saying that Rand was going to be moved to the Los Gatos facility that I had been requesting. What a relief and what joy for Rand! The remaining tubes (most of them) were removed and early this afternoon he was taken by ambulance to his new temporary home. He was tired, confused and maybe frustrated by the new surroundings. I was not happy with his room placement as it is small and cramped, plus his room mate is a first class, loud, annoying jerk with a bad dye job! After a brief discussion with the nurse, Rand will be moved to a more spacious room over the weekend when another gentleman goes home. WHEW!

I reread yesterday's journal entry and want to clarify that the PT is working on Rand's TRUNK muscles, not his TRUCK! Uff da - dumb typo!

Rand will be assessed by the PT, OT and Speech therapists on Wednesday and rehab therapy will begin in earnest on Thursday. I'll be bringing in real clothes and shoes for him to wear, as well as some personal items. I'm requesting that visitors be kept to a minimum until Monday, 2/13, when Rand will have settled into a routine, will have had a chance to recognize the staff and I'll know his therapy schedule. I want him to rest, gain strength, get settled in yet another room and away from that cranky dye job person on the other side of the curtain before he has many visitors. I expect that he will be very tired from daily therapy, also. My cell phone number is (408) 460-0098, home number is (408) 268-0374. Please call or email me before visiting in the near future so I can be the gate-keeper, assuring that he won't have a cast of thousands on any given day. Currently, there is no room for flowers or plants in his "room." That may come later. I'll email his address and room number as soon as all the dust settles.

Medically, he is stable and healthy. His temp is normal, his blood pressure is enviable and his right lung re-inflated and is going strong. He will be fed via the stomach plug during the night so he doesn't have to deal with tubes during the day. He has lost weight - about 7 to 10 pounds but has good color and both eyes seem to be focusing on people and objects. His vocabulary still consists of four words/sounds (uh-huh; uh, uh; OK and Yep.) His responses are mostly accurate, but he has no sense of time and recent events. He tries to form words and to communicate, but that piece is not working right now.

As many of you know, Rand has a 20 foot tall flag pole in the front of our house and he regularly flies a variety of flags. In January he hoisted a whirly-gig thing that he didn't particularly like, hoping that a winter storm would put it out of commission! It was still hanging there today and I decided that it didn't reflect the mood that it should. In going through his dozens of flags, I came across a rainbow wind sock and I decided that it needed to fly. After every storm there is a rainbow and Rand has come through a major storm so he needed to have a personal rainbow flying in his honor. A photograph taken today is below.

Each day there is a teeny, tiny bit of progress and I hang on to each piece. Over and over again we thank you for your concern, love and support - all of it is working!

Love,
Connie



February 8

Day 12 was as beautiful and eventful as yesterday. Rand was assessed by the OT, PT and speech therapists this morning in preparation for the start of therapy tomorrow/Thursday. They learned what was already known, had him in a wheel chair for awhile and standing a bit. This afternoon the speech therapist surprised the daylights out of me when she had Rand drinking water from a cup!! He swallowed just like you and I would, no delays, no choking, no aspirating!! WOW! He also chewed ice chips and swallowed the liquid appropriately. She said that as soon as she is sure that he can do that consistently, that the swallowing mechanism is solid, strong and reliable, he'll get other liquids. What a giant leap forward!! Talk about cheering from the home team, applause, kisses and hugs all around! GO, RAND, GO!

Tomorrow he will be dressed in real clothes for the first time - sweat pants, sweat shirt and tennies, ready for therapy.

The doctor told me today that she wants his visitations limited to two per day, once in the morning and once in the afternoon. She wants him to rest and sleep when he is not in therapy and he will be very tired after the daily workouts. I know that so many of you want to go and see him, but, please, email or call me with the times you are available in the next few days so I can run interference for him and act as the gate-keeper. I'll keep a schedule of who is going to visit when, so Rand can be protected and still see his friends. Please don't plan to stay more than 15 minutes or so and if you have a cold, fever or anything else that feels like a bug, please wait until you are healthy before visiting.

Because of his situation, please don't discuss eating, restaurants, drinking or bring bottled water, etc, with you. He doesn't need those reminders right now. Talk to him in short sentences and ask yes/no questions. He can respond to most of those. Please talk to him and not about him and remember that he has all of his memory, has all the information now that he did two weeks ago, he just isn't able to process and respond at this time. He's still our wonderful Rand just waiting to bust out all over this spring!

As Rand's schedule is changing, so is mine. I no longer need to live at the hospital and right now, I'm kind of in the way of his rehab. I will spend time with him each day, maybe 2 or 3 times a day for shorter periods. I'd like to be there when visitors come because he becomes confused when he sees so many faces, one after the other. Maybe my role is to act like an Ed McMahon - "Hereeeeeeeeeee's Johnny! (Susie, all of you)" and ease the transition for him. He will have OT/PT every morning and Speech in the vicinity of noon-1:00, as the therapist wants to work with his swallowing therapy around meal time. At this time, it sounds like late mornings and mid to later afternoon will be the best times for visitors. Again, please call or email me when you'd like to visit. Thanks. He is at Vasona Creek Healthcare Center, 16412 Los Gatos Blvd., Los Gatos, CA 95032. He is on the second floor, room 221, to be moved to 207 this weekend - away from that nasty guy with the awful dye job! He does not have a phone.

His living space is small and there is no room for flowers or plants. The cards and letters will soon cover and brighten his walls.

After re-reading this, I sound like Attila the Hun - I don't mean to be, but Rand will get better and stronger faster and faster if he can rest, sleep and concentrate all his energy on therapy. Thanks so much for understanding.

Randbo had a red letter day and I'm so thrilled with his progress. Every day brings another miracle. I can't wait to see what tomorrow will bring! Thanks, good friends, your thoughts, prayers, vibes, and good wishes are paying off a thousand fold.

Love,
Connie


February 9, 2006

Who said that 13 is unlucky? Baloney! Day 13 was another day full of little miracles. Rand had a shower, his hair washed, was shaved and dressed this morning - first time in 13 days. He had good therapy workouts and sat upright in a wheelchair without restraints for five hours straight! This afternoon we went downstairs and out into the portico area, sat in the sun on/near some benches, examined the flowers (his are 100X nicer!) and took a little "walk" along the perimeter of the building. He was bewildered and a bit confused by all the changes in scenery, but I think he enjoyed the outing. Just think, 48 hours ago he was hooked up to every machine in sight and today he is holding his own and enjoying the outdoors. Prayers are answered and miracles abound!

Today I brought in a few of the many cards you have sent, showed them to him, read a couple aloud (to the disgust of the dye job on the other side of the curtain) and then did the old elementary teacher check: I handed him a card upside down and sideways to see if he knew what to do with it. Immediately he turned it right side up, opened it correctly and "read" it with his eyes, tracking perfectly for the appropriate amount of time. I gave him cards that opened from the right, from the bottom, one that didn't open at all, one that was odd shaped, and every single time he hit the nail on the head without a moment's hesitation. It is all still there inside his head - he knows, understands, can't comprehend or respond, but he knows. WHEEEEEE! Randbo rules!

Another amazing thing happened as we sat together commiserating about the state of humankind. His right leg is on a support at about a 45o angle from the wheel chair and the left leg is on the standard foot rest. He put his left foot on the floor like he was going to stand, reached over with his left hand, picked up his right leg and moved it off the support!! Suddenly, he is aware of his right side! I'm sure this is the result of therapy as he was trying to stand up and he knew what he had to do to accomplish that. I got a nurse to help ASAP and things (I) calmed down before disaster struck, but what a major step forward!

Before he went back to bed, exhausted from the day, I hugged him and told him how far he has come, how happy I was and that his progress made me cry. My tears came and he wiped them away. He knows. Rand knows.

I can't wait to see what tomorrow brings! Keep those good thoughts and prayers beaming his way. They are working miracles, dear friends.

Love,
Connie



February 10, 2006

Two weeks ago tonight Rand slept at home for the last time for awhile. I still have trouble comprehending what has happened in these two weeks. He has been on the brink, come back from the edge, rallied, hit potholes, soared, fallen, picked himself up and is coming back a little more each day. Friends who saw him today were amazed at how far he has come and how good he looks. I am astounded to think that a heart beat ago I was giving the "do not resusitate/no extreme measures" orders. Today he rolled himself down the corridor in his wheel chair alone and he started to relearn how to speak. WHOOOOOOPIE! Soon he'll be doing wheelies in the hallway!

Six mornings a week he has OT/PT for an hour. So far, the therapists say that it is too early to see much progress. They have him standing, supported by three of them, learning how to get up and down, in and out of bed and trying to take steps. This afternoon he reached over his body with his left hand, grabbed his right hand and put it on his tummy. He knows that his right side is there - not only his leg, but now his arm and hand also. WHOOPIE!

He has speech therapy for 45+ minutes later every morning. Today the therapist asked me if he had any interest in music. Well, those of you who have known Rand forever, know that he was involved in vocal music since he was a little kid - as a soloist and strong member of choirs, quartets, etc. all his life, through the early years of our marriage. In fact, he went to Concordia with the goal of becoming a choir director, majoring in music. The therapist started him on a technique called "Melodic Intonation Therapy" (MIT) which uses that musical talent, experience and training to relearn how to speak. The musical part is on the undamaged right side of the brain and can be used to connect with the speech on the left side. It is amazing - she sang and got Rand to join her in "Happy Birthday," "Row, Row, Row Your Boat" and he started pronouncing the words!! It was tough, not real clear, but he tried so hard, carried the tune perfectly but struggled with the pronunciation. We cheered and clapped at every phrase! Then she had him "sing-talk" simple sentences using two tones, high and low, while rocking his left hand/arm to the rhythm. Such things as "My name is Rand." "I am thirsty", etc. He got the idea, tried so hard and made progress! When she left, she told me to continue with the phrases she had written down. I did just that until Rand's strong left arm pulled my hand to the bed like an arm wrestler and he said. "No!" Enough was enough! Plus, if you've ever heard me sing . . . . After just a few minutes of working with him she told both of us that Rand will talk again - everything is working in his favor and he will talk again. Another miracle happened. The therapist said that singing repetitive children's songs with him is just what he needs. Today I threatened him with the songs, "Peter, Peter Penguin" and "Little Bunny Foo-Foo!" We'll see.

He was tired after his big day yesterday and the continuing therapy today. I think he will be glad to see Sunday roll around and to have a day of rest! He wasn't up to a trip outside today. Some friends stopped by and he smiled, reacted to their conversation, tried to join in and waved good bye. He was very interested in the new batch of cards I brought and in hearing the messages.

The days of woes and whoopies are gone - now there are only whoopies. WHOOPIE!! I know that there will be plateaus, when progress is slow and maybe stopped for a while, but nothing can dampen our spirits after what has happened in the last two weeks and especially in the last three days. It is truly a miracle and prayers are answered. Thank you for all of your prayers and support as our journey enters the third week.

Love,
Connie



February 11, 2006

The second week anniversary of Rand's stroke was quiet, lazy, even relaxing. He did not have therapy today and he was worn out from the last few days. He slept a lot, even through some visitors who came by. We sat outside for awhile in the beautiful warm sunshine, sang a bit, did some "sing-talk" and looked at a new batch of cards. By 4:00 he was ready to call it a day.

Tomorrow therapy starts again and on Monday he may finally be moved to a more spacious room next to a window that actually opens and looks out toward the Santa Cruz mountains. It is right across from the Nurse's station and is the bed I wanted for him in the first place - room 207. Keep your fingers crossed.

You know what? I'm pooped.

More tomorrow evening. Keep those good thoughts and prayers coming Rand's way!

Love,
Connie



February 12, 2006

Day 16 was much like Day 15 - relaxing, sleepy, low-key. Friends stopped by this morning and Rand and I spent about 90 minutes outside by the fountain and took a walk/wheel along Los Gatos Blvd. this afternoon. It is hard to tell how much interest these outings hold for him vs. how bewildering it all is. He does enjoy sitting in the sun near the fountain and I think the fresh air, warm sun, flowers and activity are good for him. We called his sister today and his face lit up when he heard her voice. He tried to talk, had so much to say, but it doesn't come out the way he wants and it is very frustrating to him. He has a good attitude about his inability to be understood and shrugs it off - then tries again and again. It will come, one of these days it will come. Every now and then there is a good solid word in his good solid voice, so I know it is there waiting to come out.

By about 3:00 he is ready to go back to bed, listen to music, talk a bit and rest. The nurses need to hook up his feeding tube by then anyway and I leave about 4:00. As of today, Rand is receiving the full 90 oz. of liquid nutrition per day - 1800 calories. Just five days ago he was receiving 30 oz. or 1/3 of that amount per day -no wonder he has lost so much weight! I would guess he has lost upwards of 15-20 pounds in two weeks. His end-of-the-day treats are small ice chunks, fed by spoon. You can imagine how thirsty he is and how good that tastes and feels. Now and again he can have some sips of water but all of that is best left to the nurses and therapists so he doesn't aspirate any of it.

Tomorrow he moves into a new room by the window. I've taken down the cards and photos in preparation for the move. I brought him Valentine balloons today but he doesn't really notice them. Even though his area will be bigger (and the jerk next door will be history), there isn't space for any flowers, plants, etc. But there is a more comfortable chair for visitors! Please let me know when you want to stop by.

Please keep your good thoughts, prayers and hopes aimed at Rand. I can't wait to see what the third week will bring - third time's the charm and he's charmed and a charmer!

Love,
Connie



February 13, 2006

Day 17 was one of frustration, some woes and whoopies and some tears for both Rand and me. Rand was alert today, a marked improvement over his quiet weekend. That's a whoopie. He is showing frustration at not being able to communicate and is getting depressed by that and his whole situation. That is a woe, but the whoopie side is that now we know that he understands some of the world around him, which has been unknown to this point. Today we received an email from a faithful high school friend of Rand's, describing so well what Rand must be going through. I copied a piece of it below:

"Dear Rand and Connie:
This afternoon I uttered a short prayer in a most unusual place...an electronics super store. Why ...you ask. Well, I had taken in a failed flat screen monitor...that had failed...FAILED... and as a result I COULD NOT COMMUNICATE...
My thoughts went from questioning: what went wrong; to, do I have a warranty and/or did I buy the extended warranty and why must I wait ... what, five minutes to even get recognized...to why are those jug-heads... in front of me...the nerve of these people ...NOT letting ME Tell MY story....I am probably the most important person in here today...or even this week--for that matter.
You know, then I did my usual flight-of-ideas and prioritized "why" I need the computer today... and it all came full circle that my friend Rand and his bride Miss Connie have been nearly totally deprived of communication for some two weeks, tactile certainly, but not the day to day essential exchanges that just can't get it done without the spoken word. My internal voice yelled SHUT UP, and I hit the really grateful button and directed my energy to you as I do now. I pray that you get better-- real soon and communicate in a 360o world that you enjoyed before."

All of us need to hit our "really grateful button" every day. Rand and I are so lucky to have such a stupendous, strong, caring group of friends who go way, way back with us. Thanks, Bob.

Do you remember when I said that I took down the dull, boring twirly-thingy from Rand's flag pole and hoisted a rainbow windsock in honor of his progress? Well, today a "gremlin" decorated our garage door and yard with rainbows: rainbow ribbons, a wind catcher, rainbow foil streamers and a huge painted rainbow sign signed by many members of the Fisher Middle School staff!! What a joy to see! I took pictures and brought them to Rand. He had a big smile when he saw them. What a perfect way to celebrate his progress! The sign was getting a bit damp this evening so I took it down, rolled it up for safe keeping and will put it back up when he comes home. Thank you, good friends!

This afternoon a friend told me that Rand had something for me - lo and behold, he had a Valentine and a box of candy for me in his hand!! Our dear friend had conspired with Rand to produce this gift - I don't know which of us cried harder! Thank you, our dear friend. It was a Valentine gift more precious than any before.

There were a couple of woes that I won't go into as they will heal and/or pass with time. Another big whoopie is that he was finally moved to room 207 - away from the annoying Mr. Clariol and next to a window that actually opens! Friends helped decorate his room with cards until we ran out of space. There are at least 50 more cards to hang somewhere!

Tomorrow I meet with the head nurse, the manager, therapists and social worker to review Rand's progress and situation. I have so many questions - more than they have answers, I'm sure. A full report tomorrow evening.

Happy Valentine's Day, dear friends, from both of us.

Love.
Rand and Connie



February 14, 2006

Today, two Valentine's came to us - Rand started eating again and he wrote his name with his left hand! The therapist scooped up a dish each of pudding, sliced peaches and applesauce and Rand fed himself and washed it all down with apple juice! I watched in amazement. She took his order for pizza and ice cream on Friday! His swallowing is strong with no delays, no coughing and no aspirating. Then she put a pencil in his left hand and told him to write his name and he did it - R A N D in caps like any of us right-handers would do using our left hand! Go, R A N D, Go! Two weeks ago I said that I would be totally happy if he ever got to the point of being able to eat again. Here we are!!

The physical part of his therapy is not progressing as fast. In fact it is very slow. The therapists said that they felt a slight muscle reflex in his right thigh today for the first time. He is unable to help with sitting up, scooting to the edge of the bed, moving to a wheel chair, etc., so he is dead weight. He remains unaware of his right side, including vision to that side. Not that he is blind on that side - he is just not aware of things, including his body, that are on the right side. He can point to letters of the alphabet that are on the left side of a paper with 100% accuracy, but can not see, find or point to any letters that are on the right side of the page.

I set up a little "beauty salon" outside in the sunshine today: I washed his hair with the super-duper waterless shampoo, shaved him, put on after-shave (foo-foo water) and gave him a mini-manicure. He looked very spiffy for all the company that followed. The weather will be changing in the next day or two and we will be back to the reality of northern Calif. winter, so our days in the sun will be few and far between for awhile. But he has a nice large window with, from his vantage point, a nice view and that helps.

I met with the powers that be at the rehab center today and started some of the spade work that needs to be addressed in upcoming weeks and months. It is daunting to say the least. There is no prognosis, no guesstimates, no what-ifs or what-nexts, just the reality of what will eventually arrive on our doorstep. A friend was with me at the meeting which was a major help as I don't always hear straight - I project my thoughts, concerns into what they are saying and Sharon was my sounding board afterward. I'll deal with all of this as it comes, cross those bridges as necessary and try to make good choices about which battles to fight.

Happy Valentine's Day, dear friends. It was a spectacular day for Rand - I hope your day was too!

Love,
Connie



February 15, 2006

Today, a high school friend of Rand's likened Rand's progress to the rise and fall of the Dow Jones Average - a perfect analogy. Thanks, John! Today, there were highs and lows and it was a frustrating day for Rand. The highlight was that he ate lunch - meatballs, spinach and cake! With a bit of help he fed himself and enjoyed it. The doctor is pushing his real food consumption and will start decreasing the fluid intake via the tube as his food intake increases. Right now he is getting fed via the tube for 20 hours a day. Some where in the future she wants that to go down to 9 hours a day. In order for that to happen, he needs to be eating three square meals a day so he can keep some weight on and have the energy needed for therapy. Go, Randbo!

The down side is that Rand is starting to realize the "prison" he is in. He is very frustrated by his inability to talk, to make his needs known, to communicate on any level. The doctor said that he gets so frustrated in the evening that he refuses to try to talk or communicate in any way, which is not good. The doctor has started him on an anti-depressant to help him through this period. The small silver lining is that he is aware, is understanding and comprehending his situation. Today he was cranky, frustrated, agitated, unsettled and unwilling to do anything, even go outside. Rand is never like that so it is very hard to see him so upset.

Several people have asked about the possibility of Rand using a computer to communicate. The doctor suggested that I try, so on Friday I will bring in our lap top with the font set to large size print and he can start typing letters and/or words. It would be wonderful if it will help train the right side of his brain to take over some basic communication needs. We know he can recognize letters, but we don't know about words, pictures, phrases, numbers, etc. This will be a trial run and I'll let you know how it goes.

On Sunday his barber is coming over to give him a hair cut! How wonderful can you get?? I was so afraid that he would wind up with a "bowl cut" from the "stylist-in-residence!" YIKES! Rand will feel and look so much better and I'm thrilled!

The doctor also lifted the restrictions on visitors today as she feels he is strong enough and reacts so positively to friends who stop by. Do let me know when you plan to visit, as he still can't handle a cast of thousands! I put a bottle of Purel on his tray table - please use it generously! Thanks.

Some of you have said that your email address has "fallen off" my list and your daily update is floating out in cyberspace somewhere. I don't know what happens - maybe our computer is on overload. Anyway, it is not an intentional slight and please let me know if you "fall off" the list - I'll put you back on again.

Well, good friends, the rollercoaster continues, but this time we're traveling in a different direction than two weeks ago. Each twist and turn makes me a bit queezey but I know that it will straighten out again - just like the Dow!

Keep Rand in your prayers and thoughts. He needs to be held tight and reassured, supported and cared for. Tomorrow will be a better day.

Love,
Connie



February 16, 2006

Day 19 was another busy day. Thanks to good friends, I was able to spend a good portion of the day doing things I just had to do. When I went to see Rand later this afternoon, he had several shades of lipstick on his face - he had a very good time while I was gone!

He also had lunch and ate about half of it - chicken, "Green and Wax Bean Medley," (Uff da!) but he turned down the potates and "California Fruit Cocktail." Hmmmmmmmmmmm - go figure.

Two huge, tear-jerking whoopies today were the arrival of pastel portraits of Rand and me done by his very talented sister, Karen. Rand and I had talked about having our picture taken as we haven't done that since we were married, but we never got around to it. Karen did these from photos she took when she and Kaj were at our house a few years ago. They are wonderful and so touching, I burbled like a fountain. The other biggie was a paper I found while straightening Rand's tray table this afternoon. It is a piece of white paper with "Connie (heart symbol) Rand" written on it in pencil - obviously left-handed. I ran to the therapist with it and she said that Rand wrote it today with a little help from her. That was too much - it is proudly displayed and will soon be framed. Wow. I don't know what to say to all the good things that happened today. Happy tears flowed freely.

Since last July, I have been a member of the Santa Clara County Civil Grand Jury. I resigned 19 days ago. Today I was able to go back to the office and clear out my file drawer, bring in tons of papers and documents to be shredded, distribute notes from cases, etc. and see the other jurors who have come to mean so much to me. It was therapy just to be there again, to laugh and catch up on their lives. It felt good to be part of the "real world" again, but it was also a guilt producer as I could run away for a couple of hours and Rand can't.

Rand so enjoys seeing all of his visitors. I have left a "Rand's Guests" sign-in sheet on his tray table and would really appreciate it if you would sign your name when you arrive. It helps me to talk to him about who came to see him as he frequently forgets. There is also a sheet titled "Rand's Words." If he says a or some words clearly, please jot them down. The speech therapist wants to incorporate those spontaneous words into his therapy. Thanks - it is another way to help Randbo.

Tomorrow is computer day! I'm anxious to see his reaction and how he does with it. His spirits were much better today than yesterday and I hope he has a good attitude again tomorrow.

Keep those prayers and good thoughts beaming his way.

Love,
Connie



February 18, 2006

Day 20
9:05 a.m. In about 40 minutes, it will be three weeks since Rand had his stroke. What amazing and miraculous things have happened since then. Rand has come so far, doing things now I only hoped would come about sometime in the future. I can't even imagine where he will be and what he will be doing three weeks from now.

Rand is eating lunch every day and his swallowing is consistent and strong. He is still being fed by tube for 20 hours a day with a reprieve from 10:00 a.m. to about 2:00 p.m. During that time he has OT and PT, lunch, maybe a jaunt outside, visitors while he is sitting in the wheel chair. Visitors are always welcome, especially in the afternoon now that the doctor has lifted the restrictions. By 4:00 p.m. he is sound asleep. Starting Monday, he will also eat breakfast. If that goes well for a couple of days, the tube feeding will be reduced to 12 hours a day. That will give him more of an appetite and hope that he will eat more by mouth. Later in the week, if all goes well, he will start being fed dinner and the tube feeding will be reduced to 9 hours a day. It will probably stay at that level for sometime as he needs all the nutrition and energy he can get to put into therapy.

Yesterday I brought in our laptop with the font set to large print. Rand smiled in recognition when he saw it but he had no idea what to do with it. He can not point so I cupped his hand in mine, except the index finger, and together we typed "Rand, Connie" and a few phrases. He smiled when he saw our names but the therapist said that his vision is so poor that he can't see the letters on the keys. Even if he could, the portion of his brain that organizes thought, speech, print, the world around him, is so badly damaged that he can't make sense out of any of it. We'll try again another time.

A couple of funnies happened this week. Rand was moved to room #207 last Monday, away from Mr. Clariol, and next to a fellow that is very quiet - covered with tatoos, but very quiet. The other day Mr. Tattoo started complaining to everyone in sight that he couldn't find his glasses. Nurses, aides, family, everyone searched everywhere for his glasses. Then the speech therapist noticed that Rand was "watching" the olympics wearing Mr. T's glasses! One of the staff had put the wrong ones on Rand and he couldn't tell the difference. Uff da. The other dumb thing that happened started on Monday. We had unseasonably warm weather, near 80, for most of the week and I needed to get the irrigation system going to water the lawn, hill, flower beds, pots, etc. I set the control system it to "Run." Nothing happened. I spent a couple of frustrating hours reprogramming it with no luck. Then I called our neighbor the engineer who knows all about this stuff and he came over to try. He spent another couple of hours fiddling with it, the electrical connections, valves, etc. before giving up. Then I called Rand's co-worker at Ace Hardware who also has a landscape business on the side. He came out, spent a couple more hours with the dumb thing, declared that the timer/clock was kaput and offered to order a new one for me. I agreed. Then I called the landscaper who had installed it in the first place. He came out yesterday morning and plugged it in!! Worked like a charm! Uff da.

Sorry for the delay in writing this update. Yesterday I had a nasty case of food poisoning from either a sandwich or else I got ahold of a bad piece of lutefisk! Either way, I was sick, sick, sick. I don't think the stress of the last three weeks helped either. All is well today.

Now it is exactly 9:40 a.m. - three weeks to the minute. I can't wait to see how Rand is today. It is chilly outside but we might have a chance to sit in the sun for awhile, sing a little bit, some friends will stop by, and we'll all be together. Keep Rand in your thoughts and prayers.

Love,
Connie


Day 20, part II

Just a quick up date from the home front. Rand had a relaxing day with several friends stopping by. He was perky and started several sentences perfectly that then trailed off. We read another batch of cards together and he looked at each one carefully, smiled when I told him who they were from and I hung them on the walls. He has so many cards that I have to rotate them, taking bunches home as new ones arrive. I'll plaster the house with them when he comes home!

A friend told me today that I looked at peace. I hadn't realized it, but I think I am. We are settling into a routine that is comfortable, my anxiety level is lower, I'm not as hovering and compulsive as I was about Rand's care and well-being. I always used to iron our sheets and pillowcases with lavender water, but the last three weeks that has gone by the wayside. Tonight I ironed them again and it will be good to go to sleep with that normalcy once more. Rand's wonderful barber is coming over tomorrow to give him a hair cut so he will be all spiffed up for his birthday next Friday! The gardening service was here today and went way above and beyond by cleaning the yard from stem to stern, fertilizing, transplanting a tree, fixing the entryway fountain. They always admired the way Rand kept our yard, flowers, trees and bushes, so they are determined to do the same for him now. I am eternally grateful to everyone - I never dreamed we would have so much caring poured our way.

Each day is a new adventure. We'll see what tomorrow brings. Keep Rand tight in your thoughts.

Love,
Connie



February 20, 2006

Day 22
The highlight of today was that I was able to sit in on Rand's OT/PT session this afternoon. Usually that is scheduled for the morning but today was unusual. It was so interesting to watch both skilled, agile, flexible young therapists support Rand, hold his limbs, muscles, body in certain ways that allowed him to stand, straighten up, to use his paralyzed side and try to push against objects and themselves. After an hour he was so tired. To my untrained eye I saw little progress, but they can feel a twinge of muscle reaction in his right thigh. They said that the leg comes back first, followed by the arm. Tomorrow they'll do it all over again.

Rand had breakfast this morning for the first time and it did not go as well has hoped. He had a hard time dealing with and swallowing the eggs, so his breakfast will be pureed for awhile. He ate over half of his lunch which is the goal. If he can do the same or more tomorrow, the doctor will consider reducing the amount he is fed by tube later in the week.

He had several friends stop by today, we sat outside for a bit and he tried to talk again and again. He has so much to say, I can't wait until I can understand it all.

Tomorrow/Tuesday, I meet with the doctor, supervising nurse, head of therapy, etc. to hear their assessment of Rand's progress and to ask a bazillion questions. A friend will be with me as another set of eyes, ears, questions and to offer her perspective. I need guidelines, parameters, prospects, past experience from all of them. I'm feeling that I have no anchors right now and I'm too practical and Norwegian Lutheran to leave it all to faith! God helps those who help themselves, etc. Once I know the choices and have some notion of what lies ahead, I think I will make the right choices and decisions for Rand. I hope that answers will be coming from many sources.

Thank you for your prayers again and again. Tonight I'm feeling in need of guidance, too, in order to deal with what lies ahead.

Love,
Connie



February 22, 2006
Day 23

Rand had a good day today - he was alert, funny, cute and responsive. Several friends dropped by, he was delighted to see them. He didn't have much of a breakfast as he wasn't hungry after 20 hours on the feeding tube - no surprise, but he did eat an acceptable amount at lunch. He mostly fed himself, wiped his mouth with a napkin and was pleased with his efforts, but not with the taste of the "chili!"

The meeting with the staff this afternoon was so helpful. A good friend sat in on the meeting with me, took notes, asked clarifying questions and we debriefed afterwards. The bottom line is that Rand will not be coming home in the near future. He is making great progress medically and has wonderful days like today mentally, but his progress is very, very slow. His cognitive progress is uneven but on the up swing. When he arrived at rehab two weeks ago, he responded verbally to basic questions with 10% accuracy and today he responded with 80% accuracy. YEA, Rand! His ability to respond visually is very poor and he has made little progress in his ability to move himself and/or help with any of the work of moving his body. Some of the tough decisions about his care will be made next week - the prognosis for his ability to eat and maintain his weight without the feeding tube, how much progress he shows in physical therapy so he can stay in rehab vs. being moved to a less demanding, maintenance placement. Today I decided to keep him at Vasona Creek for the near future and I put him on the waiting list for their long-term care placement when he has to move out of the rehab unit. That could change - he might start making progress, and all bets will be off. I'm his biggest cheerleader, but I also have to be practical and realistic. I can not lift, move or handle him at home, even with live-in help 24/7 which is what he must have. Rand needs all the help, care and support possible and he will be safe and make the most progress at Vasona Creek in the weeks ahead. He will be continually reassessed and his program adjusted to fit his needs as they change. These are such heavy decisions, so difficult when Rand says he wants to come home, when I want him home, but our wishes are not an option. The rehab hospital in Vallejo is still a possibility in the future when he is ready, but not now.

My sister arrives tomorrow and I can't wait for her to get here! It will be so good for Rand and me to have her here for a few days, plus she gets a break from the cold Minnesota weather. I'll be back with "Rand's Progress" epistles after she leaves on Sunday. In the meantime, keep Rand close to your hearts, prayers and thoughts. Remember how precious all of you are to us.

Love,
Connie


February 26, 2006
Day 28

Another Northern California storm is rolling in as I write this. It sounds like we're in for a week of heavy rain, winds, generally nasty weather. But, there will be another rainbow or two following each wave of the storm and that's always good and reassuring.

My sister, Annie, arrived from Minnesota last Wednesday and left this afternoon. I was so happy to have her here and to listen to her reactions to and about Rand. She was fearful about seeing him as she expected the worst. She was amazed to walk into his room and find RAND lying in bed! She was so surprised to see that he looks very much the same, has good color, some of the usual facial and verbal expressions. He was delighted to see her and groaned "OH, NO!" loudly when she had to leave today. She was here for his birthday and all three of us had a good time together. The weather was glorious all week in honor of Annie's visit. She saw some old friends of ours that she knew and met many new ones. We spent a lot of time with Rand, did some damage to the local economy, saw "The Lion King." All in all, it was a win-win situation for all three of us.

This week, Rand started taking steps down the hall! He hangs onto the guide-rail with his left hand, two therapists support him, one in back and one on his side, while guiding his right leg and making him stand up straight. Together, the three of them "walk" about 20 feet down the hallway, rest and do it all over again. Then he goes into additional therapy to strengthen his right arm, hand and his trunk muscles - a good 90 minutes a day. He is now eating breakfast and lunch every day under supervision and will begin having dinner on Monday. He is doing well with feeding himself and eating 60-70% of the food at each meal. I wouldn't be surprised to hear that his feeding tube days are numbered! I meet with the department heads on Tuesday again to hear about his progress and next steps.

I took some photos of Rand with friends who visited for his birthday. I'll email some under separate cover. Thank you for all of the cards you sent in honor of his big day. We read every one of them and hung them on the walls of his room. He smiled in recognition when he heard each name. He chuckled at the stuffed squirrels that he received in honor of his squirrel trapping title of "Great White Hunter!" (For those of you who don't know, Rand has trapped 41 squirrels in our small backyard, then transported them to a county park about three miles away and released them. He named each and every one in honor of the events of the day in history!) He even received a pair of squirrel socks! He also enjoyed small cheese cakes with candles.

Thank you again for all of your prayers, good thoughts, cards, letters and phone calls. We don't know what we would do without the support of each and every one of you. We have the best friends in the whole world!

Love,
Connie



February 28
Day 30

It has been a dark and stormy couple of days and nights - heavy rain, high winds and a dark roiling sky. This afternoon as I was coming home from the hospital, driving down the hill into Almaden Valley, there was the most remarkable, bright, clear rainbow I've ever seen! And guess who's house seemed to be at the end of it?? I drove through the rainbow at the end of our street - it disappeared when I got to our house, but I believe it was here - it had to be because RandBOW had a rainbow week!

Every Tuesday I have scheduled a meeting with the heads of the departments that work with Rand - OT/PT therapy, speech, nursing, etc. and a friend attends with me to be a second set of eyes, ears and note taker. Last week the news was so discouraging and we left feeling very down. Today the news was soooooooo good! Rand has started making progress, especially in his physical movement, balance and most of all, in his ability to help move himself from point A to point B. Up until the last few days, Rand was unable to help with any movement of his body, but now he is able to provide up to 25% of the work it takes to move him. That is HUGE progress!! It means that now most of the time it only takes one trained person to move him, not two. He is now back on the "Vallejo Track" which seemed impossible last week. If his progress continues, he could be headed to that specialized rehab facility this spring sometime!

Rand is now eating three meals a day and the feeding tube has been cut way back. He will probably have it for the next few weeks as back up insurance as his meals move from puree to small pieces to more normal sized intake.

Whew! What a relief it is to get such good news and to know that Rand is working so hard, not giving up and is overcoming one hurdle after the other, including the frustration with not being able to communicate. Maybe his nickname should be Randbow, instead of Randbo!?!

Once again, your prayers, good thoughts and energy are pouring into Rand and making all the difference in the world. Thank you.

Love,
Connie