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
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