Greetings everyone! Here is an update from my Mom - it is a long one, but worth the read... a very thorough update on my Dad's progress as well as some comments about her own health. She truly is amazing and has shown us all her incredible strength... but I'm glad she's letting us all know her needs as well!

Hope everyone you are all well.

Love,
--
~Noelle~

Dear Family and Friends,

Today was the most exciting day in months! Bob took his first steps! He was at the parallel bars with the therapist close to him. Holding on to the parallel bars, he was able to lift his right foot a tiny bit and stepped forward about 1/2 inch, then his left foot and so on for about two feet! The look of joy on his face was so wonderful to see. I was right behind him with the wheelchair in case he fell. It was just fantastic! He was so tired after that session, took a real good nap before lunch; he is really progressing.

I need to address an issue some of you may not be aware of. Several people have mentioned or e-mailed that Bob had a stroke--he never did have a stroke. It was a very serious staph infection that killed him twice the first day he was in the hospital. He was resuscitated both times but for several days it was touch and go. He was also given too much of a "relaxing drug" that put him into the coma initially. Ten days into the hospital stay he died from a massive heart attack and was resuscitated again. He was in ICU most of the five weeks and one day when he kind of uttered the word "home". He was able to whisper a little and could shake his head up and down. I asked him if he wanted to go home and he shook his head "yes". His eyes were also partially open and would track me and others around the room. We felt that he could understand most of what we said and responded to questions with an up and down nod when appropriate.

He had x-rays and MRI's almost every morning and I was always told that there was no evidence of stroke or brain damage. At the beginning we were encouraged to pull life support, but as he began to open his eyes and track us, it would have been a tough decision. He did have blood clots in both upper arms.

He went in on October 13th and came home to Home Hospice on November 18th. I was told that he had two days to live, at most three. The first several days it was tough going but I could see a tiny bit of improvement most every day. On Thanksgiving morning I heard him say "Hon" out loud; that was a real step forward. His voice and speech have continued to improve to where he is almost normal.

The first three-four months were very exhausting for him--and me!---but the progression was so encouraging. He started moving fingers, toes, hands, feet, then arms and legs. Then one day he shrugged his entire torso a minuscule bit! Every new movement gave me (and others) the strength to continue caring for him.

Hospice provided wonderful aides and therapists and once they realized he really was going forward, they were even more helpful and encouraging. The "Exercise Brigade" (volunteers from church, the neighborhood, family and friends) were here almost every day to work with his arms and legs, then sitting up, getting into the hoyer and sling and a lot of encouragement to move and strengthen muscles as much as possible. The first week of April he was upgraded to Home Health Care and that new group of aides and therapists were very aggressive with body movement and building strength. On May 6th he went into the Acute Rehab Unit at the Auburn Regional Medical Center (in the Auburn hospital) and it has been uphill since then. He has been there three weeks and will probably be there another two or three weeks. He really pushes himself so there are times he is very exhausted, but the results are positive.

Tomorrow Hospice is coming to remove the bed and air mattress, oxygen pump and bottles, suction machine, feeding pump, hoyer and sling. It will be so good to have those reminders gone. Our game room will now be the master bedroom. Climbing stairs is probably a long way off, but he is so determined, who knows!

I spend several hours with him at the rehab unit every day and stay overnight two or three times a week. He is busy with two or three therapists every morning and early afternoon but the rest of the day and evenings really drag for him. I would like to stay there more but there is much to do to ready the house for him. There will be an inspection before they let him come home!!

Forgive me for not answering your cards, calls, e-mails, etc. I am so busy when I am not napping. My health needs to be better because when Bob comes home there will still be a lot of care needed. I don't expect anyone to remember that I still have Chronic Fatigue Syndrome and Meinier's Disease, both issues requiring a lot of sleep. Sleep is the only way I can ward them off. I have experienced a few of both these last months and have been at the edge of incidents most of the time. To keep them from going into full attacks, I require a lot of sleep and naps, which I am getting now.! When I am home, I am sleeping a lot. Several times when I have been sleeping someone rings the doorbell once or twice and by the time I groggily realize that the bell (or telephone) is not part of my dream and I grope for my robe and slippers and plod my way to the door---When I open the door, no one is there!! Please, please, if you find it is necessary to see me, wait for me to answer! It is so frustrating to go through this. I am so exhausted that I shake for several minutes when being awakened from a sound sleep. I would prefer to not have visitors at this time, but if it is an emergency, please wait until I answer. I need to be as well as possible when Bob gets home. You can probably reach me most readily at the Rehab Unit. I have a bed in Bob's room (very comfortable, by the way!) But don't call during "Jeopardy" or a Mariner's game!!!

Several people have asked how they can help me--at this time the very best way to help me is to visit, call or write Bob. He is at The Acute Rehab Unit
Room # 480, bed # 2
The Auburn Regional Medical Center
202 North Division Street
Plaza 1
Auburn, WA 98001-4908

With gas at such a premium and the extra drive to Auburn, I realize the visits to Bob are more difficult, but they would be much appreciated. Thank you to all of you who have been to see him, he enjoys visitors so much. He tells me about the visits several times.

Also several people have asked when they can visit us--as of right now any overnight company would be too exhausting. Probably no house guests for a year or so would be best depending on how Bob progresses and my stamina holds up. We need to get our
lives back to some sense of normalcy.

I must also mention all the wonderful food that was delivered to my doorstep for many months, Thank you Carol Nohavac, Karen Dare and Amy Klisky, for all the phone calls and organization, you took a lot of stress out of my life!

I think I have covered everything! If you are still reading this, thank you for everything!! I will continue with updates when the computer cooperates----

Priscilla

Below is the latest from my Mom. Happy Mother's Day!

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Dear everyone,

I know it has been over three months since I last wrote an update and I apologise to all of you who have e-mailed, called or wrote us asking about Bob. I am too tired at the end of the day to even think about writing, and when I have had some energy, the computer doesn't want to cooperate! Life for me has been one big foggy haze-----a twenty three out of twenty four hour schedule of things to do. The positive healing of Bob is what keeps me going-----

Since January Bob has progressed to full eating by mouth--- of moderately soft foods. He cannot eat apple peels, celery and other hard or crispy items. He also is still on tube feeding by the feeding pump or bolus---(Syringe). He has gone from eight cans of Glucerna to four daily and will probably be off those within two weeks. He feeds himself almost everything, a bit shaky at times; especially when he is tired. From that first spoon of applesauce to how he is eating now is nothing short of amazing.

About three months ago I saw him shrug his torso about an eighth of an inch all by himself---it was so exciting to see that part of him "waking up". Since then it has been a slow process, but every part of his body is getting stronger. Every little new movement means progress. His arms and legs are getting so strong and are really filling out. He can hold his head up almost all the time, the neck muscles are impressive. But, he still tires quite easily.

The Hospice people were very encouraging once they realized that he was going to be around a while. It took them a while to come to that conclusion and of course, then, they had to turn him over to Home Health Care. (Medicare reasons.) If I thought it was stressful and chaotic with Hospice, Home Health Care has proven to me what chaotic really is. Therapists, nurses, social workers, aides, our brigade of "exercise" folks, food providers---just a constant flow of people through the house. Everyone was so helpful--and so much appreciated---but I am about "people-ed" out!! One day recently we had thirteen people here in one day, plus many phone calls. A real revolving door!!

He had been in Home Health Care for five weeks when they came to the conclusion that he is ready for rehabilitation----so yesterday, (Tuesday, May 6th) he was admitted to The Acute Rehabilitation Center at the Auburn Regional Hospital. It is a newly remodeled area of the hospital and seems very well equipped. It has eight beds and as of right now, with Bob, only three are occupied. They hope to have him on the exercise bike and walking the parallel bars within three weeks!!!! To me that seems a stretch, but his determination is remarkable!

I have much more information, but Noelle suggested that I follow this with another update in a couple days. I am getting more sleep, so that is a possibility! Wednesday morning I woke up at 5:30 as usual and then I realized that I didn't have to get up, so I rolled over and slept another two+ hours, It felt so good, better than laying on a Hawaiian beach!

Bob would really like company in the afternoons and evenings. He told me he is lonely, he was getting used to all the people at home! I have been there every afternoon and evening, but I know he would like to see other people. If you are in the area, I know he would appreciate a visit. He is at Auburn Regional Medical Center (Hospital) in the Acute Rehabilitation Center on fourth floor. Take elevator "C" to the fourth floor--the nurse's station is on the left and his room is on the right--room # 480. There is a huge parking ramp on the same side of the street as the hospital. Visiting hours are from eight AM to eight PM---if he is in the middle of therapy please do not disturb him, but you can observe! More, later!

Thank you, everyone, for everything!

Priscilla

Dear everyone,

I know it has been over three months since I last wrote an update and I apologise to all of you who have e-mailed, called or wrote us asking about Bob. I am too tired at the end of the day to even think about writing, and when I have had some energy, the computer doesn't want to cooperate! Life for me has been one big foggy haze-----a twenty three out of twenty four hour schedule of things to do. The positive healing of Bob is what keeps me going-----

Since January Bob has progressed to full eating by mouth--- of moderately soft foods. He cannot eat apple peels, celery and other hard or crispy items. He also is still on tube feeding by the feeding pump or bolus---(Syringe). He has gone from eight cans of Glucerna to four daily and will probably be off those within two weeks. He feeds himself almost everything, a bit shaky at times; especially when he is tired. From that first spoon of applesauce to how he is eating now is nothing short of amazing.

About three months ago I saw him shrug his torso about an eighth of an inch all by himself---it was so exciting to see that part of him "waking up". Since then it has been a slow process, but every part of his body is getting stronger. Every little new movement means progress. His arms and legs are getting so strong and are really filling out. He can hold his head up almost all the time, the neck muscles are impressive. But, he still tires quite easily.

The Hospice people were very encouraging once they realized that he was going to be around a while. It took them a while to come to that conclusion and of course, then, they had to turn him over to Home Health Care. (Medicare reasons.) If I thought it was stressful and chaotic with Hospice, Home Health Care has proven to me what chaotic really is. Therapists, nurses, social workers, aides, our brigade of "exercise" folks, food providers---just a constant flow of people through the house. Everyone was so helpful--and so much appreciated---but I am about "people-ed" out!! One day recently we had thirteen people here in one day, plus many phone calls. A real revolving door!!

He had been in Home Health Care for five weeks when they came to the conclusion that he is ready for rehabilitation----so yesterday, (Tuesday, May 6th) he was admitted to The Acute Rehabilitation Center at the Auburn Regional Hospital. It is a newly remodeled area of the hospital and seems very well equipped. It has eight beds and as of right now, with Bob, only three are occupied. They hope to have him on the exercise bike and walking the parallel bars within three weeks!!!! To me that seems a stretch, but his determination is remarkable!

I have much more information, but Noelle suggested that I follow this with another update in a couple days. I am getting more sleep, so that is a possibility! Wednesday morning I woke up at 5:30 as usual and then I realized that I didn't have to get up, so I rolled over and slept another two+ hours, It felt so good, better than laying on a Hawaiian beach!

Bob would really like company. He told me he is lonely, he was getting used to all the people at home! I have been there every afternoon and evening, but I know he would like to see other people. If you are in the area, I know he would appreciate a visit. He is at Auburn Regional Medical Center (Hospital) in the Acute Rehabilitation Center on fourth floor. Take elevator "C" to the fourth floor--the nurse's station is on the left and his room is on the right--room # 480. There is a huge parking ramp on the same side of the street as the hospital. Visiting hours are from eight AM to eight PM---if he is in the middle of therapy please do not disturb him, but you can observe! More, later!

Thank you, everyone, for everything!

Priscilla

Dear All,

Bob just had his first outing in a wheelchair/van. We had a nice sunny (almost warm) day. He enjoyed it but is now napping after all the exitement. Will update soon.

Regards,
Priscilla

Happy New Year, Everyone!

Much has progressed since I last wrote an update. Bob is improving a little bit every day. He has sat in the wheelchair once (for about 15-20 minutes) and wants to again, but I need at least two able bodied men to help with the Hoyer (hoist) and sling before we can try again. Hopefully, this week.

He is able to feed himself a small cup of apple sauce with cinnamon, and yesterday and today he had a half cup of diced water melon. He is able to drink out of a light weight cup, so has water two or three times each day. He wants to eat real food (grown up food he says!). I plan to start him on bananas, custard and yams in the next couple days. If he tolerates those, we will try other items.

He has put on a little fat in the calf and shoulder areas. Thank goodness--it was hard looking at those bones---let alone hugging them!! I have been giving him a third cup of chicken broth and a tablespoon or two of beef broth with each feeding--mixing it in with the canned formula.

We work with his legs and arms a couple times a day, gently stretching and building some muscle. They are definitely improving---he has enough strength in his arms to help hold the side bars when we need to turn him and move his legs to facilitate turning, cleaning, etc.. Carlos, the occupational therapist, brought a "rubber band" yesterday for him to start stretching to build muscle in the shoulder and arm areas, he also had a "trapeze' installed over him so that he can build strength by reaching and holding on to it. So far, he is able to grab on to it and move his body a very tiny bit, -----but everything is progress.

His mental state is fine, I have not noticed any depression. Some irritation, because he wants to sit up and walk, and has a hard time realizing how debilitated he was. (And still is). We are filling him in on that a little bit at a time. He is cognitive about 85 % of the time. His mind will wander and be fuzzy when he is real tired ----or possibly hungry---or maybe low blood sugar might influence that. I try to monitor it all closely. His hearing is good. He speaks in full sentences and makes sense almost all the time, sometimes he has a hard time thinking of the right word, but then, so do I. He speaks out loud almost all the time and loves to talk on the telephone. (Very briefly). I think that gives him a feeling of control---he has been so vulnerable for so long.

I think I have covered most everything. We are so appreciative of all the good wishes, prayers, food, cards, gifts, flowers, trips to the store, visits, the carolers(!) and all the other things I am too tired to remember. I don't know how we would ever be able to even begin to repay any of this---I guess we will be "paying it forward" for a long time!! and happily!

Several of you have asked about me----other than sleep deprived, I am doing fine! If he wasn't improving, I am not sure how I would be feeling. I am finding that this is a 23 out of 24 hour job!! I have had a couple four hour sleep sessions, otherwise, two and three hours are about it at one time. He wakes me a couple or more times every night, sometimes he is cold (because he pulls or kicks his covers off!) or too hot, or to ask me questions about his situation or the future. Sometimes he doesn't make sense or can't understand why he can't walk (RIGHT NOW!!!) Sometime I am too tired to explain or talk much and he seems to understand. In fact, he will tell me to go back to sleep or he will say that he doesn't see how I do it all---sometime I wonder, too!! This was my choice tho, I could not see him in assisted living with how sick he was. There may come the day when he is getting up, sitting and walking where I can't manage him--and may need assistance in some form. We will cross that bridge when we come to it. I would love to cross that bridge!!

I appreciate all the help and support that I have been given by so many; it has made coping with this possible. The children have been absolutely wonderful with all the help they have given, and each in different ways.We couldn't ask for a better family. The church family, neighbors and friends have also been phenomenal. Thank you,everyone!!

The morning hours are really busy with all the items I am supposed to do. Visiting hours and phone calls are every day from 2 to 4:30. ---except Tuesday---Tuesdays, please no phone calls or visitors at all. Bob has a massage around noon and sleeps all afternoon, so that gives me a chance to catch up on sleep. Also, please come to visit with Bob, not me! As much as I love people, your visiting with Bob gives me a chance to nap, do bills or other paperwork or the many items that need doing. There will be time to visit with me in the future. Thank you!

I hope you all enjoyed a wonderful Christmas and we are wishing you a Happy New Year!

Priscilla

New update from my Mom:

Need to update before I lose this computer again!!

This last week has been full of many little surprises! The occupational therapist come out on Monday and tested Bob's swallowing ability. He did well on two tiny spoons of applesauce, but not on two other spoons, coughed a lot. So we will wait for a few days and try again. He is drinking water out of a cup, tho. James suggested that we cut a paper cup down about two thirds, so that he can hold it easily. All my cups were too heavy for him to hold. (With a little help). He also can have ice chips from a spoon four times a day. He loves it but says they are cold. He is moving his left leg from the hip quite well and just started shrugging his shoulders a little yesterday.

On Friday Hospice delivered a wheelchair and "Hoyer"---which is the sling and hoist to lift him into the chair. Jenny and Doug, Rick and a couple neighbors participated in the demonstration---it is definitely a two (or three) man job. So when Bob feels ready, we will try the wheelchair---could be a few days or longer.

He is talking more and out loud a lot more. He now smiles with both sides of his mouth except when he is tired. All in all, his progress is encouraging. He is still very fragile and tires easily. He loves company but often falls asleep in the middle of a visit. Feel free to visit every day except Tuesdays from 2:00 to 4:30, but please call first because we have found that we cannot hear the knock or doorbell with the oxygen pump, fireplace fan and sometime the TV going.

Thank all of you again for making my life easier, and all the encouraging cards, letters, prayers and holiday wishes.---Will update again, sooner, I hope. Keep praying, please!

Priscilla

Hello,

Below is an update from my Mom. Her internet has been on and off, so it has been awhile since she's been able to update. Please feel free to pass this along to friends and family to keep them in the loop. Our apologies for not responding to everyone's individual phone calls and emails - it's so much easier to just do these big updates to everyone. But we really do appreciate the support.

Thank you. May you find peace, comfort and joy during this holiday season.

Love,

Noelle

I am sorry that I have not written before this, but I have found Home Hospice the most overwhelming and demanding venture in my life. Hospice is finally realizing that Bob is not ready to leave us and is bringing the needed supplies and additional aides. Because they were told that he wouldn't live more than two or three days, I was given minimum supplies, which added to the stress.

Bob is holding up well; I see tiny improvements every day. He whispers a lot and makes sense about eighty percent of the time. He is also talking out loud a little. It is so good to hear his voice again! He is moving his legs and arms more every day. We are doing gentle physical therapy with him every day and he is responding with some resistance, which is great! He has had two massages and loves them, sleeps like a baby afterward. He has begun to swallow more and now wants to suck the water out of the mouth cleaning sponges, so after we clean the mouth, we let him suck a little. Since he is on constant oxygen, his mouth is dry. I am sure the cold water tastes good!

Bob loves company; he recognizes everyone and is able to stay awake for short periods. Because the mornings are so busy, we are limiting visiting to the afternoons. From 2:00 pm to 4:30 pm are good visiting times. Every day except Tuesdays---he has a massage on Tuesdays at 1:00 and sleeps the entire afternoon after that. Please also try to keep phone calls during the same time frame. This helps let the phone be available for health care workers to call in.

Thank you to everyone for the cards, food, prayers, emails, phone calls, visits, errands and general help. It is greatly appreciated. My refrigerator is full - so unless you want to buy me a new fridge (just kidding!) - please keep food limited to Tuesdays and Fridays. If anyone wants to volunteer to be my "food coordinator" - that would take some stress off of my plate and I'll just communicate through that one person. Please let Noelle know through email and she will confirm with you.

A special thank you to Carol Nohavec. She has done an incredible job coordinating volunteers from the church to help with different things. I'm surprised she hasn't sprouted wings by now.

Once again, thank you and please keep praying for his recovery.

Priscilla