Thanksgiving 2008

I just moved into my first condo. It's been a long time coming - I bought it pre-construction, so I've known about it for about two years. During all of my Dad's health issues, the impending move was on the back burner. Something on my mind, but also a great lesson in patience and goal setting. Putting away a good chunk of my paycheck each month in savings. Living in a group house setting.

Every time my brother and I have moved - yes, even when Carter and Lisanna moved to Belltown last year - my parents have been a part of that process. I knew, obviously, that they wouldn't be up to helping me move this time around. I'm impressed by their health - but that's a pretty stressful thing to do. Moving isn't fun for an able-bodied 28 year old!

I moved into my place the Sunday before Thanksgiving. Yes, a little ambitious, but I wanted to host Thanksgiving. It was a fantastic motivator to at least try to get the place in working order quickly.

My parents were able to come!

Here's Dad and I on Thanksgiving:



Here's my very first turkey - I brined it and it turned out well:



Carter carved the turkey:



Here's my mom and me:


(Isn't she beautiful??)

Here are my parents, showing off their Bob sweatshirts, courtesy of AML:



And a great family photo:

Friends and Family,

My Mom asked me to send all the emails from the past year to my first grade teacher. First, I admit this is a fairly remarkable thing. The very fact that my parents are still in contact with my brother's and my first grade teacher is an incredible insight to their character. I'm so humbled and honored by their presence in my life on a regular basis. They are truly remarkable people.

In thinking about that task, I decided that instead of forwarding each and every email, it might make more sense to just create an online archive of them. We had considered this originally, but it just clicked today how much sense this makes. By creating a blog, people can easily see what the family is up to and my Dad's continued progress. It's more interactive and creates a nice sense of our family's community.

So I've posted all of the emails as an archive of sorts. This is, in essence, a tribute to my father, Robert Smithhart. Or, as his sweatshirt says, "Bob: The Man, The Myth, The Legend."

Lots of Love,

Noelle

From Joseph Atak, from Sudan

HEY NOELLE,

I was caught by surprise when I was told that your dad was admitted many days in VMC intensive ward.I run there with George I called his name he open his eye to give me a signal that he recognise my voice but inside me it tore me apart.I wish I have time to talk to him,to told him how much I proud of him, for everything he did to me and for all of us,he was figure father,we prayer for him and we love him too.
with much LOVE,

Joseph

Joseph,

Thank you for your email. These last couple weeks have been very hard for me and my family. And I consider you and George part of my family too. My Dad's health has been very unstable and knowing how much energy he used to have, it is very difficult to see him in this state. Thank you so much for your prayers and support. I know your presence in my Dad's life has meant a lot to him - and that my parents love you very much.

I've been gathering pictures of my Dad and wanted to share them with you. If you click on this link, you should be able to look at them. It is a work in progress - there are many that are not included yet. But I think you might find these interesting - especially the older ones!

http://www.flickr.com/gp/69894039@N00/MM50VX

With much love,

Noelle

HEY NOELLE,

Thank you so much,Noelle I really understand the pain they whole family go throught we are really with you at this time of pain and I take a look at each picture I understand the reallity of what a momory means to you at these movement and thank you for sharing your dad photos with us.

with much
LOVE

Greetings Everyone,

A year ago today Bob was brought home from the hospital and we were told he had two days, three at the most to live------Wow, what a year this has been---to see the progress he has made is really phenomenal. It has been a couple months since I have written an update; my excuse is that I have been too busy and/or too tired.

About six weeks ago he started climbing stairs, (beginning with two or three and working up to now the entire 14!) first one at a time with both feet and then about three weeks ago one stair after the other. He would back down---always with an assistant about two steps behind him. About three weeks ago he began coming down the stairs face forward, one at a time, (wearing the belt) also with assist. Both Connie and Kay have worked with him on falling techniques. If he is going up and becomes unsteady, fall on his knees, if coming down face forward, fall on his bottom. His balance is improving so much that I am not too worried anymore. About two months ago he was sitting on the side of the bed trying to reach his shoes and slid off the bed and hit his right rib on the corner of the night stand. Kay and her husband helped me get him into the wheelchair where he went into shock. That called for an ambulance ride to the ER, where we spent the afternoon---X-rays showed no lung puncture, interior bleeding, cracked or broken bones. He had a bruised rib which healed in a couple weeks. It did slow down the progress he was making, but he is once again determined to move forward.

He has had a couple other falls, one, we forgot to put the brakes on the wheelchair and as he was sitting down, it moved away from him. Another, as he was moving from the wheelchair to the bed by himself, he slipped----these were lessons for all of us, but he did not get hurt. The rug is pretty well padded. He is doing so well, it is easy to become complacent.

He walks with the four wheel (big wheel) walker down the driveway and almost to the end of the street (that runs by our kitchen window) and back---that is well over a block---he does this twice a day most days--with Connie, Kay, me or anyone else who will walk with him!! Yesterday he walked without the walker, Kay was holding on the belt. He did not walk quite as far as his posture was different without the walker and he was totally exhausted. Even he said that he over did it!

He also walks with the regular walker, but he complains that the tennis balls wear out too fast and make him skid! He also walks from the fireplace to the carport door with the "quad" cane---four footed cane. Always with an assistant or me. He has also walked a few steps all by himself! It was great seeing the smile on his face! Connie Birse and Kay Simon are so very good with him---he does different exercises with them that he will not do with me!

These ladies are so patient and very innovative. I know that they are responsible for much of his progress----and we are so appreciative. They alternate days and times.

Bob is able to eat everything now, once in a while will choke a little---I told him that he has to chew every mouthful 28 times, he has slowed down and tries to do that!! Apple skins, walnuts and peanuts were the last hurdle and he does well with them now.

Bob is also reading more (even the daily paper which he lost interest in a couple years ago!) and taking interest in scientific TV shows---all progress--. "JAG"is still the favorite! (on DVD's) "NCIS" a close second!
I am getting a bit more sleep, he usually wakes me once, sometimes twice a night. If I sleep three hours or less at one time, I basically take care of Bob the next day---if it is three to four or four and a half, I will get dishes and some laundry done. When it reaches a five to six hour point, I actually get the floor vacuumed!! And over six hours---life is almost normal----those days are few and far between tho, so I still ask that we receive no phone calls until after 1:30 so that I can take a morning nap when Bob does. And I almost always take an afternoon nap when he does----

Better close for now, thanks to everyone for the prayers and encouragement, and we are still getting goodies!!! Thank you!

Priscilla

Greetings Everyone,

It is hard to believe that a month has gone by since Bob's birthday party. The party was wonderful!! His greatest desire for a long time was to reach the age of 80, and to walk! And he accomplished both!! He was so pleased with all the people who came to celebrate with and honor him, he still gets emotional when we talk about it. Thank you, all of you who participated in any way to make it the successful day that it was. And a big thank you to the neighbors and friends that helped with the yard, food and house the couple days before the party---you all helped make the day very special!!

We also want to thank everyone that sent cards, notes and letters, and those of you that traveled long distances---wow--what a compliment to him!! (Thanks, DiDi!!)

A couple days before the party I found out that several people had not received an e-vite, I am so sorry, I understand that some receivers are not able to receive them. But it was too late to rectify that because I had no idea who did or did not get an invite.

Bob is getting stronger every day, and more mobile. He walks with the walker two or three times every day--through the house, into the carport, down the ramp and outside in front of the hangar and around the apron for 150 or more paces---Eli (physical therapist) has measured 150 feet several times now. His arm, shoulder and leg strength are noticeably stronger every few days. Getting in and out of bed and into the wheelchair is easier ----as well as bath mobility. He is so determined, it is inspirational to work with him. The therapists and Connie and Kay do a tremendous job with exercising him. The difference just since coming home from rehab is so noticeable. He takes some really good naps after these workouts!

Well, here it is a week later and I need to finish this! Bob has gained even more strength, dexterity, etc... since last week. He buttoned all the buttons on his dress shirt by himself this morning----impressive! Prior to this he would button about half and his fingers would get too tired.

Three different people have said to me in the last month---what do you do with your time now that Bob is walking----well----I have been trying to think of an answer that doesn't sound like I am whining or complaining, so I will give you a sketch of my day---please feel free to skip this!! We get up at 7:30 (7:00 if the therapist is coming at 8:30)--take the BFS (fasting blood sugar reading) help Bob (assist or minimal assist) out of bed, help him dress, go to the bathroom---He wheels to the breakfast table and takes him own blood pressure reading and shaves. I prep freshly cut fruit or juice and a balanced protein, carb and fat breakfast----usually pretty healthy. After that, the morning meds and the long term (24 hr) insulin and a few supplements. Depending on therapist schedules, he may take an hour nap or read the paper until the OT, PT or helper has arrived. During that time, I eat breakfast, then empty the urinals, spray, wash and rinse them (sterilize them about once a week)--he uses three or four a night. Therapy is usually at 1030--1100. After an hour of therapy, he takes a nap, About 1230--1:00 I start with lunch, fresh fruit, healthy combination---we eat, then- depending on how well we have slept, it is nap time for Bob or both of us until the exercise lady arrives---4 or 4:30. Then dinner prep, eat, take meds and supplements and maybe go for a walk with the walker---watch TV, get ready for bed, he brushes his teeth, I check his BS reading and give him his insulin. While Bob is having his therapy, exercises and naps, I run the dishwasher almost every day, some hand wash; about 5-6 loads of laundry a week, clean Bob's bathroom a couple times a week, vacuum two-three times a week---the area we use most----if I have enough energy, do some cleaning in the rest of the house.
Also, this is full assist; give Bob two shower/shampoos a week, and one sitz bath a day, sometime more. Also, make sure he has at least two pitchers of cold water a day, clean cups and straws. Every week to ten days, cut fingernails and toe nails, clip mustache, other facial hair---an occasional Epsom salts foot bath, and lavender oil foot rub.

I give partial or stand by assist about seven times a day to the bathroom, also several assists a day into and out of bed, morning and night and two or three naps a day. His legs and arms are getting stronger all the time and he is almost able to raise himself out of bed on his own.

In addition to this, I am trying to muddle my way through medicare and insurance forms, do the bills, go thru mail, plan healthy menus and all the other things that all of you do every day! Nothing extraordinary, but I am really tired at the end of the day.

Now, I have to address another issue---in the last couple months, several of you wonderful people have asked me to go to movies, concerts, plays, lunches and /or shopping with you. At this time, that would be more stress than I could handle; maybe in six months or a year. Some of you have even offered a "Bobby sitter"! I so much appreciate your offers----- but I would take a sitter for a couple hours and go up and sleep undisturbed for two-three hours or take advantage of your generosity to run errands; pharmacy, bank, post office, groceries etc..... Bob still wakes me from one to four times a night. Many days I take as many naps as he does to try to catch up. His reasons for waking me are as varied as his pillows being uncomfortable, being too hot or cold or having to change some bedding or clothing, to his feeling vulnerable---what would happen in case of a fire, etc.... He usually falls right back asleep while I , after having been up, stare at the ceiling for minutes to hours!!

My sister, Delphine, has stayed overnight several times and given me a welcome break; my sister-in-law Mary Lou, (from Brea, CA) has stayed here two weeks (one each in JAN and July). They answer the phone, door and deal with any other item while I sleep!! Also help with Bob's needs during the night. And fold clothes and iron, etc..... Kay Hanson, Carter and Noelle have also helped with the overnights. In August, I hired my great nephew, Jonathan Kampa, (David's son) [Brea, also] to help for a week. What a responsible, helpful and gentle person he is! It was so great being able to go up to sleep knowing Bob was in such capable hands. I caught up on enough sleep that I have not fallen asleep at any red lights since then!! In addition to taking such good care of Bob, Jonathan helped with various things that needed doing. Wish he lived closer------

Better close, this has become much too long!!!

Priscilla

Bob's Birthday

These are exactly 1 month and 1 day after the big event... these are pictures from Lisanna and from my camera. Enjoy!


http://www.flickr.com/photos/umbra98/sets/72157606524210351/

Thank you for everyone's birthday wishes and for those who were able to make it! I know my Dad was very honored and humbled by the celebration.

Love,

Noelle

Dear everyone,

Just a quick update before I call it a night. Bob has been home from the Acute Rehab Unit since June 26th. They really worked with him, he is so much stronger it is amazing. He can walk with the walker at least 100 feet before he falters, and is able to stand for several minutes. (with the walker or an "assist" person".) Getting in and out of the wheelchair is going very smoothly as well as up and down with (into) the walker. This makes all the bath activities so much easier for both of us, and any aides. It is taking a while getting used to another new schedule, therapists, aides, a more normal eating schedule, new meds, etc...., but the new regime is falling into place.

We are still under Medicare's "Home Health Program", which means a physical therapist and an occupational therapist twice a week each for about an hour----They are coming up with all kinds of exercises---like tossing a small pillow to him when he is standing in the walker---and he tosses it back---he can toss ten times before he gets a bit unsteady. Both his balance and strength are improving daily. We also have hired two ladies to take turns exercising with him twice a day (sometime once). They both go to our church and also are neighbors. They are doing a wonderful job.

This last Sunday, the 6th, He went to church for the first time in almost a year for the "Silver Servant's Service"---we thought an appropriate first. He really enjoyed it---Carter and Doug and Jenny were able to join us. They brought the mike over to him and he thanked everyone for all the prayers and help in getting him to where he is. When he got home he slept almost all day and again slept well all night---a first. I think all the getting up, standing and singing totally exhausted him---I didn't know "How Great Thou Art" and "God Bless America" each had five or six verses!!!

I am getting a bit more sleep and that means I am actually accomplishing a few things around here that have been neglected for two, three years---good feeling! Still could use more sleep, tho!

On Saturday, August 2nd, we are having an open house to celebrate Bob's 80th birthday---(July 16th) and "I can walk"!! Noelle is handling the e-vites----hope all of you can come and celebrate with us. Bob is so pleased that he can walk----it was so iffy for so long.

Need to go to bed----Thank you again for all the positive prayers, thoughts, cards, and all the items I can't think of right now!!

Priscilla

Greetings to all---

A quick update about Bob--he is walking more and more with the walker---but needs the wheelchair also. His legs and back are getting stronger every day. He is also walking straighter (when he is not too tired). The therapists pushed him to the limit, so when he sleeps he is really out. Unfortunately, these deep sleep naps are during the day and he still has trouble sleeping at night. He is also able to do so much more for himself, like dressing (upper body; lower body is still difficult), brushing teeth and hair, eating well--- reaching for items etc... He gets up from the bed into the wheelchair or walker with minimum assist, same with bathroom commode and shower slide bench.

Bob came home on Thursday, the 26th returning once again to Home Health Care. We will be exercising with him at least twice a day, and walking as much as possible. Any one who would like to come and walk with him or exercise would be greatly appreciated. We have an aide coming in every day for one or two hours as well as out patient physical therapy and therapists from Home Health. I don't have a schedule yet and it will probably take us a couple weeks to develop one.

We sent out an invitation that we will have an open house celebrating Bob's 80th birthday and "I can walk" celebration. We had originally mentioned the middle of July, but we now feel that would be too soon. August 2 should give him enough time. Will keep you posted on details!

I have been getting more sleep, but I think I was so sleep deprived for so long that I still fall asleep within a minute or two when I lay or sit down and often wake up two hours later in a half sitting position on the way to lay down!!

Thank you, everyone, for the visits, cards, phone calls and prayers---much appreciated!

It is wonderful having him home!!

Priscilla

Greetings to all---

A quick update about Bob--he is walking more and more with the walker---but needs the wheelchair also. His legs and back are getting stronger every day. He is also walking straighter (when he is not too tired). The therapists have been pushing him to the limit this last week, so when he sleeps he is really out. Unfortunately, these deep sleep naps are during the day and he still has trouble sleeping at night. He is also able to do so much more for himself, like dressing (upper body; lower body is still difficult), brushing teeth and hair, eating well--- reaching for items etc... He gets up from the bed into the wheelchair or walker with minimum assist, same with bathroom commode and shower slide bench.

Bob will be coming home on Thursday, the 26th so we will once again began Home Health Care. We will be exercising with him at least twice a day, and walking as much as possible. Any one who would like to come and walk with him or exercise would be greatly appreciated. We have an aide coming in every day for one or two hours as well as out patient physical therapy and therapists from Home Health. I don't have a schedule yet and it will probably take us a couple weeks to develop one.

We have mentioned to several of you that we will have an open house celebrating Bob's 80th birthday and "I can walk" celebration. We did mention the middle of July, but we now feel that would be too soon--after we are home for a few days and see how all is going, we will find a date that will work. Tentatively, August 2 may give him enough time. Will keep you posted!

The house is almost ready for him---some safety bars still to install--will be a new life around here!

I have been getting more sleep, but I think I was so sleep deprived for so long that I still fall asleep within a minute or two when I lay or sit down and often wake up two hours later in a half sitting position on the way to lay down!!

Thank you, everyone, for the visits, cards, phone calls and prayers---much appreciated!

Am looking forward to having him home!!

Priscilla

Greetings All!

Bob has graduated from walking the parallel bars to walking with a walker---two days ago he walked 22 feet three times and yesterday almost 90 feet total!! He is still pretty shaky but is building strength every day. All of his functions are slowly improving. Some of the therapists feel he is not trying enough---they were not around eight months ago!! I am very pleased with his progress.

He wants to stay until the end of the month, but they want him to go home sooner. He wants to be as strong as possible so that he can do most everything for himself. The house is not ready for him yet, and I doubt will be for at least two more weeks. I just ordered all the safety bars and shower necessities---lots of changes to be made.

We want to thank all the people who have visited him, and the cards and phone calls. He is so pleased to tell me about them. But especially, all the prayers; his present status would not be possible without the many prayers from all of you and many others. All the positive thoughts and prayers have surrounded him since October---thank you very much. We especially want to thank our Pastor, Daniel Foster, for his continued visits and the monthly Communion. This has meant so much to us.

And while I am on this subject, Bob Garland, the leader of the senior group at church "Silver Servants" has been a faithful visitor, even when Bob falls asleep on him!! And of course Carol Nohavac, the great organizer and the most patient person on earth---she is still helping---Thank you---and thank you everyone who has helped him reach this level of health.

Also all five children, spouses and families have been so helpful, what would I have done without them?!!

I am finally getting consistent sleep---have had several nights of seven hours without waking. It is just amazing how good it feels to finally have some energy!! I have to keep my health up as I don't know what the future will bring.

I will be spending the night again so need to get some of his laundry ready-----Thank you everybody!

Priscilla

Greetings everyone,

Just a quick note here, Bob is having surgery tomorrow morning between eight and eleven to have the peg tube removed from his stomach. He is eating normally now so it is in the way for dressing, bathing, etc...

When he walked with the parallel bars and therapist this morning, his steps were much more firm and about four-five inches long---wonderful progress!

Thank you everyone, for your visits and cards--we are both so appreciative of all the support we are getting. God Bless you, everyone!

Priscilla

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!

-------------------------------------------------------

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