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

My Mom's computer is having issues, so she hasn't been able to write another update. My Dad arrived home safely to his new hospice bed on Sunday. He is doing ok. There have been several hospice aides who have come through. My Mom is exhausted from all of the care that goes into a hospice situation.

Thank you everyone for your continued support, prayers and offers to help. My Mom will let you know when help is needed. This is definitely a stressful transitional time.

Love,

Noelle

She wrote this last night:

Bob's "peg' surgery went well. He was somewhat tired but I think he feels much better with the feeding tube out of his nose and all that tape on his face (so that he wouldn't tear the tube out) cleaned up. When I left the hospital, he was resting calmly. After 24 hours, he will be ready to leave---!!!

The hospice bed was delivered this afternoon with all the oxygen, suction pump, etc...this is going to be interesting. I was checked out on the equipment but am still a bit nervous. Thank goodness there will be a hospice attendant with me---at least at first.

It is time to go back to the hospital----will have a better update in a couple days.

Thanks again for all the prayers and good wishes.

Priscilla

Here is an update from my Mom:

Bob continues to stay about the same, at times he seems stronger, but with all the noise at the hospital, his sleep is constantly disturbed. He was very exhausted this morning, he coughed a lot last night and it was not until almost eight this morning that we could get respiratory to suction him deeply. Then he tried to sleep, but was constantly interrupted. I know the medical personnel are doing their job but it would be nice if they could all come at about the same time. I am able to suction him, but I don't dare go deeply for fear of dislodging the oxygen or feeding tubes.

He is still very weak. Physical and occupational therapy are working with him a little every day; he tires so easily. We are proceeding with the Home Hospice Care, and if all works out he should be home by Saturday. Then a new era begins.

Thank all of you for the prayers, good vibes and wishes and offers of food and help. At this time I am not home enough to eat, but there will be the time when I may need help, so you may be hearing from me!

Thank you again,
Priscilla

Hello,

My Dad continues to rest a lot. On Tuesday evening we had a scare. His airway became blocked and his blood pressure dropped to 49 over 29. We thought we would lose him. But he is resilient and bounced back once they reopened his airway and gave him some added liquids.

He has been fighting another infection. It sounds like it came from either his IV or the sore on his nose from the BiPAP mask. They are giving him antibiotics to treat that.

He is very weak and has lost a lot of muscle mass and 10 pounds since he was first admitted. At times he is more responsive than others. He can still squeeze hands most of the time and still nods to questions, although he is not as responsive as he was two days ago.

My Mom hasn't had time to write an update. She wants to be with my Dad as much as possible - and she is caring for him as only she could. I'm amazed by her strength - I know it is fueled by her deep love for my father.

United Airline Captain Molly Flannagan Littlefield, a neighbor and fellow church member, recently dedicated her flight from Chicago to Seattle to my Dad. Many of the passengers, all strangers to my Dad, wrote messages to him the airline napkins. Many signed their names with their row and seat numbers. It was amazing looking through the variety of messages from all over. As Rick said to my Mom after looking at them, "I'll never look at these airlines in the same way again." (We will scan these in and share them down the road - they are incredibly touching)

I was able to start putting together a slide show of my Dad. Many treasures have yet to be scanned in - but this is a start.
http://www.flickr.com/gp/69894039@N00/MM50VX

Your prayers, cards, emails, calls and visits are greatly appreciated. This has been an emotional roller coaster for us, as we approach one month of his hospitalization. Your support helps us feel grounded and connected to to greater community of family and friends - representing love and support. Thank you again.

Love,

Noelle