REHAB UPDATE

First of all, I want to apologize for asking you to continue on this journey with us and then not keep you updated. I think about it -- but that seems to be as far as I get. The funny thing is, I had almost completed an update on September 17th and realized today I never got it posted. In this day and time we are all busy and struggling with issues that affect our lives - thank you for still taking the time to keep us in your thoughts and prayers.

Well, as you know, it has been four weeks since the last update. That means four weeks in rehab has come and gone. Ken is getting stronger and is making progress, it is just not as much as we were thinking it would be. Every Wednesday the rehab team has met to discuss Ken's case and then the social worker has called to let me know what is going on. For the past several weeks there has been concern the insurance provider was not going to allow Ken to remain there. In this type of rehab facility there is usually more visible evidence of progress taking place, and although Ken is progressing, he still requires maximum assistance on many things. If the insurance allows him to continue, the fact remains there are only about thirty days left that will be covered. My understanding is, when we reach that point, he will either come home or it becomes "private pay" at a nursing/rehab facility.

My conversation with the social worker yesterday left me a little discouraged. Although progress is being made, the next 30 days are not likely to result in any major changes. That means he will still require 24/7 care with a large amount of hands on assistance. There are decisions that need to be made soon regarding his care so the details can be worked out. As we all know - TIME WILL FLY BY.

Ken remains on oxygen at this time and continues to receive dialysis on the M-W-F afternoon schedule. He continues to get three hours of combined PT and OT five mornings a week and shorter sessions on the weekends. Ken's lack of endurance is one concern the team continues to bring up. I was able to see the short session last Sunday and was pleased with what he was able to do - he has come so far. This journey continues one step at a time, day-by-day and you just never know what the next step or the next day will bring - but then that's how life is for everyone.

We both know God will walk us over this next bridge just as He has faithfully done all along. Please pray both of us would have the wisdom to make these decisions as well as strength of body and mind to endure these next weeks. I will update again soon - there is much on my heart I would like to share with you. We feel so blessed to have you apart of our lives.

GOD BLESS YOU

NEEDS FOR MOVING DAY

Ken and I thought this day was never going to come. Moving to the REHAB Floor!! Since coming back to Nashville in June we have been waiting for the word to be given that Ken was accepted to the rehab facility. The move is only one floor up in the hospital - but - IT IS A HUGE MOVE. This is where the hard physical work for Ken begins. It is going to take a great amount of determination on his part. He will have dialysis this morning and then he will be going to his new "digs" - (room). In rehab he will have three hours of physical and occupational therapy a day. I know that does not sound like much for those of us on the side lines; however, it will be.

PLEASE PRAY FOR HIS STRENGTH AND DETERMINATION TODAY AS WELL AS PEACE AS HE MAKES THIS, ANOTHER, TRANSITION ON THE LONG AND WINDING ROAD!!!

DAY COUNTING?

I know you all think I have stopped blogging - not so our faithful prayer warriors. I need a voice activated computer that could be operated in the car while driving. If it could just read my mind that would be even better - sometimes I am just too tired to even formulate a sentence that makes sense. It has become even clearer to me that we were exactly where we needed to be for all of those months in Baltimore. Ken is still progressing in a forward direction and for that we are extremely grateful. There have been some days in the last several weeks that I wasn't convinced of that though. He continues to remain in the hospital and not in a rehab facility and there are times I wonder if he is getting stronger at all. Occupational and physical therapy come every morning to work with him and then he still has dialysis on Monday, Wednesday and Friday afternoons. Since I was off work on Labor Day I had the opportunity to go sit in on Ken's therapy sessions. It was good to see how they were working with him, I just don't understand why his progress is so slow.

When I last shared with you, Hannah was to soon be back in Nashville for a visit before she had to return to work. Although Ken seemed very tired that week, they were able to visit quite a bit. She did not miss a day going to the hospital so it was "quantity" as well as "quality" time. She even prepared a chart that listed the goals she and her dad put together. The top goal is still to take Jack fishing, well that is after GOING HOME. Ken had a chance to see the teacher coming out in Hannah first hand - she awarded him two gold stars for accomplishments in his therapy. She even left me some stars to award for other accomplishments - I thought motivating himself 65 feet in the wheelchair was a great one to be added. I went and bought some weight training gloves that have open fingers and a padded palm to help him grasp the wheels and protect his hands. He looks pretty cool to me with those leather gloves and hospital gown racing down the hallway - OK, maybe not racing, but to those of us watching it was exciting.

Wii- do you know what that is? GREAT FUN!! For a few of you who may not know, Wii is a gaming console that is used to experience interactive games. I had heard that the Wii was being used in different facilities to promote some physical activity as well as interaction with others. I was wondering if it might be good for Ken - I wanted to try it before buying. Our gaming guru, Riley, set me up with his for the weekend. This was the same weekend Hannah was here and Josh, Melanie and Jack came to visit. Talk about a crazy hospital room - it was definitely filled with laughter. We were bowling, playing tennis and baseball, golfing and even boxing. Ken played a little but mostly he and Jack just watched, it was quite a sight. We had a great time!!

It seemed like Hannah had to leave all to soon - that week just flew by. There is a church sign I pass every day on my way to work, and for a while it read, "Don't count the days -- Make each day count". I have pondered that thought a lot. Counting how many days until...........is not where my counting lies. Rather it is looking back and counting how many days it has been since.............. Especially lately. Did you know that from February 22nd to September 6th is 198 days. If you you tack on another 51 days, that takes you back to January 2nd, when I had to call for the ambulance and that puts the total at 249 days. Whether it is counting since.... or until......I am not living in the present. How can I make the day count if I am not in it? Lately, I have been so frustrated and stressed out. I find myself getting extreme road rage when I am driving from one place to another. I just want it to all be over! For whatever reason, (most likely, taking my eyes off the One who knows the way, and feeling sorry for myself) I have lost sight of taking one step at a time and being content with God's time table. The only reason I should be looking back is to remember how faithful God has been and to give Him honor and praise - HE IS WORTHY!!!!!

Please pray for me! This state I find myself in lately is not good on me mentally or physically. Would you pray for Ken's mental and physical health as well. He wants to come home so much. Although I feel like I am tied to the hospital, I am still able to have a change in my routine and scenery. Ken has been very patient with his situation but he gets discouraged. As I said earlier, we are very grateful that he continues to progress. We are grateful that each biopsy continues to have a good report and shows no signs of rejection. The steroid dosage has been reduced each time and that is definitely something to be grateful for. He is scheduled Tuesday morning for another biopsy and we are praying that the same positive results will be the word. AS ALWAYS, WE ARE GRATEFUL FOR YOU AND YOUR EFFORTS TO GET US THROUGH THIS PART OF OUR JOURNEY!!

WE'RE STILL HERE - JUST SLOW!!

AUGUST 10, 2008 - CRAZY!! What a year. I recall wondering and writing at one point in this journey about why weekends back in the "real world" went so fast. Guess what - I'VE RETURNED to the "real world". I have been back at work for two and half weeks and still working on getting back in some kind of routine with everything else. Ken's prospective of time is still the same -S L O W.............. He is working hard with PT and OT and definitely getting better, just not as fast as he would like.

This past week, Ken and I agreed I would go to the hospital on Tuesday and Thursday nights and then on Saturday and Sunday. He is still receiving dialysis on M-W-F and his scheduled time is 1:00. That does not mean 1:00 is when they get started or even that 1:00 is when he gets picked up to go; therefore, he does not get back to his room before 6:00 or 7:00. He is usually tired after his treatment, so by the time he eats and the nurses come and do their evening assessment he is pretty much ready to go to sleep. That gives me those nights to try and get something done at the house. Sounds like a good plan - I'm sure you all know how it is when you have a plan though!

This week the physical therapist brought in the tilt table. If you recall, that is the device that is raised by degrees so that the patient is in a more up right position. They are trying to build up his tolerance to his weight being on his legs and feet as well as strengthening the leg muscles. When they stand Ken up with the lift that straps around him, he is not able to stay up more than a few seconds. The therapist mentioned bringing in a wheelchair so Ken could start working on transferring himself into it. That would be great! He could perhaps get out of the room other than just for dialysis. Thursday night I took him a T-shirt so that occupational therapy could start working with him to put it on. WOW!!!!!!!! I'm sure he would love to have something on besides those lovely hospital gowns. With the weight he has lost that T-shirt may look like a gown when he puts it on.

It is still hard for him to retrieve things to do in the bed. We were able to get another bedside table so we could leave his Bible and a crossword puzzle book on it all of the time. This way when his food tray comes there is not a constant moving things around and then not have them where he can at least try to get them. I am sure that will start getting easier, the more strength he gains in his hands and arms. The OT brought him a "stick" that he can use to push the buttons to raise and lower his head, but unfortunately he can't get the button that puts the bed into a chair position. Since the bed he has is not a regular hospital bed, those tables do not roll up under and get in position very easily but this is a start and he works on it.

The last biopsy done had awesome results. The heart is functioning just as it should and all of the pressures were great. There is still no sign of rejection --PRAISE THE LORD!!!! Ken's doctor was able to lower the dosage of the steroid and plans to do another biopsy in the next week or so to see if they can lower it again. The steroid is part of the anti-rejection medications and has effected and weakened his muscles. It is also the reason he has had to have his blood sugar checked and be on insulin. With the dosage being lowered after this last biopsy Ken is no longer having to go through the finger sticking and insulin shots. That is a big PRAISE THE LORD as well.

Hannah has gone back to school to get her masters degree. She found out she will have a little time between her summer classes and returning to work -- She is coming home Tuesday!! It will be so good to see her. When she saw her dad at the end of March it was difficult for her because Ken was very lethargic the whole time she was there. After Hannah left, we found out Ken had that first blood infection which was the cause of him being out of it pretty much all the time. This visit should be much better for both of them. She will stay for a week before returning to Portland. We have been so blessed by the generosity of people providing plane tickets for Josh and Hannah since February. That generosity is also making this trip for Hannah possible. It had been offered to us when we were in Baltimore and we did not have the opportunity to use it. God is so faithful in providing - it was still available to us at this time. Ken was confused when I told him Hannah was coming on the 12th. She had already told us she was going to come home for Christmas and so December is what he was thinking. He asked, "She's not coming for Christmas?" and when I told him yes she was, he looked at me so funny. Then he said, "Thanksgiving?", still with that look of total confusion. It finally hit me that he didn't realize her schedule had changed. When I told him it was August the 12th, he was still a little confused but that look was replaced with a smile and eyes full of joy. He only knew she would not have any time this summer to come home so that was the reason for his confusion. Please pray for me on Wednesday morning as I drag myself out of bed--Hannah's flight does not get into Nashville until after 11:00 Tuesday night - no telling what time my head will hit the pillow.

Ken has definitely enjoyed seeing Josh, Melanie and Jack the past couple of weekends (yes, me too. We have appreciated them driving in and spending the weekend away from home. After the first of the year, they moved east of Nashville to Cookville. It is about an hour and half away so they just come in and stay. They have been trying to sell their house for months now, (after watching the news we all not what that is like), but this past week they finally have a contract and are just waiting for the inspections. They have gone to the beach in Florida so it has been a little quieter at the hospital this weekend. We look forward to seeing lots of new pictures.They have gone to the beach in Florida so it has been a little (OK, a lot) quieter at the hospital this weekend. It has been such joy to watch Ken and Jack interact with each other. Jack just sits up there in the bed with Ken and chatters away. You would never know that the two were separated for four months - Jack has, not even once, hesitated going close to Ken. That goal of going fishing is getting closer for the two of them - wait til you see those pictures!

I will try to get you up dates sooner than I have this time. We know you are still praying and we are so thankful. I am looking forward to reporting how those prayers are answered in yet another week of this journey!

A GREAT WEEK

We're working on the next 32 now -- We had a great anniversary! I arrived at the hospital Wednesday night just after Cheryl and Larry entered Ken's room. There I found flowers, cards, a red and white checkered table cloth on the long bedside table and a faux candle that added just the right touch for a romantic dinner. Cheryl had thought of everything. Earlier in the week, Larry had asked Ken what he wanted for this special evening's meal -- PIZZA! You just gotta laugh - Cheryl is a wonderful cook and Ken wanted our favorite pizzeria's vegetarian pizza. Sooooooo-- we had pizza and Caesar salad on white plates, with lemonade and Dr. Pepper in lovely stemmed glassware, and dessert on cute little dessert plates. It was a fun meal and easy for Ken to eat. I had taken the laptop and CDs so we could have a little Italian music and we had the Nashville skyline as our view. It couldn't have been better. Cheryl and Larry had provided a vase of white daises for our dinning table and that sneaky Tin Man had once again managed to surprise me with flowers, along with not one, but two cards signed by him. One of the cards even contained a hand written message, and since we had not worked on holding a pen and writing since being back in Tennessee, I was quite surprised and very touched. Our neighbors, Brenda and Tom provided us with sparkling white grape juice and glasses along with a mixture of chocolate kisses. I just wish I had not left the camera in another bag so I could have pictures to show you. Later I did take this picture of the flowers -- They are gorgeous!!!

My first day back at work was a little strange but good. When you start to do something that six months ago you could do with your eyes closed and now the process is a little fuzzy it tends to be a little unnerving. I finally found all my cheat sheets and got a little more organized and so Thursday was a lot better. I am glad it was a short week however. It was good to see everyone and to feel welcomed back. On Wednesday morning I got up early and went for a walk before getting ready. After that late night anniversary dinner, Thursday morning did not include a walk, I slept instead. Come Friday morning -- let's just say it was a good thing Fridays are casual wear. I do believe Ken and I will have to work out something to where I am not going to the hospital after work every night. (Don't tell anyone, but I'm not as young as I use to be)

This weekend has been good. Josh, Melanie and Jack once again blessed us with coming and staying for the weekend. This one was extra special for Ken - There was a REUNION for Pops and Jack!!! With Ken being out of CCU and in a private room Jack got to visit. It was a much anticipated visit. Ken has seen plenty of pictures, but just ask any grandparent if that is ever enough. Jack came in wearing his Pops' Life Is Good cap to let him see he was taking good care of it. Pops told him "good job" and to hang onto it a little longer. Jack was so good. He just had a good time up on the bed looking at and talking to his Pops. I'll have to remember to bring the fishing game next time so the two can practice the fine art of holding the pole.

Ken has physical therapy at least six if not seven days a week and they are working to get him to stand up. One of the therapist brought in a machine that somehow attaches to Ken and with him holding on to some handles this machine raises him up and then puts him back down. He has not been up for more than a couple of seconds each time, 'but ya gotta start somewhere'. He has not had the swelling in his hands lately so I'm sure that was a large part of his being able to write. The swelling in his legs has also been less this past week. That is very encouraging - something is working, whether it is the amount of fluid removed during his dialysis treatments, his fluid restrictions, physical therapy and getting stronger with mobility or a combination of it all, we are happy to take the results.

My mom and dad will be here this coming week before heading back to Texas on Friday. It has been great having them here, not only for their company, but the help they have been both at the house and hospital. Ken will be having another heart biopsy done Tuesday and we are praying for the continued absence of rejection. I am sure at least one of my parents will be at the hospital waiting for him to get back to his room and that really helps to ease the anxiety that comes from knowing I will not be there.

If you would continue to pray for Ken's mental strength as well as physical that would be great. He is feeling better and so that starts to make being in the bed less appealing. He is ready to come home so that sometimes brings on a little more depression. We are trying to provide things that will keep his mind busy that he can maneuver by himself. It is not that simple to just read a book or work a puzzle. I need to get it where he can access those things more easily on his own and feel more independent. This will be my first full week back at work and would ask that you just pray I would find the balance between taking care of myself and still giving Ken the support he needs from me. My parents will leave Friday morning so please remember them as they drive back to Texas. Thank you once again for your continued love and support - God Bless You and have a Great Week!!