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!