When I returned to KGH this afternoon I was surprised that Janet was not in bed and especially surprised she was not in her room. I figured she must be with Jessica trying out new wheelchairs so I got changed and went searching. I saw Jessica immediately but she was working with another lady and was too busy to interrupt. I got down to the dining area and there was Janet sitting at the head of her usual table “reading” some magazines. We smiled at each other and exchanged the usual what are you doing, what do you think I’m doing questions and Janet simply said, “I’m waiting for you to get here”. Nurse Robyn stopped by to tell me that Janet was late getting to lunch because Jessica had her trying a new wheelchair. She had lunch but by the time she was finished it was one o’clock. Robyn tried putting Janet to bed but she did not want to go. She finally agreed but five minutes later she set the bed alarm off as she was in full Houdieno mode. Robyn decided then to just get her back up in the wheelchair and put her somewhere they could see her until I got back. Janet was quite happy and perhaps a little pleased she had achieved her goal of not napping but I warned her it would not be good for her later.

Janet was very talkative and loud for the first twenty minutes or so of my arrival then started to fade. I insisted she try and go to the bathroom before we did anything and that turned out to be a good call. By the time she was done there was not enough time to go anywhere before Jessica came by with another new wheelchair so we got ready to Skype Heather. As we were waiting, Mary/Gaga Skyped us. Janet was fairly quiet during the call as the effects of her not napping were starting to kick in. She managed a few loud whispers and also threw her mom and Keith a couple of kisses at the end.

Jessica arrived with the wheelchair she wants to try Janet out in. It’s basically the same frame as her current one with some seat, back and footrest modifications and the whole chair is an inch higher than current. We went for a spin around the unit with me trying to race Janet in the old chair but I could tell she was adjusting to the different position she was in and she was tired so a race would not have been fair. I’m not really impressed with this wheelchair but will give it more time. Jessica hopes to have the one she feels is best, ready for a test drive next week.

After our test drive we were able to Skype Heather and again, Janet was fairly quiet but really trying to talk and is excited Heather will be here in about a week. I showed Janet some pictures of Connect from their blog and read a little to her from their website. I’m not sensing any stress from her on the pending move and have arranged to take her out there for a visit tomorrow afternoon.

Dinner was not that great tonight as Janet was noticeably tired, the soup was too thin so she coughed quite a bit, there were two servings of Ensure, a portion of butter and a banana cream pudding on the tray despite my complaint about that sort of thing earlier in the afternoon. The ‘nutritionist” agreed the pudding is useless other than for added calories, the butter is a waste and the Ensure should not be doubled. Maybe it was too late to change it for dinner today but this is really starting to get to me. Food will be top of my list at Connect tomorrow.

I got Janet into bed right after dinner and we read a little Anne 2. That was really nice as we haven’t done that for a long time. I stretched her legs a little bit but took it easy on her as she had her eyes closed pretty much as soon as I started. Praying for a restful night that brings full healing to her legs and right arm.

When I arrived this morning, Janet was sitting at the breakfast table waiting for me. She said she was doing awful and when I asked why she repeatedly said she “had a bowel”. I told her that’s a good thing but then it became apparent that the whole getting up routine was difficult for her. The nurse that helped her this morning came by and casually told me that Janet’s right shoulder is really stiff and it hurts her when you move it and she had a little cry. Duh! This nurse has worked with Janet before and Janet has been in rehab with a sore shoulder for three months now. I don’t think it was a toileting issue that got Janet upset this morning it was a careless nurse that hurt her a little and didn’t do anything to remedy it.

Towards the end of breakfast Janet got a little upset and was very serious about telling me about someone’s eyes. I thought she was saying someone has pretty eyes and I told her she did. Of course she didn’t believe me then I realized she didn’t have her glasses on and that’s what she was trying to tell me. With the nurses getting her up and out of the room I never even thought of the glasses. She was very happy to put them on and I showed her in a mirror how pretty her eyes are. She wasn’t totally buying it but she smiled at least. We were done breakfast before nine, mostly because Janet only ate her yogurt and prune whip. I took advantage of the time to stretch her ankles, legs, right arm and back while she sat on the edge of the bed before we went to the gym. No changes in anything and considering the range I got from her right arm, that nurse must really have heaved on it to get Janet to cry. At the gym I talked to Moira about the goal of walking one day and should we get Janet standing etc. as much as possible. She explained that although Janet has the desire to stand and walk she can only initiate that first push from a sitting position. She has virtually no weight bearing capabilities from a standing position at all. Moira feels Janet is fighting the tone in her legs and that is impeding her muscle control and unless that tone diminishes it’s unlikely Janet will be able to walk. That’s Moira’s take on it and she will bring the issue up in Rounds this morning and I will try and speak with Dr. McCann about it this week as well. No one is giving up yet but since I asked that’s the feedback I got. Moira planned on doing some deep kneeling with Janet this morning as a way of helping Janet get to a standing position.

Looking forward to an active and happy afternoon.

I arrived at Janet’s room this afternoon to find her resting in bed for once. She opened her eyes as soon as I walked in and gave me a big smile then talked in a loud voice like never before for a good twenty minutes. Very exciting. I gave her a few options of things to do and she chose to go to the mall. I was still looking for new ski gloves and didn’t think it would be too busy on a Monday afternoon so away we went.

The mall was quite tolerable and we toured around the whole place with Janet seeming quite content the whole time and really observing. In talking to her on this trip it seems like her memories of the mall are coming back a little as she did seem to recognize a few things from the past and she knew where she bought a present for me last year. We struck out on the ski gloves though so we headed over to the ski shop where I got my jacket and pants and found some nice ones there. Again, Janet seemed content to be looking around that brand new store. Kelowna people; I highly recommend it. One Board Shop, and it’s not at the mall!

We got back to KGH in time to be second at the dinner table. Sharon was first as always, then Jean and a new lady, Bev, joined. Janet ate all her soup and fruit in record time and with the least amount of spillage yet. The time saved at dinner allowed us to Skype Laurel and Raj and then have a voice call with Andrew. Janet was reasonably talkative with all and the conversations were more actual conversations than ever before with Janet trying hard to put sentences together instead of just one or two words. I am really encouraged by her communication today. This is probably the loudest she has talked and certainly the most conversationally she’s talked since this all started.

Once again she faded rapidly though and after a goodnight stretch she was very much ready for sleep despite still talking to me in a loud voice. Big smiles!

Praying for continued healing and another day tomorrow as positive as today.

It’s getting to be pretty nice arriving at rehab in the mornings and finding Janet dressed and at the breakfast table. She greeted me with a big smile and was quite happy to be up and getting on with the day. For some reason her breakfast tray came with a cup of apple juice on it. We both laughed at how ridiculous the food service is. Each item the computer spit out on her menu was scribbled out with something else hand written in but she still got apple juice and a portion of butter. ???

Edna and Sharon were at the breakfast table with us and Edna put on a nice walking exhibition. She is doing really well. Janet Bam Bam’d her way back to her room for what I thought would be a little stretch before Physio but by the time I gave her her water and she brushed her teeth and then we changed her shirt after she slobbered toothpaste all over it and then finally brushed her hair, it was time to go. She had a big grin on her face the whole way to the gym and did a good job lifting some weights before Moira and Robyn came over to get her started. I mentioned the tone in Janet’s legs and got a sense that Moira is as perplexed about it as I am. She basically said we should talk to Dr. McCann about it and about the goals moving on to Connect. Her plan for the morning was for Janet to stand at the parallel bars then do some biking. I stayed for the standing part and was impressed at Janet’s eagerness to stand and her comfort and calmness when she was up. She was able to stand quite straight and relax her left arm instead of leaning on it for support like she used to. Her heels were almost touching the surface of the wedge she was standing on and her right arm was very relaxed. Moira still takes 90% of the weight but we all were pleased with how well Janet did especially in getting that initial push off herself. The desire to stand and hopefully walk is still there for Janet and I think I’m going to ask Dr. McCann if we can make a full on effort to get her there with the time remaining at KGH. I don’t know if the tone issue is beatable but seems to me the more Janet uses something the better it gets and seeing her be a very willing participant in standing this morning tells me we really need to go after this rather than waiting for something to happen.

Janet was in a great mood this morning with lots of talking and smiling and a willingness to be active. Praying for an active afternoon.

Janet did not or could not take advantage of her opportunity to rest this afternoon. Minutes after I published today’s first update she was complaining to me about not being able to sleep and being uncomfortable. I decided to get her back to her room at rehab thinking the familiarity would be good and that bed is adjustable so maybe she could get comfy there. As soon as I got her into her bed she affirmed she was feeling better and was comfy. She closed her eyes and rested right up until dinner time.

I wasn’t sure she would get up for dinner but her nurse came in and changed her and that seemed to give her a little energy as she immediately started getting up and almost made it all the way herself. She did say once she was up, “that hurt”. When I asked what hurt, she indicated her left hip area so I stretched her legs a little while she sat on the edge of the bed. That seemed to help and she slid easily into the wheelchair and off to dinner we went. Mary was sick today and Sharon and Barb were still out so it was just us and Edna. Janet ate surprisingly well but was still looking tired and when she was done there was no interest in lingering as she took off for her room right away. I took advantage of her low energy to clean and paint her finger nails Christmas red and green then it was off to bed where she was very much ready for sleep. I told her we would not be combining adventures like we did today ever again as she really needs that rest after lunch. She gave me the rolling eyes raised eye brows look but I insisted and I think she understands.

Today was an improved swallowing day and talking day despite the afternoon lull. She was loud and clear in short bursts throughout the day but then would have long periods of no talking at all, especially from dinner onwards. No surprise there really. I was happy with the movement in her legs as far as trying to get out of bed goes but am still concerned about the tone in both of them. Janet seems to be more protective of her right arm today. I went a little fast taking off her jacket this morning and pulled too much so she may have been thinking about that each time I went near it. I hope so because otherwise I think her arm is quite relaxed. I actually got her right hand up on the desk to paint her nails. Progress.

Thankful we were able to attend church together today and praying for a restful night that brings healing to Janet’s legs and restoration of her ability to eat “real food” and speak loud and clear.

Once again Janet was dressed and in her wheelchair as I arrived this morning. She greeted me with her big smile and was a little excited it was snowing outside. Breakfast was over in a hurry with Janet eating all her yogurt and prune whip but nothing else. That gave us plenty of time to stretch before going to church.

For the first time in a while I was able to do a full workout on her. We started with her sitting on the edge of the bed for some ankle stretching and that went very well. Next was upper body and back. Her right arm was nice and relaxed but her hand was a little tight. I managed to get some good flexibility in her shoulders and got her back nice and straight. Her legs continue to be very tight to start and I’m going to try and get some clarity on this from the team this week. All in all it was a good stretch and I could tell she was more comfortable afterwards.

Despite Janet insisting she did not have to go to the bathroom I insisted she try and good thing I did. We arrived at Trinity in plenty of time to make sure we got the seats we scoped out yesterday. Turned out to be perfect sight lines for Janet and she really enjoyed the music that took up the first half of the service. She even sang along to The Carol of the Drummer. It was great to have Janet at church and she enjoyed it enough to agree to come back next week to hear Greg Sczebel.

We got back to rehab about 12:45 and Janet said she wanted to have lunch there rather than home but when we got all settled at the table she refused to eat and started crying. Turns out she wanted to come home so we did. This time I got all of our food ready and the dog settled before I started helping Janet eat. She fed herself a lot this time. Messy but good she did it. We watched some of the Seahawks game then Janet got a little uncomfortable so is now resting in bed beside me as I write this. I guess she’s not resting too much though as she started laughing when she saw me with my glasses on. As long as she’s happy.

Janet and I hung out at home till after four then headed back to KGH for dinner. The visit home was quite pleasant. Janet spent a good amount of time exploring, mostly in the kitchen but she also made her way to the front window which is a nice feature of the new family room layout. I quizzed her on the names of some of the objects in the various rooms and was surprised at how many she didn’t know. She’ll have to keep working on that in OT. Janet made a very astute observation without any prompting at all, saying, “it’s hard to get through here. Does it have to be like this”? She was referring to the opening from the kitchen to the hallway and she was stuck in it at the time. For what it’s worth we made a pact after that. We will stay in this house as long as she is at Connect or starts to walk again. If she’s going to be in a wheelchair long term, we will find a house more suitable for a wheelchair.

We arrived back at rehab in time for dinner and Janet ate all of her soup and yogurt. We went for a little inside walk afterwards as Janet had some energy still. I guess because she actually had an afternoon nap. We got to the cafeteria area and she had a little melt down. This one was some of the old Janet I have not seen since this all started. Janet used to go through seasons where her confidence would get a little low and she would even question why I married her. She was talking a little of that subject this evening but I was able to quash it pretty fast. In a way I’m glad to see some of this old Janet but am really glad the new Janet is easily distracted. I’ll mention this one to Dr. Miller just so he knows.

I gave Janet a good stretch after her evening potty break and before I was finished she was eyes closed.

Praying for a restful and healing night and a successful trip to church tomorrow.

Janet was up and in her chair waiting for me again this morning. She said, “they told me you were coming” in a loud voice and had lots of smiles. She was a little upset about some toileting issue but I couldn’t understand it all.

Breakfast went well with Mary, Edna and Jean. Janet was quiet smiley and really listening to the conversation especially when they were talking about her. With a little nurse help I got her dressed up enough to head for the mall and we were there by 9:45 on a beautiful sunny morning. The parking lot was already getting busy so good thing we were there early. By the time I got around to her side of the car Janet had her seatbelt undone and the door open. She was twisting herself in her seat to get ready to shop! Our first and only real stop was Purdy’s for some happy face lolly pops so we were actually finished shopping in ten minutes and Janet surprised me by not really wanting to go anywhere else. I asked her if she’d help me look for new ski gloves and she thought that would be OK. We went to a few different stores along the way and in one of them I said to her “how do I tell what a good glove is”? She said, “ask”. Pretty smart she is. Janet and I both thought it ridiculous that some parents had their kids in line to see Santa at 10:20 when he didn’t even open for business until eleven. We exited before eleven surprisingly. A cheap date she is.

On the way back to KGH I decided to stop at church to scope out a sitting spot for tomorrow. We surprised Joel as he arrived to begin his work day and we were able to distract Dave from his drama rehearsal and we found a good place to sit. A successful mission.

With nothing else planned for the day Janet agreed to come home for lunch. Kiko was already at the hospital so we had a nice little visit with her while we waited for the lunch trays to arrive. Janet had told Joel earlier that “Meagan” made the lap blanket Kiko gave her. I’m not sure who Meagan is but when I reminded Janet later that it was Kiko she said “I wish I would have remembered”. Amy packed Janet’s lunch in a bag for us and we headed home. I thought we would sit and eat at the table together but once I got Janet set up it was hard to leave her to eat on her own so I made sure she finished her lunch before I got mine going. I’ll have to work on that timing. We watched a little So You Think You Can Dance and Janet fairly critiqued a few of the performances. She started to get uncomfortable around 1:30 so I insisted she lay down for a bit. She was more cooperative since it was her own bed. I made the mistake of laying down with her for what I thought would be a few minutes but turned out to be many, hence the late update. Janet actually slept for a little bit and we talked for a nice while too with no pressure to rush off somewhere.

Janet is exploring the house now and approves of my latest rearranging of the family room so it may stay this way for Christmas.

When I got back to Janet’s room this afternoon she was sitting in her wheelchair between the window and her bed. She gave me a nice smile and a big loud “hi” then I asked her what she was doing. She said, “I was waiting for you to come home”. All I could do was smile and say “I’m here”. Everyday there seems to be more and more of this brilliant communication from her. Awesome. On the flip side, the reason she was waiting for me in her wheelchair was she twice refused the nurses suggestion that she lay down and rest for a bit after lunch. Diane said they really tried but she wasn’t having anything to do with that idea and they didn’t want to force her. Good call.

I got changed from my cycling gear and we had a little chat then watched some YouTube. After the third video Janet asked to go to the bathroom. She’s getting better and better at this too! I saw Connie in the hallway and she gave me the run down on the lunch Janet had. Apparently she didn’t much care for the pureed beef stew and even Connie thought it looked unappealing. There is still some concern about Janet’s swallowing and until that gets better Connie is reluctant to change the diet. We will try another pureed entre next Thursday and Friday just to see if there is something Janet will like better. I asked that we try at dinner so I can feed her and Connie agreed. Her Speech session went well with lots of loud voice action and some good self spoken sentences from Janet. Bea dropped by Janet’s room to say goodbye as she was discharged today. Janet gave her a happy face lollypop and Bea pointed out the smile and said it was just like Janet.

Janet went on an exploratory adventure before dinner, we saw Jessica so I was able to ask about the wheelchair. Once again the model she wants to really try was not available today so they tried one similar but Janet was very quick to say it was uncomfortable. Jessica will keep working and once she get’s two comparable models I will take them for a test drive before any final decision is made. The best part about our visit with Jessica was the plate of chocolate chip cookies her and Janet made in their session today. They smell better than they taste but it is pretty cool they made them and Janet seemed quite excited and was happy to give one to Rob who always seems to be lurking about, especially where there is food. After all the cookie excitement I decided to have Janet restart her exploration from her room and she made her way down to the outpatient gym, doing a complete circumnavigation. She tired out ten minutes later so I drove down to the main lobby and started to go to the cancer centre but when I mentioned Christmas decorations Janet said “I don’t care about Christmas decorations”. There’s that attitude again. We went back to her room and I had her try to type things on the iPad. I don’t think her vision is good enough yet but we’ll keep trying as she was not opposed to making an effort.

Dinner was a quiet one with a lot of people gone for the weekend. Janet ate all her soup but nothing else and was fading rapidly. She was happy to go back to her room, have a potty break and get into bed, even with me telling her I was going to stretch her legs for a while. I barely got started and she was eyes shut. The tone in her legs has not diminished at all but with time I was able to get decent results on both legs. Of course by the time I was finished stretching her she popped her eyes open with a big smile that made it very hard to leave her but since she didn’t rest all day I told her she needed to get lots of sleep tonight as I plan on taking her to the mall in the morning. That seemed to motivate her to let me say goodnight.

Praying for continued healing and progress, especially for her legs, right arm and hand as well as her speech.

When I arrived this morning, a little before eight, Janet was already sitting at the breakfast table with Sharon waiting for her tray. She acknowledged she was up early and said she slept well. That is a first as usually when asked how she slept the answer is “terrible”. Things continue to get better. Janet thought it was fun to say good morning to everyone as they arrived at the table as usually she’s the last one there. She ate all her yogurt and prune whip and some of the Ensure and applesauce.

Connie stopped by the table to tell me Janet had chosen to try the beef stew for lunch today in a pureed form and she will be there to help and see how she does with it. Janet has been improving as far as her eating abilities go but still gets into a mode where she drools a lot and that is preventing her from advancing up the menu. I told Connie that the dinner time soups have been much thicker than typical and Janet has been doing quite well with them. A good sign.

Moira stopped by the table to tell Janet that her and Jessica would be recording some video of her sessions this morning to present to the IH board regarding her application to Connect. Janet said that would be fine and I promised to have her hair looking nice.

After Janet had finished eating I gave her the last call for the things left on the tray and she shook her head no for each one. I told her she could talk to me instead of shaking her head, she said “no” then said “I have to go to the bathroom”. Beautiful! Amy and Diane helped her through a successful potty break. I made sure her hair was looking good then we headed off to the gym. Janet always denied any real competitiveness prior to becoming sick but deep down I know she liked to be good at things. Today on the way to the gym she passed Mary half way down the hallway and smiled afterwards in a way that said to me “that felt good to blow past her like that”. Just an observation.

Janet was pleased to be at the gym even though she said “I don’t have the energy to play”. I assured her she would get that energy once she got moving. Looking forward to an energetic and bright afternoon.