The music was blasting away in Janet’s room this morning when I arrived but she wasn’t there. I headed out to the dining area assuming she was waiting for breakfast. It took me a while to find her, she was sitting at a table with Nick and Gary but facing the wrong way and looking out the window crying. I couldn’t understand what she was saying when I asked her why she was crying but she calmed down pretty quick so I got her up to the table and breakfast arrived. She ate about half the yogurt and only a couple spoons full of pureed pear. We headed back to her room and I asked again why she was crying earlier. She said “nobody was paying attention to me”. I didn’t tell her it may have been because she was facing the wrong way. I just reminded her that Nick and Gary are both nice guys and she’s always one of the last to get her breakfast because it’s all cold. No more tears.

We started stretching and I managed to get her right arm fully extended with her hand open and she even let me raise it up a little bit. First time since Botox. The legs were super tight but I got the right one to a reasonable place and the left one I didn’t want to go to hard at. I thought it would be better just to get to Physio. I did have Janet try standing from the edge of the bed again and just before she did she looked at me kinda worried and said “maybe I need to go to the bathroom”. That was pretty exciting to hear so I rang for a nurse and helped get her into the Arjo and off to the toilet she went. She did not go but the fact she asked to is big. High five.

Because of the toilet episode we were a little late for Physio but I had told Moira so she was fine and had the Tilt Table all ready for Janet. I demonstrated the standing technique that I used on Janet yesterday and Moira agreed it was good for her as she gets more weight through her legs. Janet was very comfortable on the table and “stood” at ninety degrees for a good twenty minutes. Moira had her scanning the little table in front her and picking up objects from it to hand to her. This proved Janet can see despite what she said the other day. Moira wanted to get Janet on the elliptical bike but it was time to head for Speech so she invited Janet to come back after Speech to do that.

Connie started Janet on some oral motor exercises which Janet did very well at. Lots of different tongue and lip movements that Janet picked up on right away. She did well at pointing to different body parts but was getting tired/bored near the end when it was time for vocal exercises. Janet was quite talkative this morning overall and using her loud voice quite a bit.

I wheeled her back to Moira and said goodbye so I could take my car in to put the winter tires on. Janet started to cry and said “I don’t want you to go”. Often that would have prompted me to stay but I know she loves working with Moira and she knew Jessica was coming to get her afterwards and she likes her too so I left telling her that when I get back we’ll try and get out in the sunshine for a walk. She seemed fine with that.

Looking forward to a bright afternoon.

Wayne and Brenda were visiting Janet when I got back from a quick lunch break. Suzanne reported that Janet ate quite a bit of her lunch especially the yogurt and pureed fruit. Suzanne brought her some beautiful yellow roses that Janet enjoyed smelling and I think they had a nice time together. Wayne had not seen Janet for a few weeks and was impressed with her progress. No loud voice from Janet for anyone today but some decent whispers. Thanks for the visits everyone, it helps a lot.

Cam had requested a Skype call with his mom and Janet was pleased to see and hear him, even asking him “what’s going on with you?” That’s the first time I’ve gotten Janet to ask a question other than how are you. Cool. I know its hard talking to someone when they aren’t talking back to you but Janet really is engaged on these Skype calls and is getting more so. I think as long as we keep them to fifteen minutes maximum they are a huge benefit to her. Case in point. Later on we Skyped Laurel and near the end of that conversation Laurel said “I miss you mom”. Janet whispered back “I miss you too”. Laurel got a little teary when I told her that’s what her mom had said. Laurel pulled herself together quickly and ended the conversation a couple of minutes later and Janet smiled as she said goodbye. After we disconnected Janet’s next move was to turn to me and say “she started to cry”. I confirmed that and then Janet started to cry, which got me crying. After a couple minutes of talking about how much Janet is loved and missed she said “and Heather will too”, and started crying again. These are much better emotional outbursts than previous but are still hard to experience. I do feel this is yet another heightened level of awareness though so in the big picture its good.

After the Cam call I gave Janet a choice of things to do and she chose an inside walk with me driving. Since it is Sunday I honored her request, besides, I had given her a pretty good workout this morning in addition to all the visits she had. I was a little disappointed she didn’t want to go home and watch the Seahawks’ game though. Before the walk she made one of her best attempts at getting up from bed and I had her stand twice as well. She was a little unsure at first but once up she felt pretty good about herself. On our walk we toured the upper floors of the Centennial Building for the first time. Impressive. Janet did take on the challenge of driving the long hallway and did well for a Sunday afternoon. Back in her room before dinner we Skyped Laurel who reminded me that Janet would probably like to watch some NBA highlights now and then so we gave it a shot and she did enjoy them asking to watch more until we had seen five different clips. I can’t tell if OKC is still her team but probably.

At dinner we sat with Theresa and Luellen and Janet ate the yogurt, pureed fruit and tomato/pepper soup. Exciting huh? She was starting to fade rapidly during dinner so I got her to bed and started her tube feed and she was eyes closed immediately. I layed down with her for a while then said goodnight just before six to a sleepy but smiley Janet.

Praying for a night of rest and healing. Especially for her right shoulder and arm and also for increased flexibility for her whole body.

Janet was sitting at the window in her room looking out at me when I arrived this morning. She said she saw me but I didn’t get much of a reaction. She seemed to be in a pretty good mood as we headed off to breakfast. We sat with Edna and Janet gave her the occasional smile. Breakfast included the usual suspects with only the yogurt and pureed fruit worth repeating.

Janet got a little chatty after breakfast, whispers only, so stretching didn’t start until nine. Good thing it’s Sunday. Her nurse told me Janet complained of some pain in her right hand this morning so they gave her some Tylenol. Her arm and hand stretched out just fine with the fingers being a little hard to pry open but we got there. Her legs were all locked up as usual but after a lot of time and effort I got them to a reasonable place. Janet did a good job of trying to get up from bed and had the most movement I’ve seen from her right leg in a while. Not enough to get it over the edge but close. Janet seemed a little confused about the sitting exercises this morning but I know she is strong and can do them so I didn’t push too hard there. She had one melt down in which she told me she couldn’t see. This concerned me quite a bit so I talked to her a long time about it and kept trying to see if there was any difference in her eye movement. I didn’t notice anything and as far as I can tell she is tracking things and seeing things as normal for her. It could be she is aware enough to say something about it now. I’ll keep an eye on it. No pun intended. We tried standing once with me lifting her from her butt, it is so hard for me to hold her for any serious length of time, I don’t see the benefit. I tried the method where I hold her left elbow and right arm and she pushes up with her legs taking most of the weight and that worked really well with her clearing the bed by four or five inches all three times. I think this is best for her and will confirm with Moira tomorrow.

Time for some wheelchair exercises next and Janet impressed me and a few others this morning. She drove Bam Bam style all the way from her room to the elevator, down the hall and through the cafeteria then over to the Royal Building elevators with me only giving directions the whole way. I did help her through the cafeteria door and away from the wall a couple times but it was a very impressive display. Not ready to elevate her status fully yet but we’ll go Bam Bam Plus. I took her up to 4B and she Bam Bam’d her way through to the nurses station right up to Dr. Jones. He was pleasantly surprised and happy to see her and Janet gave him a big smile and a hand shake (a first). All the other nurses were thrilled to see Janet as well and I could tell she was happy but a little overwhelmed too.

By the time we got back to rehab it was nearly lunch time so we sat with Nick, Leo and Mary and waited. Janet seems to enjoy sitting at tables that have a lively conversation going and this one did. Suzanne surprised us while we were waiting for lunch and kindly agreed to stay and help Janet with her meal after I had gotten her started.

Looking forward to an afternoon full of progress.

Upon my return, Janet decided she wanted to come home for a visit, so after she was changed I got her up and into the car. For once we arrived ahead of schedule and had time to settle in before Skyping Leslie. Nash came out to greet Janet in the car and for the first time there was a mutual exchange of affection as Janet patted him right away and he licked her face. I sat Janet on the couch in family room to avoid having to throw the ball for Nash as it seems that is his only concern whenever I walk in the house now and it drives me nuts. With Janet on the couch he sat beside her right away and luxuriated in her pats.

Our call to Leslie was good with Janet saying a few things loud enough to be heard in Ontario and she gave a big smile to Leslie’s rendition of the Carol Burnett Show’s closing song. Bravo Leslie!

Since Janet can maneuver her wheelchair so well around the hospital I was curious to see how she could manage around the house. The family room and kitchen areas were pretty easy for her as was the hallway to the bedroom but she could not get into the kitchen from the hallway as that entrance is too tight as is the entrance to the main bathroom. She also had a lot of trouble moving her chair on the carpet in the bedroom. If she comes home in a wheelchair there maybe more reno’s needed than just accessibility ones. After that little workout I thought she deserved a treat so I offered her a choice of different flavored Tootsie Rolls. She choose cherry and loved it. We saw Barb and Gary outside as we headed for the car and Janet was truly excited. She used her loud voice for the first time all day saying “It’s nice to see you” and “It’s good to be home”. The most excited I’ve seen her to see anyone has been when we saw Sandrine at the beach and now Barb and Gary on our front walkway. I’m thinking it may be interesting to take Janet to see some of you Kelowna folks sometimes rather than you all coming to her at KGH. When she is out she is much much brighter and the surprise of seeing familiar faces is quite exciting. Thoughts?

We got back to rehab right on time for dinner and Janet chose to go to the dining area. We sat with Theresa but Janet wasn’t too interested in her. The food was not interesting either but she was OK with the Cream of Broccoli Soup and the Pureed Fruit which this time had a lot of peach in it. She had a little melt down twenty minutes in so I took her to her room as I couldn’t hear what she was trying to tell me. Turned out to be something about “Mom and Dad…” She was fine a few minutes later then I got her into bed and plugged into her tube feed and I took off to church.

Janet was very much awake when I got back at seven and was very chatty going on about “seven kids”. I told her we have seven kids and she would not believe me. I showed her the picture of all of us but Ashley and then asked her to name everyone without looking at the picture. She needed help with a few but did pretty good. I’m guessing Emma was in chatting with her while I was away and that’s how she got onto that topic. I read a chapter of Anne 2 to her and a few paragraphs in she started crying. She told me it was sad. It wasn’t. I explained the scene and how happy it sounded, she wasn’t totally convinced and low and behold on the very next page it was sad. I figure she knew what was coming from being familiar with the story. I’ve no other explanation.

I stretched her a little and got her changed for bed. She wasn’t looking all that sleepy but was OK with me saying goodnight. Praying for a fun day tomorrow.

It was a nice surprise to walk into Janet’s room this morning and find Emma helping her get dressed. We haven’t seen Emma for a while and she is just so much more attentive than most of the other nurses. She said Janet greeted her this morning and Nicole reported that Houdieno was in action overnight. Apparently the bed alarm went off around eleven and Nicole found Houdieno in a similar position as yesterday afternoon only this time she was crying instead of being cheeky. Janet was a little weepy with Emma earlier too and again just after I got in. She wouldn’t tell us why and settled down pretty quickly.

We went out to the dining area for breakfast and sat with Gail and Lenora who were very pleasant to Janet. She tried some of the same things as last night and only liked the mango yogurt and the pureed fruit. Breakfast has never been Janet’s best meal and she wasn’t totally awake so I didn’t push to hard to stay long or eat more. She tried a little of everything and that’s all we want right now.

Stretching was a challenge this morning as it took forever to get her legs into a reasonable position. Janet wasn’t happy either as she had to work hard with me to get a decent result. I’m OK with where we got to just not at all happy with how long it took and the trend seems to be heading in the wrong direction. The confusing part of it all is Janet seems to be gaining mobility in her left leg but it is getting harder and harder to stretch out. The good news from the marathon stretching routine is that at one point I stepped out to get some water and after I had been back for a few minutes Janet asked me where the water was. She apparently thought I was getting her some so I offered her a teaspoon and she drank three of them. Connie had given her water yesterday for the first time, this was a first for me.

Janet did very well with her sitting exercises and I managed to get her standing a few times, the last time with a pretty good stretch on her legs. The key there I found is to make sure her ankles are well stretched before hand. I can’t hold her for two minutes like I used to partly because of her stiff legs and partly because she is heavier now. Up a half kilo over last month.

I was incredibly impressed with her Bam Bam style driving this morning. She went from her room all the way down to the elevator, did a 180 and came back to her room with only a short pause in the dining area for a rest. All of that was done with me telling her some directions, I never touched the chair. She was working it pretty hard near the end but was determined to finish. Huge high five!

Vocal exercises were lacking a little bit this morning. Janet did well with the basic warm ups but told me she was sick of repeating the words I was giving her. I explained that if she says them loud and clear she never has to repeat them again. She tried some more but just doesn’t seem to have her voice yet today. We headed out for lunch and sat with Leo and Nick. Leo is a very chatty eighty four year old happy guy and Nick is the guy that just kind of laughs and agrees with everything. Janet seemed comfortable sitting with them and correctly answered Leo’s question “what’s your puppy’s name?” The lunch favorites were Cauliflower and Cheese Soup and thickened Apple Juice. We are starting to narrow the list.

I got Janet into bed for her lunch feed and came home briefly for mine. I asked her earlier about coming home for a visit and she said “I’ll think about it.” Looking forward to a fun afternoon.

Houdieno was in full action when I returned this afternoon.

This is how I found her and my first words were, “hey, what do you think you’re doing?” Her response in a loud whisper was, “what do you think I’m doing?” It was hard to stifle the laugh but when I explained that she could hurt herself if she fell and there was no one around to help she seemed to understand that. She also seemed to appreciate the fact she should use her loud voice more in case she needs to call for help. She told me “I don’t have a loud voice”. I told her she does and I’ve heard it many times and she’s been practicing with Connie and others. We discussed talking for a while and she went from “I don’t care about that” to “I’m using my loud voice” when she was actually whispering, to in full voice telling me “I noticed” when I reminded her I shaved my face for her last night. She had a huge smile as I told her how easy it was to hear that. I then got the nurses in so I could explain what is wrong with the picture of Houdieno. The head of the bed is too high, makes it real easy for Janet to sit up. The bed was not at its lowest level, makes the fall that much harder. The middle of the bed was too high, giving her extra leverage in getting her legs over the side. The bed alarm was not on, I’ve forgotten this one myself so a good reminder to all of us. Both nurses have not worked with Janet much and were quite surprised at the Houdieno move and took this all as a good lesson.

Janet remained anxious to get up so I let her try a few times with me watching and the bed flat. She came really close on the left side and made a strong effort on the right side and did not seem to mind leaning on her right shoulder. Things may be improving there. We tried one stand up from sitting and considering I hadn’t stretched her before hand it was a pretty good attempt. Jessica arrived then to show Amy how to use the Arjo to get Janet to the toilet. I stayed and watched this time and was impressed by Janet’s fearlessness. When she was up she looked like she was ready for skiing Big White and said she was good to go. The girls plunked her on the toilet, turned a little water on and left her alone for a few minutes. To everyone’s surprise, Janet peed! First time in five and a half months and she was actually pretty happy with herself. She was giving a little brush off kind of grin but I could see happiness behind it. High five big girl!

It was so nice and mild outside I figured we better take advantage of it so out we went to enjoy a nice Fall stroll. I made the mistake of treating it like a school field trip at first. I asked Janet the colors of a few flowers and then leaves on some trees. After the fifth question she scowled at me and said “I’m tired of you asking me”. Right then. For the rest of the walk I did a commentary instead, pointing out the pretty yellow trees and brilliant red ones just like the one in our yard. That seemed to work as she agreed with my observations and hopefully she was remembering the colors and other info I was putting out there. We went down one new street to us, the aptly named Maple St. Absolutely stunning! Huge maples on both sides with all the leaves bright yellow. It was like being in a leaf tunnel with this really cool yellow light. Would have taken a picture but not convinced I could have done it justice. We came to a fork in the road and I asked Janet how she was doing, she said “I want to go home”. I took that to mean her room, and she nodded, so back we went. With a few minutes to wait before dinner we chatted in her room. She was quite talkative and I showed her a picture that her stepmom Joan sent for her and asked her who it was. She happily said out loud “my big dad”. A little while later she was looking all around the room and started crying and managed to say “I want to go to my room”. I explained we were in her room then I asked her if she meant our room at home. She cried “yes”. My heart sank a little but I promised to take her there for a visit tomorrow and she seemed good with that.

We made our way to the dining area with feed pump and all and sat with Gail and a couple of other ladies who weren’t as impressed that we were there as Gail was. Janet got Thickened Lemon Water, Thickened Cranberry Juice, Thickened Strawberry Ensure, Apple Sauce and Cream of Carrot Soup. She liked the soup, yay! Didn’t care for anything else but tolerated the Ensure and the Apple Sauce. I explained she would have to keep trying a whole bunch of things in order to find a few things she likes. She surprised me by wanting to stay out in the dining area for about an hour. Thought she would want to bail at the first chance but she was enjoying the buzz of activity.

The last half hour of her dinner feed was spent in bed with me reading Anne 2 and her listening with her eyes closed. She dutifully brushed her teeth and tolerated me stretching her a little. So far I’m not really impressed with the splint. It is holding her wrist nicely but it seems as though she is clenching her hand more now. We’ll see how it goes over the weekend. Janet was really close to sleep as I said goodnight and reminded her I will see her for breakfast in the morning.

Praying for a restful night and an active and fun day tomorrow.

Jessica was working with Janet when I arrived this morning getting her to dress and wash herself as much as possible. Janet was pretty sleepy but gave a reasonable effort. Connie stopped by to confirm the breakfast menu. Janet does not get much of a choice seeing as all her food is pureed so I said bring a little of everything and she can try it all. As soon as Janet was dressed I got her into the wheelchair and out to the dining area. Tom, the Physiotherapist responsible in many ways for getting Janet into rehab was there and stopped us to say hi. I had seen him at the bike rack earlier and mentioned Janet was having her first breakfast so I think he made a point of coming to see her. Janet was still a little groggy but after a minute or so of Tom talking to her she lit right up and gave him a big smile and a “hi Tom”. Good guy.

We had to sit Janet at a table on her own as she was late getting out of her room this morning and that was probably good for the first time as Connie was there as well as Moira and Janet doesn’t like a lot of people staring at her. Her tray came with a vanilla yogurt, mango yogurt, porridge, thickened coffee flavored Ensure, thickened apple juice and thickened lemon water. The two yogurts and the apple juice seemed ok with a slight edge going to the vanilla yogurt. The porridge was a definite no go and the lemon water got no reaction at all. The coffee Ensure was maybe worth one more try on another day. She swallowed well and Connie had her vocalizing from time to time to make sure her throat was clearing. All went well from that perspective. I asked nursing to keep with our current practice for lunch. Janet will be put to bed for a rest after her therapy sessions, plugged in for her tube feed and the nurses will give her little bits of everything that comes on her lunch tray which I’m told today will include some thickened vegetable soup. Dinner we will do in the dining area along with her tube feed and on the days when Jessica is not helping Janet get up in the morning the nurses will get her out to the dining area in time for breakfast.

With eating complete we headed back to her room so I could stretch her before physio. Her splint seems to be holding her wrist in a nice position but I found when I went to straighten her forearm it no longer rotates like it does without the splint and that caused some pain in Janet’s right shoulder. She was very good about telling me where it hurt and what made it feel better. I asked her if it was better to push up or down on it and she said down. I did and she said it was better. High five for good communication. From now on the splint will be off for stretching. I hurt her again though as I was pushing down on her left knee and thinking about the rest of the day I pushed too hard and she started crying. That time it was a silent cry and I told her she could have used her loud voice and I would have noticed sooner.

I got her down to the gym and told Moira about the arm, shoulder and leg. She was going to stand Janet up using the ceiling lift and sling at the parallel bars. Janet seemed excited. On my way out I mentioned the arm and shoulder thing to Jessica so that she knows pushing down on Janet’s shoulder brought relief.

Praying for continued progress today and thanking Jesus for all the good people caring for Janet.

When I returned this afternoon Janet was close to finishing her lunch feed and the nurses were hovering wanting to get her ready to go to her swallow X-ray. With me there she was allowed to relax and finish lunch and I transferred her to the stretcher once the Porter arrived. I wasn’t allowed to stay in the room during the X-ray but I got Janet into the “electric” chair and sat just outside the door so I could hear what was happening. Connie was her usual enthusiastic self and later reported that Janet did well. There were no issues with aspiration or choking. Her swallowing rate varied from 3.5 to 22.3 seconds which Connie seemed pleased with, and not surprised by, considering the amount and variety of “food” she had to eat. Janet did use some secondary swallows to completely clear her mouth and there was a little residue in her throat which apparently indicates things aren’t working quite as fast as they should be. With all that said, Janet is now allowed to eat some real food such as yogurt, pudding, pureed fruit, or anything else that is pureed. She can even drink some water from a spoon. Connie noted that Janet swallowed better when she took all the “food” from a spoon instead of just a portion of it. Connie will meet Janet at breakfast time tomorrow morning in the dining area and help her eat some breakfast. For now the tube feeds will continue but once Janet is settled into the real food, the tube feed quantity will be reduced accordingly. Connie will now work harder with Janet on chewing and tongue movement to improve her ability to eat. This is a big step.

Janet surprised me afterwards by electing to go into the wheelchair rather than back to bed. She didn’t know what she wanted to do so I got her dressed up warm and we went out for some fresh air. As we were sitting at the beach a few unforcasted rain drops started falling so we headed inside and walked around the all too familiar hallways for a while. We chatted with Moira who told me Janet did well in the Arjo machine this morning but didn’t go pee. I didn’t think she would but the standing up to get to the bathroom is good for her.

Jessica had arranged to meet us back in Janet’s room to discuss a fancy splint she has put on Janet’s right arm. The concern is the positioning of her wrist and this splint does hold it in a nice neutral position and since it’s soft Janet seems to tolerate it well. Jessica recommends leaving it on most of the time except for when in PT or OT. She also tried out a couple of weird contraptions that would keep the fingers on Janet’s right hand open and spread apart but neither model fit Janet very well at all so we are sticking with the rolled up face cloth for now. We also discussed Janet’s positioning in bed and what might be done to keep her legs straighter. Jessica was glad that she could see Janet with the bed at various heights and angles and can now better pursue a solution.

As Janet and I were chatting afterwards we noticed the sun had come out and we thought we’d run out and catch some of it before Brenda’s scheduled visit. Brenda met us at the door and joined us for the three or four minutes the clouds let us have. Felt good. I asked Brenda to do some vocal exercises with Janet as she had been rather quiet today. Brenda later said Janet had done well and even sang along with her. I walked in at one point to a duet of the Happy Birthday Song. Nice. Janet seemed to really enjoy the visit and surprised me by staying awake the whole time as once again she did not nap today. She gave Brenda a nice smile as she left then motioned for me to lay on the bed with her. She shut her eyes almost immediately but not to sleep just to rest. She definitely was winding down though and as her dinner finished I cut the finger nails on her right hand so they don’t dig into her palm when she is clenching, gave her right arm a stretch and got a really good stretch on her legs. I said goodnight after a very busy and successful day for Janet.

Praying for a restful night and a great day of eating tomorrow.

My greeting this morning was underwhelming as I got kind of a half smile and a turn away of the head. When I arrived Janet was still on the shower chair getting dried off and dressed. She was cold so maybe that was why I got the lame greeting.

I let her warm up in bed before starting stretching and she seemed pretty sleepy and out of it but I started anyways. The right arm seems to be looser still, not enough to try the shoulder yet though. I was quite concerned about her legs this morning but in the end they straightened out surprisingly well. Moira stopped by to say she was going to do most of today’s session in Janet’s room. She had talked to the nurses and Jessica about Janet’s negative experience on the commode yesterday and wanted to try a machine that will allow Janet to stand and be moved into the bathroom to sit on the toilet. I thought it was worth a try as Janet loves to stand. Not sure about sitting on the toilet but it’s probably better than in the middle of the room on a commode. Connie dropped by as well and she got a nice smile from Janet and lots of loud voice responding. She reminded Janet of the swallowing X-ray this afternoon and seems rather excited about it.

I invited Janet to get up out of bed and the first attempt was to the right side and that hurt her shoulder so back to the left she went. Once up, she did a good job brushing her teeth and was clearly starting wake up more.

Janet sure relates well to all her therapists and was all set to go when Moira and Jessica arrived to try the standing machine to get her into the bathroom. I’m really glad she likes working with them and because of that I left the three of them to do their thing despite me really wanting to see Janet stand in this contraption. I got a nice smile and a kiss as I said goodbye.

Praying for a successful swallow X-ray and an active afternoon.