A very smiley Janet greeted me this morning as Amy was finishing getting her dressed for the day. No tears and some pretty bright eyes made a nice start to the day. Janet drove Bam Bam style to the breakfast table where we sat with Barb, Leo, Alice, Bea and Judy. Leo started a bit of a handshake war as when everyone saw Janet grab his hand and smile they all wanted one from her too and it’s hard to reach everyone from a wheelchair but we managed all except Alice who was at the other end of the table.

Breakfast was a little slow arriving but did have the correct items on the tray and Janet polished off the yogurt and Ensure and had a little bit of the apple sauce. No coughing but some delayed swallowing. Nice to see her eat a good breakfast. It was well after nine by the time she was done though so I let her drive straight down to the gym after stopping by her room for her water. She only made one wrong turn along the way and of course we got there early as Moira and Robyn were in Rounds with Dr. McCann and the rest of the team this morning. I had Janet lift some weights to get warmed up and had her do two sets of ten for the eight, nine and ten pound weights. On the second set for the eight pounder she tried quite hard to put that weight in her right hand. I let her try for a few minutes thinking that the feel of it there and the thinking about it may help rewire something in her brain. She didn’t seem upset that it wouldn’t go and switched to her left after a few minutes. We played catch with an eight inch ball until Moira and Robyn arrived to put Janet on the tilt table.

Moira said there was no change of course coming out of Rounds and Janet’s name will be put forward to the board of Connect at the next review which is sometime in early December. I know she’s going to go there one day fairly soon but I still don’t feel ready for that yet despite the fact her progress is certainly not accelerating like it would have to to stay at KGH. Janet does seem to be in very good spirits today so far and I pray that continues.

I arrived to a crying Janet again this afternoon. No idea why she burst into tears moments after I walked into her room. She was concerned about something though as she tried telling me after she calmed down but I couldn’t understand what she was saying. I gave her a choice of things to do this afternoon, go home, to the mall or stay there. After about forty five minutes of humming and haahing and talking about other stuff she decided on, go home. I was not convinced that’s what she wanted as for quite a while before that she was just repeating all three options to me. When I got her into the car I asked her again where she wanted to go and she said, the mall. I think I deserve some praise for even suggesting that but I did think a complete change of environment would be good and I am willing to slum it for an hour.

We got inside and Janet’s face lit right up. The first thing she really noticed was a Christmas display outside of SportCheck and she was just beaming looking at it. That was worth the trip right there but we had just started our tour. The next point of interest was Rocky Mountain Chocolate Factory and she honestly seemed to remember those chocolate covered blueberries. I made a point of reminding her to get better at swallowing so she can eat stuff like that again. I hope it sank in. I drove for the most part as Janet was pretty distracted by all there is to look at. I did actually do a little shopping and it was fun watching Janet “help” me pick a couple things out. One of the stores I bought something in was The Bay (I’m really starting to lose it) and Janet drove herself around the cosmetics area from the men’s department but was still pretty distracted. After completing one lap of the mall it was time to head back to KGH. We stopped to do up Janet’s jacket and she went into a similar coughing/choking fit that she had the other day. This one was not as long but was just as scary. I had my phone out to call for help when she settled down and clearly was going to be alright. I asked her what happened and for the first time all day she was talking to me in a loud voice. She spoke Klingon but it was loud. I made it clear I was scared and a little mad at her because this seems to be caused by her not swallowing often enough and she just kind of laughed as if it was no big deal. I talked to Amy as soon as we got back and she said she had a talk with Connie about the previous incident and Connie is confident it is from secretions so Janet is allowed to continue eating but nothing more solid until she stops doing this.

Janet ate all her soup at lunch and dinner as well as good amounts of all the other items. I see progress being made as far as quantity and even variety but not in speed or her willingness to help herself. Slowly but surely just like everything else I guess.

The rest of the night was spent chatting and getting ready for bed which included a little stretch of the legs. Praying for a restful and healing night and lots of progress tomorrow.

Amy was dressing a teary Janet as I arrived this morning. No apparent reason why she was crying and she stayed weepy until we sat her up and got her shirt on. Once she was in the wheelchair she seemed reasonably happy to go for breakfast but it was just Mary and a new guy that had already finished his at the table so things were a little quiet at first. Janet’s tray came with acceptable items on it and she ate a decent amount for her. Connie stopped by to see how the weekend went as she was concerned about Janet’s coughing. I didn’t notice anything unusual over the weekend other than delayed swallowing. The diet will remain as is for now and Connie made Janet a mocha coffee to try this morning and she seemed to think it was OK. We would have to make that ourselves in the future if Janet wants and its good to know she can have it if she’s not grooven on anything else.

Because Janet took so long to eat our stretching time was limited so I focused on the legs. They were quite tight and springy this morning but ended up reasonably straight by the time we had to leave for Physio. Janet had one little crying spell when we got back to her room but by the time she was in the wheelchair again and I said let’s go to the gym she was off like a rocket. For some reason she was drifting off to the left more than the right this morning but her Bam Bam skills are still improving. I gave Moira and Robyn the weekend update and Moira spent a good fifteen minutes working Janet’s right arm and shoulder and was able to range it very nicely. They then had Janet stand up at the parallel bars. Janet was a little nervous the first attempt but stayed up for five minutes or so and on the second try was much more comfortable and able to release her death grip on the bar and use her left arm to give me a high five and wave at Moira who also worked on her right arm a lot while Janet was standing and got it into almost an identical resting position as the left one. After almost fifteen minutes of very nice standing Janet was let down and off to Speech we went.

I had stayed with Janet this morning as I was a little concerned about the crying but as the morning wore on and she got more active she brightened up and cheered up and as soon as I heard her loud voice with Connie I knew I could leave them to do their thing.

Looking forward to an active afternoon.

When I returned, Suzanne and Janet were about to read some of Anne 2 but I walked up to the window from the outside to see if Janet would react. I got a little smile and a coached wave. I think she knew it was me out there but she has been very quiet today so I’m not surprised or concerned by the delayed reaction or the subtlety of it. Suzanne said they went on a nice long inside walk with Janet powering herself the whole way and Suzanne only having to step in when the hallways got too busy. Janet didn’t talk much but made her intentions clear with facial expressions and just powering away in her wheelchair.

I gave Janet a chance to lay down a little before dinner as she had not done so all day and was looking a little sleepy after Suzanne left. She had about a half hour of rest time then we headed off to dinner. Nursing changed the water delivery to 120ml before and after each meal which is what it was with the tube feeds so that makes sense but apparently dietary will review it still this week. Seeing how tired Janet was I didn’t think she would eat very much. She surprised me by eating all of her soup and a good bit of the Ensure and yogurt as well as some apple sauce. Good to see! Her tray came correctly for the first time but seven people on the unit got nothing at all! The kitchen is not a very popular place right now. I have been mostly feeding Janet myself and encouraging her to step in and help herself when she wants. She seems quite happy to be served and even in her quietness today she would make it very clear when she didn’t want anymore of something. Either a hand wave or a closed mouth and shake of the head. She may not look it all the time but she is definitely taking more control over what happens in her day and I hope that by continuing to give her choices that will improve even further.

Last to leave the table tonight, we headed back to her room for a stretch before sleep. I thought she might crash on me while I was stretching her but she stayed awake and gave me some smiles and a couple of chuckles as I talked to her. I’m happy with the stretching of her legs tonight as well as her arm but get a sense the Botox may be wearing off. It could be her state of mind too though. I find the less relaxed she is the tighter her extremities are. Janet was doing a lot of thinking today and seemed to be confused at times but probably was just so focused on one thing that anything new didn’t register right away. All in all it was a good day, especially on the eating side and the stamina side as she stayed awake all day with just the one short lay down session.

Praying for a restful night and a day filled with learning, healing and participation tomorrow.

Janet was sleeping peacefully when I arrived this morning and not even her nurse, Faith, wanted to wake her but we decided to as we don’t want to start a bad habit. When Janet opened her eyes she smiled and I was glad to see she wasn’t too upset with being woken. Faith got her cleaned and dressed and I got her up and out for breakfast. Janet had a nice smile for the breakfast table of Judy, Bea, Barb, Cliff and Alice but was not awake enough to care about eating so only had a few bites of yogurt and strawberry Ensure. When we got back to her room she wanted to get back into bed so I let her just so we could talk and I thought a little more resting time would help but not sleep time I warned her. I gave her the options of home, church or stay here for the morning and she chose stay here. That meant I got to give her another really good stretch after we just chilled for half an hour.

I was quite concerned about her legs this morning as I found them quite tight when she was first getting up but once I started stretching them they loosened up quite nice. I was sure to compliment her on that fact to try and reinforce how she needs to keep them moving and not bent up. Her right arm was a little stiff to start this morning as well but like the legs it got better with movement and Janet seems to be able to tolerate a greater range right now. We did lots of shoulder and arm work this morning as well as some sitting and standing exercises. I assisted Janet with a little Fred Flintstone driving just to see if that right leg would move at all. It did a little but mostly because it was involuntarily shaking. Janet was very strong at getting up from bed this morning but still needed help with the right leg. One time after getting back in the wheelchair she took right off and got going too fast off of the fall mat and crashed shin first into the dresser. She cried for a bit then I showed her how her foot can help her to stop as well as go. Not sure if that concept sunk in but maybe we’ll find out this afternoon.

The morning went by really fast and before we knew it everyone was out for lunch. I have been letting Janet choose where to sit and the last couple times she’s chosen the table that usually is with Mary, Edna and Sharon. She was all big smiles as she headed there for lunch today and the ladies are really happy that Janet chooses them. Meal times are becoming a really fun time that Janet is enjoying more and more. Now if the kitchen would just get her order correct! All she got for lunch today was vanilla Ensure and thickened water. Once again the nurses had to spring into action and pilfer some yogurt and pureed fruit from other trays and ask the kitchen to bring some soup. They did and I noticed it was the same lady who had been to Janet’s room last week and took my very specific instructions and wrote them down in her special little book and assured me all was well. Seriously. Janet ended up eating all of her soup, half the Ensure and yogurt and a good portion of the pureed apricots as well as all of the pureed prunes. I asked the nurses about hydration as Janet is no longer getting the water she would get with the tube feeds and they said to give 100ml after each meal until they hear from dietary if the amount should be different. Good luck with that.

So after a long leisurely lunch we made our way back to Janet’s room to get ready for a visit from Suzanne and she arrived a few minutes later ready to tell Janet lots of stories and maybe go for a walk.

Thankful for the good day so far and looking forward to more quality time with my beautiful wife.

After lunch I got Janet up to do a little Bam Bam style driving. She wheeled around the unit very well and with improved awareness on the right side I think. I asked her to choose a table to sit at for our visit with Ann Marie and Hayley. She did and we enjoyed a nice visit with the two of them. Hayley is excited about her placement on 4 East starting in January as part of her first year of nursing school. I kind of hope Janet is still at KGH then so we can see Hayley in action.

Next up was a Skype call to Mary/Gaga’s house where Leslie and Gavin are visiting. Janet used her loud voice quite a bit right from the start of the call, unfortunately a lot of it was Klingon though. We had to end the call a little soon as I was having power supply problems with the iPad. Tends to happen when you don’t charge it for over a week.

Dinner was hilarious again. Just thickened lemon water and strawberry Ensure on the tray. Janet’s nurse kindly phoned the kitchen and had them send a bowl of soup down, which she then had to heat up and thicken. Another nurse got a yogurt and some butterscotch pudding for Janet. She ate 2/3 of the soup, enough to avoid the tube feed, as well as little bits of the other things and enjoyed the chatter from Mary, Edna and Sharon.

I left Janet at the dinner table and headed to church knowing Brenda was on her way for a visit. When she arrived Janet and Mary were the only ones at the table and Janet wanted to go to her room. Shortly after they got there Janet indicated she wanted to lay down in bed. Brenda very bravely got Janet into bed using a pivot move all by herself. Well done Brenda! She read some of the Gabby book to Janet and they chatted with Janet whispering, then Brenda starting singing Christmas songs with her and Janet started using her loud voice, especially during Jingle Bells. Nice! When I arrived after church Janet seemed quite pleased with herself for singing out loud but when I asked her after Brenda left what songs she sang she couldn’t name that tune unfortunately.

I gave Janet a decent stretch before bed and reminded her to not bend her legs so much. She seemed to get it in that moment. Praying for a restful and healing night and feeling blessed by the friends we have.

When I got back to Janet’s room this afternoon I was pleasantly surprised to find Carrie there. She was having a heavy duty conversation with Janet and conveying her love and the love of the Holy Spirit as only Carrie can. She is definitely one of the people God has placed in our lives at the right time and today was for sure the right time for some Carrie. I asked Janet afterwards if it was a nice visit and she said “it was a surprise” and agreed that it was a nice surprise.

Janet was having her tube feed lunch through Carrie’s visit which told me she didn’t eat much pureed food earlier. I talked to the nurses and they said Janet ate some but had a little coughing when eating some mashed potatoes and her voice was often gurggely. Connie was there and decided to play it safe and put Janet back on the liquid diet for the weekend and she may order another swallowing X-ray to ensure Janet is clearer than she sounds. One step forward two steps back but everything in its time.

After a quick change Janet got up from bed mostly unassisted while being watched by her skeptical nurse. High five! I then got her into the wheelchair and asked her to take me to the gym. She very confidently started out and made the first two turns correctly but headed for the first gym she saw instead of the one she goes to. She eventually found it then did really well making her way to Connie’s office. She got right to it but pointed to the door on the wrong side of the hall. Next up was the OT department and she nailed that one as she did with the dining area. I asked her to go back to her room from there but because it’s on the right hand side of the hallway she sailed right past it. It was pretty cute watching her slow down and peer into each room she past on her left then speeding up as she realized it wasn’t hers. This is the first time I’ve tested her this way and I’m very pleased with how she did.

Dinner was a massive disappointment. On her tray was Vanilla Ensure and thickened lemon water. That’s it. No yogurt, no soup. The person serving the meals brought a soup after but it wasn’t thickened so I said no then she found a yogurt and Janet ate most of that. In light of Janet’s less than satisfactory swallowing right now the lack of food isn’t a big deal but I got the impression even she was not impressed when the tray arrived. Hopefully the weekend is better he said sarcastically.

I read a couple chapters of Anne 2 to Janet after dinner and with one and a half pages to go she was closing her eyes. I got her all ready for bed and during our prayer mentioned my dad and she started crying again which got me going and that was not how I wanted to end the day with her so we talked a bit and soon her smile came back along with the sleepy eyes and I was able to say goodnight.

Praying for a restful and healing night and a tomorrow filled with excitement and progress.

This update is dedicated to my dad, Ralph Dieno, who passed away comfortably this morning in Nanaimo, BC. Thank you to all of the many friends that helped both him and my mom over the years. Your love and commitment has been an inspiration. I am grateful for the opportunities I’ve had to visit my dad over the last few months as despite his failing health we were able to talk about things we never talked about before and as you know, neither my dad or I are very big talkers. He was a very caring man who easily gave of anything he had to anyone he felt was in need.

Jessica was helping Janet get cleaned up and dressed for the day as I arrived this morning. Janet greeted me with a nice big smile despite being rolled around while being washed. She participated nicely in all aspects of getting herself ready. By the time we got out to breakfast everyone else was pretty much finished theirs but there was still plenty of time for some morning chatter. Janet ate half her yogurt and some applesauce and even tried a little peach juice. The coffee flavored Ensure was on her tray despite clear instructions to give strawberry or vanilla only. I guess I shouldn’t be surprised. This was the first morning without a 6am tube feed and Janet ate more breakfast than I’m used to her eating including a few spoons full with her meds stirred in.

Moira and Robyn joined us at the breakfast table as Moria wanted to test Janet in the Arjo to see why nursing had stopped using it and what legitimate concerns they might have if any. When Janet was done eating and we shared some tears over my dad we headed off with Moira and Robyn to her room. Robyn had only used an Arjo once before so was a good guinea pig to see if she could screw it up. She got Janet all hooked up and lifted her out of her wheelchair no problem at all. Moira tried a few other configurations to see if Janet would be in any danger at all but all seemed good. She then brought Janet’s nurse for the day, Karen, in for a trial and she mentioned that they usually bring people all the way up to a standing position. That might be the problem as Janet can’t stand straight up nor does she need to. It seems to Moira and Robyn and Karen that if things are done properly for Janet the Arjo will work fine and we can get her onto toilet training. Here’s hoping.

I left Janet with Moira and Robyn who were going to do some stretching with her in the gym as we didn’t have time for that earlier.

Looking forward to an afternoon of progress.

I came back to a very smiley and chatty Janet laying in bed with her lunch feed running at 564ml. I could tell right away that the bottle had not been changed which meant that the dose limit had not been reset. To make double sure I paused the pump and went to the nurses station. The one who started the feed got all panicky and practically ran to Janet’s room. I kept telling her it’s fine and you just didn’t reset the dose limit right? She was so flustered she wasn’t listening to me at all. When I asked her if she changed the bottle she responded with “I need to think this through, give me a minute”. It was all I could do to hold back my frustration. This was not a catastrophic event and I had it all figured out and was just double checking but she was in a total panic. So much so that she started resetting everything again, incorrectly, instead of letting it run to 650ml when I would shut it off since I’m in the room now. I just don’t get how some of these people get through the hiring process.

Janet and I were finally able to continue our afternoon chat and she used her loud voice a fair bit for me. She used it really well for Dr. Jones when he popped in to update me on some decisions that had been made at lunchtime. He was thrilled to see Janet so bright and smiley and to hear her voice. Good timing Janet and a nice achievement on the six month anniversary. As a result of the lunchtime test for eating pureed foods, Janet’s meds will now be given to her crushed and mixed into some of the food as opposed to injected into the peg tube. The 6am tube feed has been discontinued and if Janet eats more than half of a meal that corresponding tube feed will not be given. The bedtime feed will continue so she has enough nutrition until breakfast. Janet ate some of the pureed vegetables and a little of the pureed meat but not enough and not well enough to switch over to those on a regular basis. The nectar thick meals will continue for now. Dr. Jones says this is a big step forward and noted in Janet’s chart that he noticed “remarkable improvement”.

We had a little time to go for an inside walk so I set Janet up to go Bam Bam style where ever she wanted. We ended up in the Centennial Building lobby then rode the elevators to check out the skywalk across Pandosy St. I think Janet enjoyed the view. I took it easy on her going back as she had a busy day and said she didn’t want to drive anymore. She was getting pretty tired by the time we were back in her room. I tried some oral motor exercises with her but she was not interested so we watched some X Factor clips on YouTube and that interested her enough until Cathryn came in for a visit. Janet was pretty quiet and showing signs of getting sleepy so didn’t have much to say to Cathryn. She did scare us though when she swallowed wrong and started choking. She was having a tough enough time clearing her throat that I asked Cathryn to go get help and I actually pulled the alarm as well. Amy arrived right away and Janet was pretty much settled by then. I knew she was fine as long as she was coughing but there were a few seconds of real struggle there so I’m glad we got help. Amy took her vitals and talked to Janet a bit to make sure she was OK. We got some nice loud voice from her to signal all was well.

Cathryn wanted to ensure I was up to speed on the Connect option. She confirmed that things will be reassessed after Christmas then the application process will start if appropriate. Once at Connect Janet will likely be there for a longer stay than most. Their program is three months to two years in length and focuses on activities of daily living. It all sounds positive and I’ll be fine with it as long as I can see that Janet is no longer progressing fast enough at KGH. Ponoka has been ruled out as everything that would be done there is being done here. Dr. Miller used to work there so before I put that one out of my mind I’ll talk to him.

Kiko arrived at dinner time so she could learn how to help Janet at meal times. She plans on assisting with Saturday lunches and Janet is looking forward to that. We sat with Nick, Leo, Alice, Barb and her husband Cliff. Kiko was instantly part of the group and Janet wanted to stay longer after she had finished her dinner as she was enjoying the chatter as well despite being tired. Her nurse came by after the meal with her medication and Janet very obediently took one more spoonful of strawberry Ensure to get the med into her. Well done.

It was definitely bedtime after dinner and by seven, Janet was all but asleep after a busy and productive day.

Praying for a restful and healing night and thanking Jesus for the incredible progress Janet has made over the last six months and for all the amazing people He has put into our lives at just the right time.