shuttle

Reluctant Progress. The bad gym attitude returns. #TSJ

I arrived at Connect this afternoon surprised to see Janet hanging with Jess in the living room. She had turned down an offer to rest for a little while and was waiting to go upstairs to a birthday party for one of the other residents. Janet was able to tell me she had helped Jess make cabbage rolls this morning, had a shower and went to the gym. Lorne said he gave her a good arm and shoulder stretch and Jess said she helped just fine with the cooking. John came in to sing with Janet this afternoon and she said that was fun. Janet willingly went off with the Jess to the party and returned an hour later saying it was so so and not really her thing. Good she went though.

Nap time started late and ended late with Janet getting almost a couple hours of sleep before a late and short happy hour. Her speech was very good this evening as far as awareness and intelligence goes but the volume level was low most of the time. I was impressed with a lot of her comments and responses and wish she would stay at this level for longer periods of time. There are still moments of confusion that creep in quickly and leave quickly too. I want to say the trend is towards a higher level of awareness but those confused times bother me.

Garrett and I had a very challenging time with Janet in the gym after dinner. He asked for my help so he could take Fred at the same time and Janet fought tooth and nail against going. We got her on the Shuttle and she did a so so workout there for me. From that performance I can safely say she hasn’t gained a bit of leg strength since the last time I went to the gym with her which was a month ago. Garrett assured me she’s done better recently and I’ve had her standing fairly well recently too. Hopefully the hydrotherapy will allow her hamstrings to relax while we wait for the Botox then she’ll be able to get the kind of leg extension that’ll enable her to build strength. I left her with Garrett for some leg stretching and he said that went very well. He sent Janet off from the gym on her own to see if she could find her way back. Unfortunately I went down to see how they were doing and found her half way to her room. I told her I’d go hide and she could try and find me. She found her room just fine but not me. I am a good hider. Just sayin.

In good spirits and talking really well Janet went down to poker night to share more Easter treats then proceeded to eat two oranges as her bedtime snack. We read more of Slow Dance and once again looked at each other numerous times and laughed a couple times at the similar events being described. Janet didn’t argue abut going to bed as I thought she might. She was not showing any real signs of fading even at nine o’clock but she happily did her nighttime routine and was pretty sleepy by the time I said goodnight.

Our video from the Easter services at Trinity continues to get an amazing response from those that have seen it. Thanks again for all the encouraging feedback. If you’d like to watch the entire Easter message and see how Wayne used our story and that of two other amazing people you can do so here.

Praying for rest and healing tonight, energy and brightness tomorrow with a good attitude towards getting stronger.

Math. Janet smartens up. #TSJ

Jess was just putting Janet to bed when I arrived this afternoon. They had been in the gym with Tez and Janet was nodding off so they called the session short and Janet wasn’t complaining at all. The day had been a full one to that point. That was her third trip to the gym already, having gone with Jess after breakfast for the usual stretching then with Garrett just before lunch for some good Shuttle work then with Tez so he could get her on her tummy to stretch those hamstrings. They also tried the transfer belt but that’s when Janet started nodding off. More work on that next week. Mary Lou spent time with Janet this morning as well, working out of the new Speech workbook. Apparently Janet was a little tired during that session as well but overall had a good first part of the day.

Since she was headed for bed just after two I anticipated a nice long nap in hopes she would recover for a good evening session. I got my wish this time as she slept for a good two hours and was noticeably refreshed afterwards. I really think she’s not sleeping well at night for some reason and hopefully she’ll snap out of it soon as she normally does.

It took Janet the better part of an hour to come fully awake after her nap and she made a good effort at getting up from bed and “stood” really well for me transferring to the toilet. While she waited for dinner I gave her the med book and asked her to get Bob to get her meds for her. She thought about it way too much and by the time Bob came asking if she was ready for her meds she was a little confused and needed quite a bit of coaching to get through the process. Janet really enjoyed the dinner prepared by Chris especially the asparagus in cheese sauce but as expected was more excited about the Tootsie Roll for dessert. Unfortunately there was no Ladies Night tonight as this would have been a good time for Janet to try it out as she was pretty bright still. She was denying she wanted to go but I think would have a good time once there. Maybe next week. Surprisingly she agreed to play the math game on the iPad and she did remarkably well, the best she’s ever done with me at both answering the questions and tapping and swiping her way through the various levels of the game. She still neglects the right side of the screen a little but not as much it seems. It was fun watching her and only having to help occasionally and it was especially nice to see a little confidence showing in her.

Praying for a solid nights sleep that brings healing and lots of positive energy for tomorrow.

The Hangover. Janet recovering from the weekend? #TSJ

As usual Janet was hanging out in the living room when I got to Connect this afternoon. She was lounging in her comfy chair, legs up, pillows in place, all she needed was a nice cocktail and she’d be set. She agreed it was pretty comfy and that’d she’d even closed her eyes a bit. Jess was there to help with the report of the day so far. Janet had trouble getting started in telling me what happened and couldn’t remember what she had for breakfast. Pancakes. She remembered going to the gym but not what she did there. Garrett told me it was a tough session with lots of tears. Janet refused the Shuttle and said her legs were sore and Garrett found the range of motion on her right shoulder to be less than previous. I found her legs to be quite stiff today and am hoping its just from her overall state of being as she seemed quite tired all day. That’s as much of a report as I got as Janet surprised me by agreeing to lay down for a while. She did so for about an hour but didn’t sleep much.

With a little more energy than before her rest time Janet got up and we went to see nurse Jen about her former peg site. On my way out to Connect today I got a surprise call from the KGH Rehab Pool saying Janet has been accepted into a program there for the month of March. Since I was on the road I couldn’t get details and I was really excited and shocked at the news. I figured there would be a lengthy wait list to get in there and when Dr. McCann’s office called this morning to say they had sent in the referral I thought it would be a few weeks before anything happened. What do I know. The down side is I’m not sure Janet has healed enough from the peg tube removal to go “swimming” and Jen isn’t sure either. We agreed to have another good look at it tomorrow. Janet is a little blasé about using the pool but I think she’ll like it once she starts. Dr. McCann’s office also said he is very supportive of more Botox for Janet’s legs but officially can’t get her in until July. His lovely assistant Pam will try and get Janet in before then. I have confidence in Pam.

Janet was able to set the table for dinner but needed quite a bit of help as she was tiring again. She gobbled up her dinner though and that gave her energy to Skype with Laurel afterwards for almost a half hour. Her voice was reasonably loud and she mostly responded appropriately to Laurel’s questions and comments but had trouble telling her own stories with a lot of them referencing Jews. The only association I can make for this is from the Academy Awards show when Mark Whalberg and “Ted” were telling Jewish jokes. I didn’t even think Janet was that awake during that part of the show but I have no other idea as to how she got onto that tangent. She was petty funny though. Funnier than “Ted”.

We watched a little YouTube and that was about it for the night. Praying for rest and healing and a hard working productive day tomorrow.

Charlie #TSJ

After last night’s confusion Janet was clear on who I was this afternoon but wondered why I was there. She thought we were going out for “dinner”, meaning lunch. She actually refused to have lunch today, telling the staff she was going out. I reminded her its tomorrow we’re doing that and she seemed to remember then. Jess reported that Janet also refused a shower this morning. I told Jess not to give in to Janet on that one. It’s nice to ask but she needs to be showered regularly and if Monday, Thursday is the deal then that’s what it is. Jess agreed and will shower Janet tomorrow regardless of Janet’s willingness level. Janet did have a good stretch in the gym this morning and seemed at least willing to consider a return trip this afternoon for some strength training.

Thanks to an error at the lab last week, Janet had to go back for another blood test today. Her doctor’s office called to say the lab had done the wrong test. So that meant Janet got to go out for lunch after all. I drove her to the lab and asked them what went wrong. They confirmed that the test performed last week was for a drug with a slightly different spelling than Janet’s as it was incorrectly entered in the computer. Great. We stopped at Tim Horton’s to grab a sandwich for Janet which she devoured back at Connect. We had a good little Skype chat with Andrew after that. Janet had some difficulty putting sentences together but her volume level was decent. Bob took her to the gym for a little Shuttle work, Janet was reluctant to go but did so I hope believing its good for her.

It’s been a while since I did any formal “school work” with Janet but managed to get her doing some matching and reading on the iPad after the gym. I think she got into it because she could tap her way through some of it instead of just staring at pictures or cards on a table. She did amazingly well I thought. Big improvement. She didn’t think it was a big deal but was happy enough to try some reading next. I was very impressed with her ability to follow a sentence and get most of the words. The last time I had her read to me she was clearly going three or four words in then jumping down to the next line. Today she was going the entire seven or eight words then getting the first word of the next line but not the whole line. She sometimes would make up words she thought should follow the word she just read but would correct herself when I called her on it. Janet still didn’t think it was a big deal but I made sure to heap praise on her. High five!

While staff member Carl cooked dinner, Janet set the table for everyone. I had to coach her along a little and she gave a solid effort, clearly liking being able to contribute. The highlight of the day came when Carl brought in his seven week old dachshund puppy, Charlie.

20130218-220735.jpg So cute and so tiny. Janet loved him and I actually did too. He slept in my arm during dinner.

Janet elected to watch a little tv before bed and faded rapidly. Her former peg site is healing really well and not bothering her at all. She had a good toileting day and a pretty successful day over all. Praying for rest and healing tonight and a productive day tomorrow.

Fabulous Friday #TSJ

Janet was surprised to see me this afternoon, she didn’t realize it was almost three o’clock. She’d had a busy day so far and had just started chilling in the living room. Lorne said he had taken her to the gym after breakfast and did a good stretching routine with her. He also got her on the Shuttle and Janet did really well including ten reps with four bands of tension. I made sure to remind her that’s proof she’s getting stronger. Janet had a speech session with Mary Lou’s practicum student then asked to go to the bathroom. Success and progress!

She thought “it would be a good idea” to go to the bathroom before we left for home and it was. She’s really catching on to this. After a sing along drive, our weekend at home started with the usual play time with Nash then we started making our pizzas for dinner. Janet did a great job decorating hers, I only had to push a few things back from the edge and it was good to go. In a very un Janet like move she chose chips over fresh vegetables to accompany the pizzas. Yes! And in another rare move she ate one and a quarter pizzas! We had made an extra one in case Heather is starving when she gets in late tonight and Janet surprised me by asking for more after finishing hers. We are still trying to gain a little weight so it’s all good.

I figured it was time to see if Janet can handle watching an entire movie so I gave her a choice of four familiar titles and she chose the always hilarious Zoolander. We started it during dinner and with one bio break part way though Janet watched the whole thing. There were no out loud laughs but lots of smiles and giggles. She really enjoyed it.

It’s awesome to have her home and she is quite happy to be here and looking forward to seeing Heather in the morning. Her conversation skills continue to get stronger as does her ability to do things herself around the house. Praying for a restful night and a fun day tomorrow.

Dinner and a Game #TSJ

My day with Janet started a little later than normal and she asked me “what took you so long” when I arrived. She was smiling and when I asked her to try and remember what I’d said about today she responded with “you said you wouldn’t be here till four”. I actually said three but that is still a major improvement in her memory recall and for the record it was 2:45 when I got there so I was actually early. Janet was quite cheery but after twenty minutes or so her words started scrambling beyond recognition so I suggested a rest. Of course her response was no way but when I said ok, let’s go use the Shuttle then, she opted for the rest. I warned her the Shuttle would be done before we left for dinner.

She was in the midst of a very deep snoring sleep when some loud voices in the hallway woke her up so she didn’t get the full benefit of the rest time she had but it was better than nothing. I took her to the gym and she was all for it until I parked her beside the Shuttle. She got really upset and took quite a bit of convincing to get her to give it a go. She did well, matching her personal bests for reps but not getting the best extension ever. I decided to try the machine myself, partly so I could justify me saying positive things about it but also to try and see what may be causing Janet’s hatred of it. I can see how effective a leg workout it is but I got quite a weird sensation when I started some reps. I felt a little like I was floating and was not in total control of my balance. That is a feeling that would totally freak Janet out and I wonder if she is experiencing that. She hasn’t said so but I’ll talk to Tez next week about it.

We met Suzanne for a pre game dinner at a little Italian bistro in Lake Country. Janet ate her first real salad and a massive portion of lasagne. She didn’t talk much but she sure did eat. We got to the UBCO basketball game and enjoyed it very much.

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A long time family friend, Simon, came over to talk to us at halftime. Janet had a big smile for him and will be seeing more of him over the next while as he’s started doing some practicum work with Tez at Connect. Cool.

Janet sang her way home as I tried to find a way to turn up her volume. She was quiet most of the night and seemed a little tired but does her face ever light up when she starts singing. After a snack and some more singing it was way past bedtime so I got her all tucked in. In our prayer I asked that she continue to work hard in the gym and understand how good the Shuttle is for her and she started crying because I said that. She was fine after we talked about it for a bit but my goodness this is getting a little much. We may have to find an alternative soon.

Praying for a good nights rest and an energetic day of fun tomorrow.

Don’t Let Anything Stop You #TSJ

When I arrived at Connect this afternoon Janet was cruising around the kitchen area with a family picture in her hand. She had just finished a glass of water and had been working with Garrett on identifying the people in the picture. She did pretty good the first time around but then everyone turned into Andrew and we don’t want that do we? I helped her for a little while and eventually she got everyone back to who they really are and hopefully we can stay that way. Janet was in a good mood and Garrett reported she had a pretty good day although she balked at going to the gym with him this morning and when they finally got there she made a minimal effort and refused to work on the Shuttle. I think she may have been tired from the weekend so we’ll see how she does tomorrow.

I spent a lot of time talking with Janet trying to get her to recount her day so far and what she had done over the weekend. Laurel sent a nice email to read to her and Janet actually started crying as I read it. I also read her the post from Nick Vincent that I shared earlier today and she was moved by his story. When I asked her what she thought the similarities are between his story and hers she responded with “don’t let anything stop you”. I was blown away by that answer as it came totally from her. I didn’t summarize what I had read to her or anything. She took it all in and made a connection. Brilliant!

Taking advantage of that awareness I got Janet down to the gym with the promise of a little leg stretching then a routine on the Shuttle. She was fine until she started on the Shuttle. Four reps in, the tears started. I convinced her to keep going and she made it to thirty three. Then she totally lost it, having the most demonstrative hissy fit yet. After lots of talking she finished her routine with a respectable result but I am getting a little concerned about her attitude. Every chance I got the rest of the night I reinforced how well she is doing and how important it is she keeps working hard. There were moments where she seemed to truly buy in and there were moments where I got the shoulder shrug and a bit of an eye roll. After the second successful standing transfer to the toilet she seemed to gain a little confidence and off to dinner we went.

Spaghetti sounded really boring to her and she was a little upset that that was what she was getting but ended up eating two servings of it very happily. Fluid intake was a little lower than at home mostly because she wasn’t offered anything other than water all day. The dietician is coming in tomorrow and will see Janet and hopefully me first thing so we can discuss food, drink and peg tube. Nurse Jen confirmed that as long as Janet is hydrating well the peg tube can be removed in two weeks. The staff are logging Janet’s fluid intake daily and I’m to keep track when she is away from Connect. So far so good.

The rest of our night was spent talking and reading Slow Dance. In the book they were describing an MRI experience and Janet commented that “I didn’t have anything like that”. Right she is and she seems much more aware that something has happened to her and even a little accepting of it. When I was done reading and told her it was time to get ready for bed she listed off all the things she needed to do to get ready and told me she needed help with all of them. I expected tears to follow but she just stated them matter of factily and we got started. Janet has to get up a little early tomorrow so we can get to the eye doctor so we tried to turn out the lights a little early tonight but that didn’t really happen as she was quite chatty all the way through her bedtime routine.

Praying for a restful night an informative visit to the eye doctor tomorrow and a positive, hard working Janet tomorrow.

Planning #TSJ

Janet was happily eating a bowl of what looked like soup to me when I arrived at Connect this afternoon. Turns out it was actually chicken pot pie, or at least it used to be. Hopefully we are nearing the end of the pureed diet. Mary Lou dropped by the table and gave a very positive report on Janet’s Speech session for the day. They have been working towards getting Janet to turn up the volume and part of that process is being able to string at least five words together on one breath. Janet is now doing that and Mary Lou is quite happy with her progress. Mary Lou was standing and talking to us on Janet’s right and I noticed a couple of times that Janet turned her head way to the right to look at Mary Lou. I have noticed Janet more aware of things on the right side lately but have not seen that extreme of a turn before and asked Mary Lou if she is noticing more right side awareness and she said yes. Good news. Janet seems to be responding well to Mary Lou and I think she’s got a good program in place for her. Once Janet was finished her “soup” I took her for a bathroom break before our meeting with Brian and team. The bathroom breaks have been going well lately, Lorne even took her for a successful one this morning.

Brian led us through the first of what will hopefully be a bimonthly team meeting. Janet’s ABI Coordinator, Terri was there along with Lorne and Jen, the house manager. It was a good chance to get to know each other a little, especially for Terri as we had only spoken on the phone previously. She won’t be as directly involved as Cathryn was during Janet’s stay at KGH but once we get closer to Janet moving home then Terri will become the key player. One priority for this meeting was to come up with a rough schedule for Janet’s day. That schedule will be built around meal times and a quiet time in the afternoon. We know that Janet likely will not sleep and will not want to go to bed during that time so Jen came up with a good idea of putting a lazy boy type chair in the living room and having Janet chill in it from two ish to three ish each day. Worth a try. We also agreed to let Janet try and sleep at night with no rails on her bed. Connect will procure a couple of fall mats and once in place the experiment will begin. I’m confident HouDieno will exit the bed at least once but I believe she is more aware of her surroundings now and will learn from any such fall. Janet says she doesn’t remember any of her previous escapes but accepts her nickname for what it’s worth. I can understand Connect being nervous about doing this but I really don’t see how else Janet will progress if we don’t give her the chance. There are a few things to discuss with Tez before finalizing Janet’s schedule and hopefully we can do that before the weekend. Brian says he has feelers out for a music therapist for Janet and has a couple nibbles. I’m really hopeful we can get something going that way as I believe Janet will respond very well to it. Today’s meeting was a good foundation builder and I am confident Janet has a good team looking after her.

After another successful bathroom break I took Janet to the gym for a good leg stretch and some work on the Shuttle. She set a personal best today going for thirty two reps at two bands of tension, then six reps with three bands and thirteen reps with one band using her right leg only. High five! She required a fair bit of encouragement during the routine as she keeps saying things like “it doesn’t matter” and “so what” when given the reason for doing something. I’m confident these responses are coming from a lack of confidence place rather than an unwillingness to get better place. She managed a big smile after doing the thirty two reps as I reminded her she only did sixteen the last time.

Dinner was fun tonight as Janet reluctantly chowed down on pureed Spaghetti and all the guys were BBQ’ing steaks and Leanne was making baked potatoes for them. The chatter was good and that helped Janet plow through her mush. We played a game of Chutes and Ladders before bed and Janet won easily. She had a lot of trouble spinning for her turn no matter where I placed the spinner. She said she could see it fine but couldn’t make her hand do it. I noticed a few times today that she was trying to get her right hand involved in things and she did try and lift it to spin a couple times. I want to think this is a sign of something coming back to her right arm but won’t go there yet. She asked if I would read some Slow Dance to her in bed and four pages into it she was snoring. It really is an interesting book, she was just played out from a busy day.

Praying for rest and healing tonight, a good workout in the morning and a bright and ready to swallow strong Janet for the afternoon.

Sleepover #TSJ

My day with Janet began with a good workout in the gym. At least the first part was good with lots of good stretching. When it came time to pole dance Janet started getting all emotional and lacking confidence again. I talked her into trying to stand three times and each time she gave a good effort and by the end of the third try I think there was a glimmer of belief in her eyes. I got her over to the Shuttle after that and she strongly did thirty reps with one band of tension. No emotion. Yet. She managed four reps at two bands then broke down completely. The loudest cries I’ve heard from her. All based I believe on a lack of confidence. One band is really quite easy for her and two requires some effort but not what should be an overwhelming amount. Next time we’ll try fewer reps with one band and see if that helps and maybe we’ll start on the Shuttle so she’s not as tired.

In chatting with Christa on the way out of the gym I told her I was taking Janet home for the rest of the day. She asked why not overnight. I didn’t think we were allowed to do that yet but Lorne confirmed we are so as I write this at 11:08 pm, Janet is sleeping in our bed right beside me. First time in over eight months!

We arrived home to an overexcited Nash then had a nice Skype chat with Heather and Allan. An unauthorized lunch followed as we watched a little tv before Skypeing Leslie. Janet was showing signs of tiring so with no pressure to do anything or be anywhere she agreed to lay down for a bit. That helped a lot as she had a nice burst of energy for the evening and ate two servings of a delicious manicotti that Kiko made for us. Instead of desert Janet elected to have chips and pop while we watched some Aussie Open tennis. I saw a lot of old Janet tonight as she very stubbornly stayed up until just after ten. She helped me in the kitchen before we went to bed and I saw some signs of confusion as she tried putting some things away. I can’t blame it on the drugs though as I think she was like this before and I’m just hoping for more improvement.

Janet is very happy to be home tonight and actually found it a little surprising that we were going to sleep in the same bed. Looking forward to waking up with her in the morning and praying for rest and healing. Thanking Jesus for my beautiful wife. Even as she snores.

Gourmet Puréed #TSJ

When I got to Connect this afternoon I asked Janet how her day was so far. She was happy to report that she “got up this morning”, had a smoothy for breakfast and did not go to the gym. I thought that was pretty good reporting on her part. Turns out she did go to the gym but shortly after arriving a new resident with some behavioral issues came in and disrupted things enough that Janet started crying so Garrett took her back to the “house”. She had some Speech therapy before Rikki made her a colorful lunch of green beans, carrots, cottage cheese and pork. I was surprised to hear about the cottage cheese as Janet had thought it pretty disgusting at KGH but apparently lapped it up today.

Our chat took place in the living room while waiting for Brian to come and meet with us. We talked to him in detail about the wheelchair and now have a plan in place to get Janet’s chair set up ideally for her so I can actually buy the darn thing. Brian offered a few accessories intended to make Janet’s day to day routine easier. Most of them I found to be too compensating and Brian agreed that we need to have Janet learning and re-learning to do things rather than having something do it for her. One useful item is a short easel that sits on top of her desk at an adjustable angle and allows a book or the iPad to be positioned in a more useful way for her. Some of the items were food related and we agreed to leave food prep out of Janet’s itinerary until she is cleared to eat real food. That brought up the question of the swallow X-ray. Connie had emailed today saying KGH has yet to receive the doctor’s order. I phoned her the doctor’s office right away and was told she had some things to do to it before sending it off. Translation, she forgot about it. Grrrr. We had a good long talk with Brian and Janet was very patient throughout and near the end she went off to explore the living room a little. She returned with a pillow on her lap so I invited her to a pillow fight. She thought that was great.

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Janet went for a shower before dinner and we hung out in her room for the few minutes we had before heading down to eat. Rikki made another colorful plate for Janet, carrots, mashed potatoes with a little yam in them, cottage cheese and chicken. The best looking meal Janet has had at Connect and apparently a tasty one too.

Since Janet missed out on the gym this morning I took her in for some leg stretching and got her on the Shuttle as well. I wasn’t able to set it up as well as Tez had it but Janet still got a decent go at it. She was reluctant to try standing so I tricked her a little bit into doing a standing pivot off the Shuttle. She did really well once I got her started towards standing.

Bob was leading a bunch of the residents in a poker game tonight and Janet enjoyed watching for a little while. She didn’t understand the game of course but liked the loud action. She also really enjoyed watching some YouTube before bed and after being tucked in agreed that today was a good day.

Praying for rest and healing and a productive day tomorrow with positive news about the swallow X-ray.