Overdose

The Team Save Janet Report is out! #colonoscopy #standing #swimming #shopping

Each time I come to writing this blog update I think I’m going to shorten it or use a lot of video to simplify the process but Janet keeps amazing me and others with new things she can do almost on a daily basis. Therefore, I think I’m going to publish future updates randomly as events warrant and certainly more than once a week. Twitter is still your best channel for being the first to know and you can follow me at @larrylatour .

The week got off to a challenging start for Janet as Tez had her on the parallel bars Thursday afternoon for what was supposed to be a short test of her capabilities. Twenty minutes later a very tired Janet was allowed to sit in her wheelchair after balancing and walking up and down the bars while hooked up to a sling. She did better than expected and if she can get her right leg stronger will be on her way. Her strength definitely has improved as that night she was able to do a set on The Shuttle with five bands of tension. A first. To round out the day Janet responded to some emails by spelling out the words she wanted to use while I guided her finger to the appropriate letter. I’m impressed by her ability to spell.

When I arrived Friday to pick her up a little before our agreed upon time she greeted me with “I’ve been dying for you to get here”. Karl had put her through her morning gym routine nicely but she was focused on going home for the weekend. We made a few stops along the way for some new pajamas and then some groceries. I figured with the air temperature being thirty eight there was no way she’d think the pool water would be cold but this is Janet we’re talking about. She got used to it after a few minutes and had a good swim. Then helped make a grilled chicken Caesar salad, something she never would’ve eaten before but really enjoyed this time, possibly because she helped make it. As we sat down at the end of the night to watch AGT and enjoy our Blizzards saved from last week, Janet was extremely disappointed that hers was so small. Not sure how that happened but I ended up having to give her some of her regular ice cream to make up the difference. Janet loves her ice cream.

I’m sure it wasn’t the ice cream that kept Janet awake most of the night and it wasn’t being all hyped up about a daughter getting married the next day either, I was just glad I didn’t have to take her for a walk at 3am. I let her sleep until she said she was ready to get up around 9:30 and a good Saturday began then. Janet phoned her mom to see if she wanted to Skype with her and of course she did then it was out into the yard to pull weeds, cut some things back and transplant the wedding plants into a permanent location. We had a great time working together on things Janet could easily reach. I think Janet really enjoyed the different tasks and she seemed genuinely interested in re learning names of plants and trees. After a nice swim where Janet got some push from her right leg we experienced an awesome service at Trinity. Janet was singing and clapping along to the songs and loved Wayne’s message entitled There Is Always Hope. Watch it There is Always Hope if you like. By the end of the night Janet was nice and relaxed and set up for a good nights sleep compared to Friday night. Part of our regular bedtime routine is to have Janet stand for a while prior to getting into bed. Usually she’s tired and a little weak and she will tolerate ten seconds with me holding her up. Saturday night however felt strangely different to me and I decided to let her go briefly to see what would happen. She actually didn’t fall over right away and I was confident she could actually stand. Sure enough after a couple of tries she stood all by herself for a few seconds. I was so excited I had to try and get some on video. This is the result as posted that night,

and this is a little better footage shot today in the gym.

Janet is standing on her own now for close to thirty seconds at a time and correcting her balance more and more. She still needs to gain confidence and trust in her self but its coming. Very cool!

Sunday arrived and I was a little nervous about it as Janet was scheduled for a colonoscopy Monday which meant Sunday was prep day. In case you’ve never been through this, as we hadn’t, prep means not eating anything, drinking four liters of a fluid designed to “flush” your body out and drinking clear fluids as much as possible. The part that made me nervous was Janet’s history of not wanting to drink much of anything and certainly nothing fast. She took five hours to drink the first two liters instead of the prescribed two hours but at least she got it in her. Before the flushing started we got in a nice long walk a short swim and a leisurely hot tub. The evening was very quiet with a “few” trips to the bathroom.

Janet was very cooperative throughout the colonoscopy adventure and I’m very proud of her for hanging in there as well as she did. The actual procedure went very well and Dr. Agnew reports a normal scope with no blockages or polyps found and no evidence of any mechanical reason for Janet’s constipation. He recommends Janet continue on a high fibre diet along with the Resotran and Peg 3350 if needed. He said normal bowel movements are considered to be anywhere between one to three times a day and two times a week so if we can keep Janet closer to the high end of that scale she’s doing fine. As a reward for getting through a difficult couple of days I treated Janet to a really nice dinner at Joey Kelowna,

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a place we’ve been to a few times and always enjoyed but for some reason don’t think about that often. It’s high on our list now. Yummy.

It didn’t take long for Janet to bounce back after that tough weekend and she even surpassed her previous status. Proof came when Jess found her in the bathroom, standing up ready to sit on the toilet Tuesday morning. The Team’s goal for Janet is to be doing supervised transfers by early October. Here she was trying to do an independent transfer and almost making it. The pace with which she is gaining balance is very impressive to me. I hardly have to touch her during pole transfers now and today she was starting some transfers without the pole, only grabbing it once she was up. On her last transfer from the toilet tonight I saw a move with her left foot that was a lot like a step forward and it made me very excited about the possibility of Janet walking again. Last night she also demonstrated her smartness again by typing an email pretty much completely on her own. No help with content or spelling from me, just a little guiding to a few letters, otherwise, all her.

The trend continued today with the aforementioned awesome standing capped off by her wanting to go to outdoor movie night where she laughed and smiled all the way through Dodgeball. Janet couldn’t tell me what she found so funny about the movie but at the same time she could hardly stop laughing even as I turned out her lights at 11:05. Great day. Great week.

#TSJ Breaking News. Janet stands unassisted.

I’m very excited to tell you all that at 10:42pm PDT today, Janet stood unassisted!

We had finished getting ready for bed and while transferring from wheelchair to bed I had her stand up nice and tall while I held onto her. This is a common end of the day thing and I try to see how much of her weight she can take. Tonight felt different right from the start and her feet looked to be planted firmly on the floor so I let go and could feel her trying to keep her balance. It took a couple of tries then she actually stood there all by herself for maybe two or three seconds. She repeated it twice then I gave her a rest so I could set up the iPad to record it in case I was dreaming. Here’s the video, not the best angle but what do you expect at this hour?

Easy as 1,2,3. Janet returns to domestic duties and more. #TSJ

Another progressive week for Janet with some interesting trends starting to show.

On Thursday Janet was basking in the sun waiting for me with a big smile and a self initiated kiss. When I asked her why she was waiting for me she said “now we can have some fun”. Nice to know that she still thinks that way sometimes as most of the time she complains about all the things I make her do. To start our fun we went for a nice long walk. Janet is improving with her directions and did well at naming things we saw along the way. We really took our time and I tried to keep her talking and observing as much as possible. As we returned to Connect we noticed the ice cream stand was very busy and I suggested we go there after dinner. No surprise, that got a very positive response. There was a CFL football game on TV as we waited for dinner and to prove her cognitive gains Janet said she was cheering for Saskatchewan over Toronto. That’s my girl. Not that I really care, as real football doesn’t start until September but it was still fun to hear her pick against her hometown. Janet had a good Shuttle routine and shocked me by choosing to do the Standing Frame before going for ice cream. There was a real risk of missing the ice cream by doing this but I had to honor her choice. We made it to the stand in time and Janet enjoyed her mint chocolate chip while spilling only one little drop.

On Friday, Janet was waiting on the patio again but was a little upset that I wasn’t there sooner. It was only 1:30 but I guess she’d had a fairly quiet day so far and was aware she would be going home with me so was looking forward to that. We made some shopping stops along the way, one of which resulted in Janet getting some clip-on sunglasses. She’d been refusing to wear her regular ones as she can’t see well without her prescription glasses so her optometrist suggested the clip-ons and I think they work great. Janet doesn’t mind wearing them so if nothing else her eyes get some protection now. By the time we got home it was too late for a nap so Janet just had a little quiet time lay down then got ready to go for dinner with a friend of ours from Nanaimo. The Rotten Grape turned out to be an excellent choice as we were able to sit outside in the sun listening to the Music in the Park happening right across the street. We even had a visit from Janet’s former PT, Tom. It was really nice to enjoy good food and conversation with Wendy and Janet really impressed us by sitting on a backless stool the entire time.

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After a good hot tub at home and while getting ready for bed Janet called Nash, Calamity. That was the name of one of our cats that died a few years ago. Janet realized that almost as soon as she said it but was upset that she didn’t realize Calamity had died. Took her a good fifteen minutes to get over it.

We were up pretty late Friday so Saturday started off late with a nice Skype chat with Mary/Gaga. I then put Janet to work as we cleaned up the spare room in preparation for Laurel & Raj 2.0. Janet had fun with lots of laughs as we found things we hadn’t seen in a long time, one thing in particular I hope you’ll here a lot more of in the near future. Stay tuned. The more I get Janet to help with domestic stuff the more I realize how much she wants to contribute. She really goes at a task with determination and concentration and is visibly pleased when its done, usually asking if there’s anything else to do. That is, as long as she feels she can do it but occasionally now she’ll take my suggestion that she can do it and run with it. Previously my suggestion was met with self doubt. I’m seeing a little less of that now. Almost as impressive as her domestic enthusiasm was Janet’s choice for lunch Saturday. Grilled cheese with BACON! Totally her idea, never seen her eat it before and did she ever eat it. That gave her enough energy to do a little house hunting with me followed by a stop at the grocery store. Wanting to press on she insisted we go to church which turned out to be a good call on her part. She was able to have nice visits with quite a few people there and the service was really good too. Our evening was quiet and Janet wound down nicely to wear she was sleeping by 10:30.

Start time Sunday was a little more normal but Janet maybe should’ve stayed in bed a little longer as for once she picked the wrong puppy on Pick a Puppy. She’s now three for four and was a little upset about being wrong. We went for a rather long walk to a local store for some dinner supplies and Janet asked to take a shorter route home so I guess it was a little long. Our thirty degree pool water was too cold for Janet so after a relaxing hot tub I laid her down for a good nap. We had another hot tub after dinner then Janet passed on ice cream in favor of going to bed. Lights out at 9:45 seemed strange but sleep is good.

Janet’s sleep must’ve been good as she woke Monday very chipper and chatty. She wasn’t really looking forward to going to the rehab pool as her mind was very much on the impending arrival of family for Laurel & Raj 2.0. Janet is having a bit of a tough time realizing this is not a full on wedding and she worries about her appearance and abilities. I think once people are in town and things start happening she’ll be fine. Her swimming was decent with her most notable accomplishment being able to swim to the wall, grab on and “stand up” all by herself. Really nice smiles after doing so too. On our way home we did a little more house hunting and Janet asked afterwards why we didn’t look at the upstairs. It didn’t have one. At least she’s thinking. Needing to do more cleaning of the house I decided to test Janet’s vacuuming abilities. She was never very fond of this chore but loved it this time. She can only do the hardwood and furniture as she can’t maneuver herself around on the carpet. Here’s a link to a short video of Janet in action,

.She was also a huge help in dusting some shelves and nick nacs and again I could see the satisfaction she was getting from being able to help. Relaxing in the sun with a Fresca Janet explained she was afraid she’d miss something if she wasn’t coming home until Thursday. She also came out with the comment that “it’ll be awkward having Chris here”. Chris is Janet’s first husband and their parting was not amicable but I assured her he would be polite and so should she. Janet hasn’t talked about the battles she went through in that former life since she got sick but I hope the encounter on her home turf on a happy occasion leads to truly forgetting all that nonsense and moving on. It will be fun to see. Janet and I had a lot of fun eating dinner outside on an absolutely gorgeous evening and it was really difficult to gather the motivation to head back to Connect.

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By the time we got there Janet was pretty much done and after a little bedtime reading it was lights out at 9:30.

After a busy Tuesday morning I met Janet and Brian at KGH for her appointment with Dr. McCann. The main goal for this one was another round of Botox, this time, both hamstrings and a little in her right arm finger flexors. The previous treatment was a huge success and we are looking forward to similar results this time. The decision to treat the finger flexors came as a result of Janet clenching her right hand less and its hoped the Botox will enable even more relaxation of that hand. Dr. McCann agreed to refer Janet to the hand clinic at KGH where they can make a brace she can wear during the day to further promote a more relaxed position for her right hand. The next round of Botox will be in three months or so using Dr. McCann’s new machine that will allow him to treat Janet’s right subscapularis in hopes of increasing range of motion for her right shoulder. Another big plus that came out of this appointment was the discontinuation of Baclofen. Janet had a terrible reaction to an increased dosage a few weeks ago and the amount she was still on was too low to do any good so now its one less drug for Janet. Yay! Brian followed us home as best he could and took a look around the house to assess what he’d do if we were determined to stay here. We ended up agreeing it doesn’t make much sense then we enjoyed a nice cold beverage in the sun. Janet later commented that its nice having Brian around, “he’s easy to talk to”. Not surprisingly Janet enjoyed herself in our pool with the water being a ridiculous 32 degrees. She still wanted to hot tub afterwards too so I was able to get a good stretch and start working that Botox into her. Quite the busy day so far and Janet easily agreed to have a short nap. I woke her an hour later and positioned her so she could watch for Laurel’s arrival. I really wish I’d recorded that moment as it was absolutely priceless when Janet started giggling and smiling and laughingly saying ” there’s someone here! It’s her, it’s Les, Na, Laurel!” I thought she was going to cry but she just kept on giggling and waving like a star struck little kid. Awesome. The excitement continued as we went back to Connect for a Shuttle and Standing Frame session. Janet was very cooperative I think because Laurel was there and did a good job on both apparatus. There was very little pouting and once given the goal time for getting down from the Standing Frame did a great job using her watch to tell what time it was and how much time she had left. That was a pleasant surprise as she was bang on with fifteen and five minutes remaining. That watch has been a very effective tool so far. Well done Jess! While in the Standing Frame Janet demonstrated more cognitive abilities in correctly identifying Sally Field in a movie that was on TV. Impressive.

Wednesday morning the focus was on Janet’s regular therapy routine. She went to the gym for a thorough workout then had Speech with Mary Lou. Laurel and Heather met up with their mom in the afternoon and hung out until bedtime, making sure she got in another gym session. When I arrived with Andrew late into the evening Janet was talking very loud and clear, was obviously excited to see her kids and I think is going to have a really fun time this weekend.

One of the more noticeable improvements Janet has made over the last few days has been in the quantity of liquid she will drink at one time. Historically her drinks have been very tiny sips. Now they are not near gulps but I’ve seen her do what would qualify as a shot more than a few times. She still needs to be reminded a lot to keep drinking but there is a definite increase in the speed with which she can down a beverage. The volume of her voice has gotten louder and she is definitely more “with it” than she was even a couple of weeks ago. Praying for continued healing, an increase in her water intake, for the Botox to have maximum effect and for everyone to enjoy themselves at Laurel and Raj 2.0.

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Freedom 55. Janet gets hungover before her party. #TSJ

Another roller coaster week for Janet that started out really strong then took a huge dip in the middle with a nice bounce back to finish it off.

Last Thursday was a stellar day for Janet with strong workouts in the gym, good results from her Speech Therapy and a display of heightened awareness that had me excited about the progress she’s making. Curtis had her in the gym late in the morning and he generally puts Janet through a very thorough routine so when he says she did well, it means something. I saw proof of how well Janet was doing that night when she allowed me to take her onto The Shuttle. That dreaded machine from the past that used to produce nothing but tears and anger. This time Janet was totally focused on doing the best she could and her performance was record breaking for me and a really good demonstration as to how much stronger she’s gotten. Instead of blowing off my compliments she seemed to somewhat accept them this time. Janet followed up her Shuttle performance with a nice hour long session in the Standing Frame. One reason she was able to hang in there so long I believe was, she was totally engaged in a TV show called Criminal Minds. There was something about it that drew her in even to the point of knowing “they are trying to catch the Anthrax guys”. Brilliant. Another example of Janet’s increased awareness was demonstrated during a first time Skype chat with her friend from years ago, Dianne and her daughter Whitney. I could see the memory lights flashing in Janet’s eyes as the conversation progressed and there were lots of smiles and laughter on both sides of the screen.

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So ended a real “up” part of the roller coaster ride as Friday started a big “down” turn. After weeks of chasing faxes around from office to office it was finally arranged to increase the dosage of Baclofen for Janet in hopes of alleviating some of the spasticity in her legs. There was to be a gradual increase to triple what she’s been on for about nine months now starting with a doubling of the dose Friday morning. Janet’s day started out quiet with some sit to stand exercises and a little Speech with Alana. I picked Janet up and took her swimming at KGH and her own evaluation of the sessions was “ok, but not as good as last time”. Pretty accurate as she seemed tired. We stopped for a few groceries on the way home and Janet was a big help in the store, enjoying picking out vegetables etc. By the time we got home it seemed too late for a nap so I agreed to let her try and push through thinking we could have an early night. As we started making pizzas it became quite clear she wasn’t going to make it. She couldn’t figure out for the life of her how to chop a mushroom, something she’s done routinely in the past. Off to bed she went and we tried again an hour later. The nap refreshed her enough to enjoy building her pizza and eating it outside in the sun. We watched The Voice afterwards and Janet spontaneously started singing to The Swon Brothers rendition of Danny’s Song. Cam called and had a nice chat with his mom then the roller coaster started downhill real fast. Seemingly out of nowhere Janet lost all that awareness that was so prevelant the last couple of days. The only way for me to describe it is she got stupid. There were lots of tears of frustration, lots of unrecognizable speech and it was very difficult for me to maintain any level of patience. Janet insisted on a hot tub before bed and I was happy to oblige her that and it relaxed her enough she could settle into bed and fall asleep just before ten. She woke up on her own around 9:30 Saturday and seemed ok. She managed a good breakfast but instead of the usual morning fog lifting as she ate, it seemed to grow thicker. Her speech deteriorated, her ability to drink from her glass dissappeared to where she couldn’t even suck water through a straw. It was too late to call off a scheduled visit from her friend Janet F. and when she arrived Janet perked up a little and enjoyed the visit but was very quiet. I took her out for a walk afterwards hoping the sun would energize her. We watched a little soccer at the neighbourhood school but Janet couldn’t “see” the teams we were watching despite their bright yellow and blue jerseys. Home we went and I was starting to get a little concerned. Janet ate a sandwich and happily went for a nap which ended up lasting six hours. During that time I read about every possible cause for her rapid decline and settled on an intolerance for Baclofen. That’s the only thing that changed recently so that had to be it. When Janet woke and only wanted a piece of toast for dinner I started wondering if there was anything else going on but since she had been eating well up until then and was toileting fine I decided to let her try and sleep it off some more. Sunday morning started comparatively well as Janet seemed more coherent and ate a good breakfast. Her speech was better but there was still a lot of gibberish there. She made it until 12:30 before crashing until four when I made her get up to have some water and hopefully some dinner. Her drinking ability had improved and she ate well at dinner. Overall I was less concerned even though she was nowhere near regular Janet. She was following commands well and eating and drinking and not showing any signs of serious illness. Janet was in bed by 8:30 and sleeping before I finished our goodnight prayer. Monday morning I phoned nurse Jen at Connect and she agreed to let me hold Janet’s morning dose of Baclofen. I also talked to Dr. McCann’s office and he later agreed to drop her prescription back to the level it had been at prior to the weekend. The roller coaster started an uphill climb almost immediately.

After an almost three hour nap mid day Monday we headed off to see Janet’s GP who was pretty confident Janet’s “down” weekend was the result of the Baclofen increase. We aren’t calling this an overdose like the Dilantin episode as this time the drug doesn’t seem to agree with Janet as opposed to Janet having too much of it in her. By Monday evening Janet knew my name again and was starting to argue about going to the gym so I knew things were OK. She ate a little dinner, tolerated thirty minutes in the Standing Frame and knew when the TV show we were watching ended that it was time for her to get down. She was smiley and giggly as I put her to bed and I was very relieved.

For the first time since this all started I made a phone call to Janet. Tuesday was her birthday so I called when I knew she’d be eating breakfast to wish her happy birthday and also to assure myself she was alright. Her laughter and strong voice were all I needed to know this was going to be a good day. I arrived at Connect in time to observe some of Janet’s singing with John session and noticed there was more laughter than singing going on but that is very theraputic itself.


Janet agreed to have a nap after John left so she could be ready for all the birthday Skype sessions coming her way later in the day. We probably did a few too many back to back but it was funny to hear Janet wish everyone else a happy birthday as they said that to her. Janet and I enjoyed a nice dinner at a local Italian restaurant including a glass of wine and we gave her the night off from any gym related activities.

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She was happy to watch a very entertaining basketball game before going to bed.

Today Janet was back to her regular self if not a little more than that. I gave her time to nap and when I finally went into her room she put on a huge smile and we chatted on her bed for half an hour with her talking really well and laughing lots too. As she was getting up, Brian stopped by to see some of her pole transfers and mentioned how impressed he was by her standing abilities. Janet has made a lot of progress in the last few weeks. From there she helped Curtis prep dinner and when it was ready devoured her portion along with an apple and a generous slice of a very delicious cheesecake Jess made for her birthday. Even after that large meal Janet managed a good session on The Shuttle and elected to use the Standing Frame rather than do some stretching. We used a different frame tonight which proved to be not as good as the usual one but it was worth a try. Janet has an appointment with Dr. Miller (neuropsychologist) early in the morning so I tried to encourage her to go to bed around 8:30 but she waved me off “saying” she’s watching the hockey game. I gave her a few more minutes and thankfully Chicago scored to end the game and off we went.

I know the roller coaster is not likely to end but I hope for Janet’s sake we don’t go on a ride like this past week again. I’d much prefer a steady climb upwards. I asked Janet to finish off the video tour of Connect but she wasn’t interested and instead wanted to say thanks to everyone for the birthday wishes. After a great many takes this is the best we could get and I think it shows pretty clearly how hard Janet is trying. I’m praying that strong effort continues and that she is rewarded with ever increasing abilities.

Lack of Movement. Tough day for Janet. #TSJ

Garrett was helping Janet off the toilet when I arrived at Connect this morning and toilet talk would dominate our day from that point on. On my way to Janet’s room Lorne informed me that they had noticed a little blood in Janet’s pad when they got her up this morning and then a little in the toilet when they put her on there first thing. They did a quick check and asked Jen to look as well and it was determined that it was something to keep watch of but not a huge concern right now. Janet was in good spirits and not complaining of any pain at all. Off to the pool we went with a plan to return to Connect as soon as possible so Tez could work with Janet at the parallel bars.

We always get changed in the only washroom in the KGH Rehab Pool area and I sit Janet on the toilet while I change her partly to give her a chance to pee before swimming. We got all changed and I waited for her to try and pee but it was a no go so I stood her up to pull up her shorts and noticed blood in the toilet along with a very small stool. Janet was feeling fine and had no idea what was happening, there was a drip of blood every ten seconds or so and nothing else. I cancelled swimming got her dressed and called her GP. She of course was booked solid all day and suggested a walk in clinic or the ER and since we were already at the hospital we went over to the ER. That turned out to be a good decision and five hours later we were out with a prescription for a stool softener, one that works apparently, and a jug of Peg-Lyte, a colon cleanser. The doctor that saw Janet had an abdominal X-ray done and that showed everything as it should be except for a lot of stool build up, hence the two parting gifts. He also ordered a colonoscopy as soon as possible as the blood is coming from inside somewhere. He gave no indication as to what may be wrong but at the same time didn’t seem overly concerned and said Janet can carry on with normal activities unless the bleeding increases. Then he would want to see her back in the ER.

Janet was a phenomenal patient today. Staying awake the whole time and not complaining at all. I kept giving her sips of water even though there are signs all over the ER saying no food or drink until you’ve seen the physician. We didn’t get any food at all though but I think I felt that one more than Janet did. Janet was asked her birthdate by a lady taking a blood sample from her and she said it loudly and correctly right off the bat. I was impressed by that and by a few comments she made along the way like, “you must be getting tired of waiting here” and “Isn’t the doctor supposed to come and talk to us now?” She is a real trooper.

At 5:15 we were in the car (no parking ticket surprisingly) and calling Connect to let them know we were on our way back. Bob had held off cooking Janet’s salmon so ten minutes after arriving she was eating a nice meal. A few minutes into it she asked to go to the bathroom and had her first of two small bowel movements of the evening. There was blood associated with both but not any that was constantly dripping and Janet is not in any pain at all. She finished her dinner and an orange then half ways agreed to go for a bike ride. I really insisted on trying that as she had been sitting all day and we missed the pool and the workout with Tez. I didn’t push her at all once on the bike as it was late and it had been a long day. She still managed sixteen minutes of pedalling at mostly thirteen rpm. High five!

Surprisingly she wanted to read before bed so out came Slow Dance and into lounging mode went Janet. I read while she sipped water and wound down. By the time I turned out the lights it was 9:45 and Janet was finally ready for sleep. That was a tough day but I’m confident we will now get some good answers as to what’s going on or not going on with Janet’s bowels and hopefully start on a path to improving that situation. Once again the staff at KGH could not have been better (a little quicker perhaps) and we continue to get good support from the team at Connect. Praying for a restful night for Janet giving her the awareness to drink her two cups of Peg-Lyte tomorrow morning and to have a much better day than today.

Tan Lines. Janet basking in her glory. #TSJ

Jess said Janet had reluctantly gone to bed for a nap around 1:30 and could be sleeping when I arrived just after two. I left her alone for a bit in hopes she was but when I tried sneaking into her room at three she was looking at me with a huge grin on her face and said she had not slept and was just listening to music. She described her day as OK and said she had done “nothing”, except have breakfast but that was only toast with jam. Garrett later confirmed that Janet said no to a shower and no to the gym this morning and had a decent sleep in. That seems to be common for Monday’s so it’ll be interesting to see how she does in the pool next week.

Janet started getting up from bed and I asked her what she was doing. She told me she had to go to the bathroom so once she was up I got her over to the toilet and away she went. Another good sign of improved awareness. We then headed for the patio and happy hour. Janet devoured an orange and drank her water while I read the comments on our video that so many of you sent our way. Janet is truly encouraged by the feedback even from those of you we’ve never met. In fact some of those comments have gotten the most reaction from her. She still struggles a little with thinking she didn’t look good or do good in the video but the more feedback I read her from all of you the better she feels about it all. Thank you!

Garrett and I convinced Janet to go to the gym before dinner and she returned from a good workout an hour later with a smile on her face. She did seem a little confused at times this evening. Giving silly answers to simple questions and not knowing some basic family questions. When we Skyped with Andrew after dinner she thought he was her brother and even told Garrett that later. Andrew asked Janet about the church video and Janet couldn’t remember what he was talking about even after a pretty good explanation. I played it for her after we talked to Andrew and it all came back to her minus the crying. Yay! She never seemed to be in a state of total confusion so I’m not overly concerned but I would like to get in and see the neurologist sooner rather than later.

The first of each month is weigh in day for everyone and Janet logged another gain. She wisely said “that’s a lot” when I asked her if she thought she weighed 412 pounds. She did guess 117 pounds which is not too far off. As long as I’ve known her she has feared being too big so she always looks a little concerned when I tell her she’s gained weight but I’ve given her an arbitrary goal and we’re not there yet so all is well. As part of reporting her weight to Garrett I had Janet take some Easter candy that Kiko kindly dropped off today to share with those that were hanging around. Janet smiled the whole time she was offering the treats and seemed genuinely happy to be doing it. It’s good to share.

Before bed, Janet asked if I would read some Slow Dance to her. We certainly aren’t moving through that book very fast and it’s too bad because what we read tonight had a lot of similarities to Janet’s experience. She even shot me a few knowing glances as I read. Again, more awareness. The bedtime routine went well and because Janet didn’t nap this afternoon the lights were out a little earlier than usual. All things considered Janet had a pretty good day and even has a little tan line starting on her chest. That’s why we live here folks.

Praying for a restful night that enables lots of healing and brings energy and awareness for a productive tomorrow.

Music to My Ears. More singing for Janet. #TSJ

Today, Janet, Mary Lou and I met with a music therapist, Stephanie. I’ve long been searching for an accredited MTA that could work with Janet and thanks to Brian and friends we found a possibility. The timing as far as Janet goes could not be better as she seems to have fully rebounded from her Dilantin overdose and is offering much more in the way of starting conversations and expressing her opinions. Stephanie outlined how she would work with Janet and although similar to what John does she has a more clinical approach and will aim for the same goals Mary Lou has for Janet. Namely, increasing the volume of Janet’s voice and improving her ability to find and use appropriate words. The meeting went well and Janet seemed to like Stephanie so dependent on what exactly she proposes I think we’ll give it a go. Janet will still do the sing along stuff with John as every little bit helps and Janet has fun with him.

I convinced Janet to have a nap after the meeting and she did so for over an hour and a half giving her good energy for the rest of the day. She had a good Skype chat with Leslie and is excited about the possibility of her and Gavin coming out for a visit at the end of June. In fact she could hardly stop talking about it every time she was asked a question about her family which seemed to happen a lot today. I grilled her after she woke up from her nap then Garrett and Connie started in on her after her nighttime gym session.Janet is much more confident in her answers now and needs less prompting to get them correct.

We sat outside for happy hour again and Janet was very chatty and maybe even a little restless as she kept working her left leg to move her chair back and forth. Once she moved ahead while drinking her water, hit the patio railing and spilled a bunch of water all over herself. She thought that was very funny and it was. Connie was in the house this evening after her trip to England. We had a nice chat with her about her trip and Janet was really glad to have her back and enjoyed hearing about her trip.

It took a lot of convincing to get Janet to go to the gym with Garrett tonight but eventually she relented and of course came back all smiles and somewhat accepting that it was good for her. Garrett is very good with Janet and we are blessed to have him working with her. He reported that Janet did well with her stretches tonight even getting onto her tummy herself and staying there for three minutes or so with no discomfort. Previously it was a huge struggle to get her onto her tummy and she always seemed in a little pain while she was there. This is a nice improvement that Janet credits to “doing it lots of times”. High five!

To help her wind down and enjoy the rest of the evening I got her a cup of tea and we watched some Ellen on YouTube. Janet laughed out loud at a couple of the clips and was genuinely touched by one of the sappy ones we watched. That’s the most reaction I’ve gotten from her watching YouTube and speaks to her continued rise in brightness.

This was another encouraging day with Janet. She was strong on all her transfers today, she talked well 90% of the time I was with her, participated well in the meeting with Stephanie and Mary Lou excitedly reported that “Janet is back and then some” in regards to her speech therapy. It had been a tough few weeks for Mary Lou when Janet was going through the Dilantin overdose so it was nice to see her all fired up again today.

Praying for a night of deep rest and healing that brings lots of energy for tomorrow.

Just Floating Along. Janet goes “swimming”. #TSJ

What an exciting day! I knew today had potential and I couldn’t be more happy with how Janet was from start to finish. It wasn’t all ups but there were enough of them to make this a stellar day and judging by the big grin on Janet’s face as I said goodnight she is satisfied with what she did too.

I arrived in time to get her ready to go to KGH Rehab for her session in the pool. She was waiting for me in the living room with a big smile and I could sense she was a little nervous about the swimming thing. Excited but nervous. She took a while on the toilet before we left so instead of being all pool ready underneath her clothes we would have to get changed there. I should have expected the next delays as the hallway to the pool goes right by the rehab gym so Moira and Rob both came running over as soon as they saw Janet and the reunion was on. Janet kept saying she didn’t remember any of the area or the hospital as we approached but as soon as she saw Moira her face lit right up as it did for Rob. I think that gave her a nice confidence boost for the task at hand and she didn’t seem nervous about the pool at all after that. Moira guided us to a bathroom we could change in but it was locked then I remembered one in the other hall so we went there and donned the swimming attire. There are change rooms in the pool area but the only private one was in use and pool guy, Jim, was nowhere to be seen. He saw fit to chastise me for using the washroom we did and told me to make sure we stay in the pool area to change afterwards. He seemed nice when we talked on the phone but after encountering him in person today I think he’s a bored man that needs to find something more challenging to do. I transferred Janet into a waterproof wheelchair and we walked out onto what would become the water. There’s a biblical joke there somewhere. Anyone? Jim gave us a small inner tube so Janet could float and then lowered the floor. Janet started floating long before the floor maxed out and it was very exciting to see. She was smiling and laughing at the sensation and was very relaxed and “at home” the whole time.

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I only knew what Tez wanted me to do with Janet as far as exercise goes and Jim just said “float around, get used to it”. Janet was used to it in two minutes so I had her try kicking her legs. That was tough at first especially as her right leg was drifting over her left one which was bent back at the knee quite dramatically. The more time we spent in the pool the more Janet loosened up and for the last ten minutes she was kicking and propelling herself through the water. She instinctively started using her left arm to paddle as well and looked totally at home doing it. I tried standing with Janet a few times. Each attempt was better than the previous and involved her touching bottom with her left foot and me guiding her right to where I could step on both feet and hold her down. I then straightened her lower back slowly and could feel her hips and pelvis move in a way I’d not noticed before. Everything felt more relaxed and Janet said she felt good, no pain.

Our thirty minute session was over super fast and Jim showed us the correct change room to use. Janet was cold as soon as we were out of the pool so good thing I brought her large beach towel to wrap her in. On our way out we went through rehab and stopped at the nurses station where a gaggle of nurses marveled at how good Janet looks. One nurse who worked with Janet on 4b actually started crying when Janet smiled and loudly said hi to her. Awesome moment.

The pool experience deserved a reward and Janet agreed ” it would be nice” to go out for lunch so we went to Original Joe’s and had a very civilized long lunch date. That cut into Janet’s nap time which she protested all the way into bed but was snoring three minutes later. Unfortunately I had to wake her forty five minutes after so we could get to her doctor’s appointment. We made some minor changes to the Dilantin dosage, capsule form instead of liquid, and she has sent a referral into the neurologist. The constipation issue has obviously been resolved but I asked her to instruct us as to how much fluid Janet should be drinking in a day. She pointedly said to Janet, one cup before and after each meal at least. Try to get two more in there somewhere but at least those. I hope hearing it from her doctor will help motivate Janet a little more.

It was just us for dinner by the time we got back to Connect but Garrett and Bob hung around to chat a little then Jess and her little niece came by to encourage Janet to come up to ladies night. Bad timing today but hopefully next week. Janet happily put her laundry away and helped me make her bed after watching a little March Madness. She very contentedly lay down in bed a little earlier than the last few nights after a busy and fun day. This was the Janet of three weeks ago that had Mary Lou all excited about her speech potential. I think as long as the Dilantin levels don’t rise Janet has a good chance of really advancing from here. Praying for a good nights rest and an equally bright and energetic day tomorrow.

Thirsty? Not Janet. #TSJ

Just to see how things were going and to make sure Janet was OK to sing with John today I called in to Connect this morning. Jess reported Janet seemed brighter and was talking well right from when she got up. Everything seemed like it was a go.

I intentionally stayed away to let Janet have her sing along time then a nap and she was sound asleep when I arrived and stayed that way till around four. She was a little bit out of it when she woke up but came around fairly quickly and well enough to have a decent Skype chat with Leslie. The first one with her in three weeks and I could tell Janet had stepped up her game as soon as the connection was made. She still has difficulty lasting more than twenty minutes but that increased focus is good for her.

As usual this was Janet’s night to help prep dinner and her first task was shredding cabbage. Really hard for me to do never mind her so she moved on to measuring and adding spices then Garrett took her down to help with some laundry and said she did really well, measuring detergent and loading the machines. One of those crazy things she loves to do. We had time to Skype with Mary/Gaga before dinner was ready and Janet managed to talk fairly well and blew her mom and Keith lots of kisses at the end. Janet ate a good dinner and has shown no signs of a diminished appetite at all but the battle continues in the drinking department. She took a few good gulps right after she got up from her nap but I had to nag her constantly after that and got limited results. Jess said it was the same way the first half of the day with her and Lorne. They would ask, remind and insist, each time getting a mostly negative response. When it’s explained to her how important it is she seems to listen and understand but won’t follow through.

Garrett took Janet to the gym after dinner and had a really good workout with her saying she did really well getting herself onto her tummy and back again. There was no indication of pain anywhere and no tears. Yay. I was surprised how long she lasted in the gym as her workout ended when she is usually tucked into bed. Still having some energy she snacked on an apple with Fred and me as he savored his big win at poker tonight. I’m trying to convince Janet to play sometime but the gym is better for her.

Quite a nice improvement in Janet today again. She is no longer arguing about the afternoon nap, she didn’t complain of any unusual pain today, she ate well and talked well at times but there were still frequent moments of Klingon. Both John and Jess reported that the sing along session was a lot of fun. Janet was not any louder but was very smiley as she sang away. Jess caught her singing Who Let the Dogs Out on the toilet afterwards. I finally spoke to her doctor and she will send a referral to see Dr. Adams the neurologist as soon as possible and I’ll take Janet in to the GP Thursday after swimming. Hopefully we can get some solid answers to the Dilantin questions and Janet’s overall condition soon. With her improving so much now I fear we won’t know what was wrong on the weekend but I’m glad to see her brightening up.

Praying for a night of deep rest and healing that brings lots of energy for tomorrow.

A Moving Monday. Janet rebounds a little. #TSJ

Hoping to get answers to Janet’s lethargy and pain I called her doctor’s office first thing this morning and got the impression I wasn’t going to be able to speak to her as she was booked solid. The lab results had arrived and were just faxed to Connect before I called so that was my next call. Jess reported Janet was OK, oddly complaining about sitting up whereas yesterday the complaints came about laying down. She was slowly drinking a smoothy and seemed relatively fine but Jess had no intention of taking her to the gym or anything like that. Nurse Jen and I talked about the lab results which indicate that Janet’s Dilantin levels are within the therapeutic range but at the low end of it. I’m surprised by that and even more concerned now about Janet’s tolerance for that drug. There are a number of things that could be affecting her though, bladder infection and dehydration primarily. Jess just missed a chance at a urine sample before I got in this afternoon and will try again in the morning and as far as the dehydration goes I don’t think Janet is but she can certainly drink more and maybe needs to do so to overcome the effects of the Dilantin.

Jess had just put Janet to bed when I arrived about 1:30 this afternoon saying the first part of the day had gone fairly well and Janet ate a decent lunch before nap time. She was awake when I went into her room and we had a brief chat before nurse Jen came in to examine her a little. Janet’s vitals are normal and there is no evidence of anything wrong other than she’s a little pale and complains of pain from time to time. The problem is she indicates the pain is in a different part of her body every time you ask her. One area that does get mentioned a little more than others is her left butt cheek. I can’t trigger a pain response there but she does touch it sometimes when asked to show where the pain is.

Jen left just after two and Janet was snoring minutes later and continued till 3:30 when Bob stuck his head in the door on his start of shift rounds. Janet fell back to sleep quickly and save for one more brief eye opening slept loudly till 4:50. It took a little while for her to get her speech going but once up in a sitting position started to come around a little quicker. By the time we were in the kitchen for dinner she was pretty bright and happily started drinking her water then ate a large dinner complete with one of Sandrine’s macaron for dessert. Thanks Kiko and Brenda!

I tried getting Janet to make her March Madness picks the way she used to, by choosing the team with the nicest uniforms, but I couldn’t find a website that made it easy to do that so I just had her pick the name of the team she liked best for each match up and she ended up picking Indiana as her winner. A pretty good choice I think. It was movie night in the neighboring house and Janet agreed to go over there with me to watch for a while. Unfortunately the movie was one of the Pirates of the Caribbean sequels which Janet found to be very uninteresting but she enjoyed being there with the other residents and hung in for about an hour. I gave her a bio break once we got to her room and she thankfully and surprisingly had a bowel movement. I was way more happy about it than she was and she says she wasn’t feeling any better because of it. Still a really good sign and hopefully Janet will realize some benefit by the morning. We read some news articles on the iPad for a while after that. I asked her to read and she would get two or three words at a time but no more and was starting to lose her speech and agreed to go to bed at 8:45. I was pleasantly surprised at how long she lasted tonight and by her increased brightness and I must credit the long nap for that. To me Janet is still showing signs of an intolerance to Dilantin and there probably is something else going on but today was much better than yesterday.

Janet’s doctor never returned my call but I’m confident she will tomorrow and I plan on taking Janet in to see her Thursday after swimming as long as she doesn’t get any worse. It certainly appears she’s getting better but we still don’t know the cause of all this. Praying for another restful night and an even brighter day tomorrow.