Recovery

It’s late and I can’t think of a title. Hope you’ll read anyways. #TSJ

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Even though Janet will complain sometimes of having to do the same things over and over again there are a lot of new things in her repertoire and this past week was full of them.

On the cognitive side Janet continues to become more aware of the moment she’s in as well as her overall situation. This past Monday while on our way back to Connect Janet took a big step by saying “I want to be a regular person”. The day had been very successful for her and included Janet doing a lot of “regular person” things and when I pointed all those out to her she seemed to accept that. I discussed this with Brian and he said that Janet accepting her situation is a big step towards continuing the recovery process. It’s only after someone acknowledges where they are at that they can really start to do something about it. Janet has done well so far so I see this as a positive sign of her maybe being able to work even harder as in not complaining about the gym or drinking water. That of course remains to be seen but maybe with everyone trying to get her living in the moment and pointing out her accomplishments she’ll start to believe in herself more. Her confidence is growing in her singing for sure and this week was her loudest by far. John called me into the room just five minutes after starting with Janet on Tuesday and she wowed me with a very loud rendition of Do a Deer. I asked Leslie and Gavin to come in after that and Janet sang loudly for them too. A couple of times this week Janet started singing along to performances on The Voice, most notably The Swon Brothers rendition of Danny’s Song. She sang it again for us with John and was very confident in doing so. Her Skype conversations this week were solid but she’s getting bored with the whole thing and often feels she has nothing to say. I can help her with that part but am going to stop scheduling calls so they are more spontaneous and less of a chore. One night I worked with Janet from her Speech Therapy booklet and was impressed at how well she did naming opposites and matching categories. She continues to express her opinion more and more, unfortunately its more when she’s angry about something that she’s at her most demonstrative. Still, I see more and more of the former Janet coming out.

Physically Janet is really impressing me and some of the staff at Connect as well. The Botox really should be worn off now but we continue to get good flexibility from both legs and tonight Janet stood in the Standing Frame for one hour at ninety degrees and complained very little. The lack of complaining can only mean it didn’t hurt that much and that is cool. Garrett worked with Janet in the gym tonight for the first time since he got back from his vacation and he had all great things to say about Janet’s performance especially with the extension she was getting on The Shuttle. That’s a key one as the more she can extend the more strength she can build. She’s very confident in her pole transfers now and has no problem standing and holding onto the pole for a minute or two and can shuffle her left leg around pretty well. There’s still not a lot of control on that right leg but I still have hope for the future. On Monday Janet reached another swimming milestone by making her first unassisted 180 degree turn while swimming on her back. She smiled the entire time and of all the physical activities Janet does, swimming is by far her favorite. As much as she likes it though, Friday afternoons aren’t working well for her as she’s too tired so for now I’m canceling those sessions. We will use our pool at home on the weekends to compensate and continue with Mondays at KGH. As we were leaving KGH one day we snuck up on Rob the PT and I asked Janet to kick him. She happily obliged but did so with her right leg. First time I’ve seen her try that move. It was all from the hip but a very deliberate attempt to use that right leg. High five. Tez had Janet try walking in the sling at the parallel bars and said that went well enough to continue doing it. Janet found it very hard and I think until she gets more control of her right leg it will be a very difficult exercise for her.

Janet was scheduled to go sailing this morning with the Disabled Sailing Association but the weather was kind of iffy so the outing was cancelled. Janet isn’t really excited about it but I think it would be good for her to try so maybe next week. In lieu of sailing Jess took Janet to a pottery class today and reported that Janet enjoyed it and has started making a bowl. Janet says she didn’t like it and it was boring so we’ll have to see who wins out next week. I hope she continues to go as these activities will help get her mind off of the trips to the gym she dislikes so much.

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We spent Sunday afternoon at City Park in the sunshine cheering on those getting baptized in the lake. Janet really enjoyed the outing and was fascinated by all the support each person getting baptized had. Sunday also marked the first conversation Janet’s had with her dad in a couple of years and thanks to Skype it went quite well. Not a lot was said as neither have great conversational skills right now but it was great to make that connection again. The weekend ahead promises more adventure as Leslie and Gavin are here until Sunday meaning we get to do fun things we wouldn’t get to do otherwise like winery touring, and the weather is supposed to be Okanagan hot finally.

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Praying for Janet to continue getting stronger, louder and more confident.

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.

Sailing Along. A week of fun and success for Janet. #TSJ #fish #Nanaimo #Duncan

This has been quite the busy week for Janet, full of accomplishments and adventure. Each day can show improvement in many areas but can also show the lack of progress in others. The trend however continues upward.

Speaking of up, Janet now has two stripper poles in her room and she is using them to stand up virtually unassisted. All she needs is some prompting to get started and once she’s up, some help in stepping or pivoting to her wheelchair, bed or toilet. The staff work with Janet daily both in the gym and her room practicing her sit and stand moves and its really paying off. Alana kindly trained me today so I can incorporate pole transfers into my time with Janet so she gets even more practice and I get less wear and tear on my back and arms. In the gym, the bike has been out of commission for a few days but Tez feels she’s ready to ramp up the leg strengthening program and has put her back on The Shuttle. Curtis took Janet there last night and reported a very successful return to the machine that caused so much stress before. Janet was able to do way more than previous, proving her increased leg strength. Hopefully she remembers that and continues to build on it. The staff continue to stretch Janet daily as well and I continue to do so in the hot tub with good results. The Botox does seem to be wearing off and I can see another dose or two in Janet’s future. Despite the diminished Botox affect, Janet is able to stand nicely in the standing frame although she doesn’t enjoy it one little bit. We try and get her in there every evening for as close to an hour as she’ll tolerate and she is being very cooperative about it. Again, I hope she recognizes the benefits and keeps it going.

The one form of exercise Janet continues to thoroughly enjoy is swimming. She tries to tell me she’s not excited about going but every time she hits the water there’s a big smile on her face and all the tension leaves her body. Swimming on her back is her favorite and with my help in turning she can do ten lengths before showing any signs of tiring. On her tummy she’s easily doing a length with no shortage of breath. Janet is turning into a bit of a celebrity at the KGH pool as she was being loudly cheered on by the folks waiting for their turn on Thursday and swam so well that even pool man Jim praised her when we got out and he hardly ever says a thing. On Monday I tried having her stand on her own, take a big breath, put her face in the water then push off with her legs. First time and every time she took off swimming like a fish no problem at all. The standing part only lasts a second of course but its long enough for her to take a big breath and go. High five! Walking with control of her right leg continues to be a struggle and I’ve switched methods to where I’m bringing her right foot along while she moves and steps with the left. At least she gets the rhythm of walking and we can make it the whole length of the pool like that. I’ve even had her try it on land a couple of times and its worked well but I want Tez to see it before I do it anymore with her just to ensure I’m not risking an injury. We haven’t been in our pool at home too much yet as Janet oddly enough prefers the hot tub and that’s fine with me as she benefits from that immensely.

I seem to spend a lot of time talking about Janet’s physical recovery so lets see if I can focus on the cognitive for a bit here. A couple of things stand out right away, most notably her conversational skills. More and more often now Janet will initiate a conversation either by asking a question or making an observation and she’ll often give very intelligent if not correct answers to your questions now too. The various Skype chats she participates in each week show this. One with Cam last week and one with her mom yesterday went particularly well. Janet even remembers portions of those chats now a couple of hours later. I find her to be less likely to converse when there’s lots of people around but she does enjoy listening to others chatter and I think will gain the confidence to jump in eventually. Her voice may be getting slightly louder now and she is talking more intelligently. As long as she is reasonably awake I can talk to her a little bit in the car where before there was no chance of hearing her. I was shocked to see how well Janet can write now. The last time I tried with her she was doing a lot of loop de loops for everything but when asked to write Heather’s birthday card she produced this on the envelope and an equally good job on the inside.

20130612-235405.jpg Janet was very determined to write the card for Heather and it was that determination that made her attempts successful. I had her practice only a half dozen times or so and could clearly see she had the idea. Printing is much better than writing for her and she needs to work on how she holds the pen. Janet says she hasn’t been practicing but obviously she has and its working. I took Janet shopping for Heather’s birthday present and she did a great job of looking at all the options and deciding what would be best for Heather. She even showed genuine concern for the amount of money being spent. That was nice to see and is very much the former Janet.

Along with the successes in the pool and gym Janet had a good adventure this past weekend as we took a roadtrip to Nanaimo to visit my mom. The four hour drive to Horseshoe Bay was easy as Janet slept most of the way.

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The ferry ride to Nanaimo was alright save for a little toileting issue. We arrived at mom’s in time for happy hour and later enjoyed a nice walk on the pier where the yachts participating in the Van Isle 360 were tied up for the night.

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We enjoyed the hot tub in mom’s building before lounging a little leading into bedtime each day so all weekend Janet never missed her leg stretching opportunities. Saturday saw us all head south to Duncan for lunch and a visit with our friends Terry and Joy formerly of Kelowna and CedarCreek Estate Winery.

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Terry is now Vineyard Manager at Averill Creek Estate Winery and we thoroughly enjoyed the visit and the tastings there. Who knew the Island would have such a beautiful winery with some pretty decent wine?

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A very enjoyable afternoon! Mom joined us for the ferry ride back to Horseshoe Bay on Sunday and we met Ashley for lunch before the long drive to Kelowna. What a nice surprise to be able to sit outside in the sun in North Van!

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The drive home was good with Janet being quite chatty for the first couple hours and nice and sleepy the rest of the way. Janet went for her first hot tub in the dark when we got home and that was a very relaxing way to end a fun weekend.

Monday was back to reality day. I did let Janet sleep in and her pool sessions were very strong. Unfortunately for her she had a dentist appointment right after swimming but she was a good patient and allowed so much work to be done that her next appointment has been shortened as a reward. In between the pool and dentist Janet very seriously thanked me for “the grand program” I have us on. I wasn’t sure what she meant at first but she said it was for taking her to all these appointments and things. That was very sweet.

After a well deserved nap at home and with the dental freezing worn off Janet and I enjoyed a nice dinner outside then reluctantly headed back to Connect. It was such a beautiful evening and we were enjoying it so much it was very hard to get motivated and out the door. Janet very gamely got into the standing frame once we got there and lasted a decent thirty minutes. The stripper pole had been installed in her bathroom while we were away and on the first attempt Janet observed that “it’s too far from the dance floor”. I’ve no idea where that came from but it was hilarious. Saying goodnight that night was tough as I was enjoying being with Janet more so than usual.

Jess and the staff often have challenges getting Janet to nap in the afternoons still and they know Janet will only do so if I lay down with her sometimes. To make things easier for her, Jess made a drawing of my face and taped it to the extra pillow on Janet’s bed. I like the resemblance and Janet likes having me with her all the time.

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Today was another solid day for Janet as was the whole week. I continue to pray for complete healing and for continued increase in confidence and strength.

Stop and Go. A back and forth week for Janet. #TSJ

Early on in this journey I referred to what Janet and the rest of us were going through as a roller coaster. That analogy still applies but thankfully the peaks and valleys aren’t quite as dramatic or long lasting as they used to be and Janet’s rate of ascent is steady.

Her most obvious gains continue to be seen in the gym and during physical activities in general. Janet’s reluctance to go to the gym continues but her resistance to it is less dramatic and I’m hoping she’s starting to notice the positive results herself. I’m with Janet mostly for her bike riding sessions and can report that each day she sets a personal best for distance travelled. Today she made it .71 miles. Her rides are thirty minutes long with the focus on building speed in the hope of being able to add more resistance at some point as that would mean a significant increase in her leg strength. Janet’s tolerance for the standing frame isn’t improving much from what I’ve seen with those sessions maxing out at forty five minutes to an hour.

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There is tremendous value to it though and we saw a great example of that over the last couple of days. Monday night I was unable to get the frame set up optimally for Janet so she had a very short session. When I got her into bed and stretched her legs out as I always do they were very stiff. Tuesday night with Curtis’s help we got things set up nicely and Janet had a good long session standing nice and straight. Her goodnight leg stretch was a hundred percent better and I made sure she knew it. Since the installation of the stripper pole in her room Jess has been working with Janet on transferring from bed to wheelchair and vice versa using the pole.

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As Janet gains strength she’s getting better and better at the transfers. I still do a pivot transfer with her but no longer have to carry her weight as much as I used to and she can let herself down into her chair using the arm rest. My arms and back are liking this improvement. The team continues to work with Janet on sit to stands at the parallel bars and I’m noticing nice improvements in her ability to get up out of her wheelchair because of that work. All this exercise is paying off for sure and to prove it, Janet for the first time I know of rolled all the way over from one side of her bed to the other today! This may not sound like much but when you consider all the muscles you need to use to accomplish a move like that its very impressive for Janet. It wasn’t long ago that laying on her tummy would start her crying and she pulled off today’s maneuver with relative ease. High five!

Personal bests are also being reached in the pool with Janet now able to swim one length on her tummy. We haven’t yet figured out how to get her to breath so she can swim longer but its pretty exciting she can go that long holding her breath and propelling herself that far. Her right leg continues to mostly do its own thing in the pool and is impeding her progress for sure. I’m looking at ways to help her regain control of it but don’t see anything obvious. Janet’s attitude towards the swimming sessions remains positive but she is much more excited about hot tubbing, even asking a couple of times this past weekend if we could go. I feel truly blessed to have the ability to provide that for Janet as it is so therapeutic in so many ways. I’ve noticed and increase in the range of motion for her right shoulder and arm as well as her wrist and attribute that to the hot tub. Walking in the pool remains a challenge due to the uncooperative right leg but we practice each session and Janet is still willing to work hard at it. This past Monday after a good walking session I wanted her to swim on her back a little but she couldn’t. Seems she totally forgot how and it wasn’t till the next session that she figured it out again. Weird.

So far I’ve told you lots of positive things so let’s do some negatives now. Janet’s chronic constipation got to her again this past weekend and we ended up with a nice long visit to the ER because if it. The doctor was unable to get anything to move that night so put Janet back on the Resotran that had just run out a couple days prior. It works great and Janet is for now going regularly but the problem is not solved and we continue to wait for this illusive “urgent colonoscopy”. Restoran is not a drug you want to be on long term as your body can become dependent on it and you may not regain control yourself ever and that would not be cool. Pray for the colonoscopy and a visit to the GI unit soon. KGH treated us well that night although slow and I found it a little surprising to be driving home in the daylight at 4:15am. This past Tuesday we finally had our meeting with Dr. Adams the neurologist. He ordered an EEG for Janet just prior to our appointment with him and it was really cool to see how that is done. Janet had twenty nine electrodes on her head as they measured the various electrical discharges from her brain. Dr. Adams confirmed there are some epileptic discharges occurring so he is keeping her on the Dilantin probably forever. That’s not the news I was hoping for but at least now we know and we also know there is no other drug out there obviously better than Dilantin. My concerns have diminished as Janet is making cognitive gains and the side effects have diminished since she got into a therapeutic range with that drug. Dr. Adams described Janet as high risk for another seizure but is confident the Dilantin is working as she’s been seizure free for five months now. He does not see a need for Janet to visit or have an EEG on a regular basis but made himself available on an as needed basis. I liked him and was impressed he remembered us from five months ago.

Back to the fun stuff. On Friday we enjoyed a nice lunch visit with Jim and Nancy Church, long time friends from North Vancouver, always good for a laugh and intelligent conversation.

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We also had a voice call with my youngest daughter Brittney who lives in Edmonton and I was impressed with Janet’s conversational skills during that call. She was loud and articulate and seemed genuinely pleased to hear from Brittney. On Saturday we realized that only two of the dresses in Janet’s closet fit her and neither is wedding appropriate so Laurel has agreed to shop around for something Janet can wear to her and Raj’s “wedding” here in July. Janet is excited to finally be a part of her daughter’s nuptials.

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Sunday started late after spending the night at KGH then we had to try and get some Resotran for Janet and Jen from Connect was a huge help with that. While we were out there I put Janet through her paces on the bike and standing frame and she did very well at both considering how tired she was. Back at home she really wanted to finish watching Les Miserables after it was interrupted to go to the ER, so we did and Janet was surprisingly tuned in to it. She even caught a line that I missed. Impressive. We both were in tears by the end of course but thoroughly enjoyed it. Monday was a great outside day. We had lunch outside after swimming then went for a really nice walk that evening at Connect. Janet was able to play I Spy much better than the last time we tried and really enjoyed the warm evening. She went to bed very giggly in her new bed that night. Tuesday was Skype day with calls to Mary Gaga, Andrew and a special one to Heather on her birthday. Janet impressed me by explaining to Heather how sorry she was for not getting her a present yet and that she is getting one soon. She did that all on her own and with great conviction. Nice.

The week ahead is setting up to be fun and busy. I’ve switched Janet’s swimming from Friday to Thursday so we can go to Nanaimo for the weekend, then there is the usual Monday swimming followed by a trip to the dentist. I think I’ll have a very tired Janet on my hands by Monday evening. Praying for continued physical healing and cognitive gains and thanking Jesus for all we’ve been blessed with.

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Les Miserables. A night at KGH

I promised to post updates whenever a worthy event occurred but I never said they’d all be positive events.

Last night at around 8:15 after enjoying a nice sushi dinner and half an hour into the movie Les Miserabless, Janet started complaining of pain in her stomach. I immediately thought she had to go to the bathroom as she hadn’t gone since Friday morning. She vehemently refused to go to the bathroom and reluctantly accepted the chance to lay down. With no consistent easing of the pain I decided to take her to KGH in case something serious was going on. We arrived at KGH at 9:45 and began the waiting game.

Janet was called quickly for blood work and an ECG. The ECG surprised me but they wanted to rule out all possibilities and apparently heart pain can be transferred to other parts of the body. Both those tests came back normal and Janet and I waited for the next event, X-rays. After an I V was installed and a pain med given, Toradol, Janet was wheeled to X-ray at 12:20am. As with the last time we went through this I had to help position Janet for two of the pictures to be taken on account of her right arm. One of the techs worked with Janet last time so that made things easier and with me wearing the lead vest we got the shots needed and were out in twenty minutes.

Sleep came easily to Janet after that and she got a good couple hours in before nurse Trevor tried an enema with no results. Janet’s X-rays showed lots of stool build up high in her abdomen again so no surprise the enema didn’t work. Both Trevor and Dr. Paul Cleave were unfamiliar with the Restoran that Janet had been on. He did promise to re order the “urgent” colonoscopy that was ordered May 9th. Hopefully that happens soon. We were offered a bunch of options we’ve already tried without success so we left KGH at 4:15am with a prescription for more Restoran and with Janet rested and reasonably comfortable.

We both got up around 10:30 this morning and Janet has had a good day so far although she’s a little tired. Jen at Connect was able to find a pharmacy that could fill Janet’s prescription today and as soon as we got to Connect Janet had a BM. She reluctantly went for a bike ride and is now in the standing frame before we go home for dinner.

Praying for comfort and resolution to Janet’s toileting challenges.

Record Breaking. Janet sets records daily. #TSJ

It’s been a record breaking week for Janet, setting personal bests in the pool, on the bike and in her sit to stand capabilities as well as her endurance in the standing frame. Health wise she seems very stable with regular BM’s and no obvious side effects from any of her meds. The Restoran ended today, (the magic poo pill) so it will be interesting to see how she does without that. Janet will visit her GP on Monday and part of that visit will be to assess all her meds and see if any further adjustments can be made. Dr. McCann is ordering an increase to Janet’s Baclofen dosage and I’m really interested to see if it has any effect. Janet has been on a very low dose for a long time now with no recognizable effect and if there is no change after the increase I’ll ask that it be discontinued.

A week ago, Jess instituted a program for Janet where she writes the day’s activities on a whiteboard and Janet crosses them off as they are completed. Janet has caught on to this nicely, easily reading what each activity is and drawing a line through it when done. A couple days ago Jess supplied Janet with a digital watch to help her get a sense of the time of day as each activity occurs. Janet was puzzled by the watch, arguing that she has one at home but agreeing it was more a piece of jewelery than a useful piece of equipment. Janet can easily read her Connect watch but needs a lot of work relating to “today” as this morning she woke up thinking it was Christmas. She was still complaining to me when I got in this afternoon that “isn’t it time for grass?” Her code for Christmas.

Janet’s day is centered around her physical activities as the emphasis remains on taking advantage of the Botox. Twice a day she rides the bike in the gym and continues to make steady gains in leg strength as a result. A week ago her personal best was thirty minutes and .83 miles using the arm assist. Today she went for thirty minutes and .62 miles with no arm assist at all! When Janet first started the bike she couldn’t even come close to pedaling without the arm assist. Similar benefits are being seen in the standing frame as Janet can now tolerate close to an hour twice a day. She doesn’t like it much but she tolerates it. As noted the other day Janet is also getting much better with her sit to stand exercises, so much so that she is getting a stripper pole installed in her room. For now it will be used to help her independently get out of bed and into her wheelchair, no dancing yet. As you all know Janet also is excelling in the pool and I expect that to continue improving each time we go.

Our weekend at home was an enjoyable one with Saturday being a day off from physio therapy type stuff. I was reluctant to give Janet the whole day off but that’s the way it turned out and I think it worked out well as she slept in, pulled weeds in the sunshine with me, went for a walk around the neighborhood and made a really good sandwich for herself at lunchtime. We went to church Saturday night for a change and really enjoyed the music and Tim’s message. Janet was fully engaged and we had a good discussion about it all afterwards. Janet continued to be quite talkative well into the night and loved the sushi dinner we had as well as the movie The Guilt Trip. Sunday was a change from the usual as well. Tez was at Connect for a few hours and offered to work with Janet if I took her out there. They had a really good session of sit to stand work teaching Tiffany and Julie how to work with Janet should they need. Everyone learned a lot and Janet performed very well. I wanted Tez to see Janet on the bike to make sure all was well with her positioning etc. It was and liking what he saw he challenged Janet to pedal with no arm assist. She of course did it and is now going thirty minutes that way. After a nap at home while I cut the lawn we made dinner then went for a hot tub. By the time we got outside it was pouring rain but Janet laughed through it and had a good time soaking in the warm water as the rain passed through. She was exhausted after a long and busy day and was asleep before I finished our goodnight prayer. The weekend was capped off with a nice lunch with Kiko and Joel after swimming on Monday before the trek back to Connect.

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Janet seems to be getting more comfortable and confident at Connect but is also more aware that it is not home. Her interactions with the other residents are improving as she gains confidence in herself and gets involved in more things around the house. Instead of an interview this week I decided to have Janet give you a brief tour of her home away from home. Crank up your volume and enjoy.

A Fish Like Janet. Video of Janet swimming today. #TSJ

Many thanks to Joel and Kiko for hanging with us at the KGH Rehab pool today to cheer Janet on in her swimming sessions.

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Here are a few videos expertly shot by Joel so you all can see just how well Janet is swimming on her back. At the end of today’s sessions we tried a little face in the water while lying on her tummy action and she conquered that challenge easily. I was even scared a couple times at how long she was keeping her face in the water. The confidence continues to build.

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Like a Fish. Janet swims for real. #TSJ

I promised I would publish updates whenever a worthy event occurred and so here is the first one. Janet swam for real today, all by herself!

Our KGH Rehab pool sessions have been focusing on balancing and floating with my goal of trying to get Janet to swim. We started today’s first session with her floating on her back to get relaxed and loosened up. I held her from under her right shoulder waiting for a chance to let go when I felt she was relaxed enough. That moment came and she quickly sunk her face into the water then laughed. The giggles were a good sign I thought so I changed position and held her from under both shoulders and got her kicking her legs. Then I let go and off she went! Slowly and struggling a little but managing to keep her face out of the water and propelling herself forward. I had to stop her as she was headed for the parallel bars so we did a reset and with much less struggling she swam about half the length of the pool and was smiling big when she saw how far she’d gone. I let her rest for a bit and took her back down to the end for another attempt and without hesitation she was off like a fish all the way down to the other end in what seemed like effortless fashion. For the first time I believe Janet was truly excited and proud of what she had accomplished as she looked way down to where she’d started and said “that’s pretty far”. It’s farther than she thinks knowing how far she’s come along this past year. Amazing!

The rest of our time in the pool today was spent trying to replicate that first full length swim and she did make it all the way again but not as effortlessly as that first time. During the second session her right leg wasn’t cooperating as well so everything she tried to do was diminished but overall it was a stellar day in the pool and even tonight when I reminded her of how well she’d done she didn’t argue or roll her eyes. Progress!

Talk to you all Wednesday or unless another major event occurs before that. Remember you can follow me on Twitter to learn Janet news almost as it happens. I also hope to have video of Monday’s swimming thanks to Joel and Kiko. Twitter followers will of course see it first.

A Steady Climb. Janet continues to move in the right direction. #TSJ

It feels a little strange to be writing again after almost a week away from blogging. Thanks and welcome to all of you who have joined me on Twitter. That’s where you can now keep up to date with Janet on a daily basis.

This past week has seen Janet steadily moving ahead in a lot of areas, with Friday marking the beginning of the end of her BM challenges I hope. We finally got the medication started that Dr. Agnew said would work, and boy did it! Janet felt relieved afterwards and I still don’t understand how she never felt any pain or discomfort during the long period of time where she wasn’t going. That may be part of why she wasn’t going and hopefully while at her colonoscopy appointment, Dr. Nash will be able to explain what’s happening. As of today all is well in that department.

When I first met Janet she was challenging herself to become more assertive. As the years went by she learned to make sure her voice was heard very well. I’m starting to see a return of that strong personality now as she voices her opinion on things and has taken a few verbal shots at me. The funniest one being last night while watching basketball. I had been nagging Janet all afternoon about drinking water but hadn’t said anything for a while. Since it was nearing bedtime I casually suggested she needed to drink more water. She very quickly and sharply (smiling though) said “why don’t you drink more water”. Bob and I both laughed out loud along with Janet who promptly had a few big sips of water. I like what I’m seeing from her this way and although she still lacks confidence in her physical abilities she is clearly gaining a better understanding of her situation and the moment she is living in.

Speaking of physical abilities, Janet continues to impress not only me but her therapists as well. I’m praying she soon recognizes herself how well she is doing. Friday’s sessions at the KGH pool were strong with Janet doing some good balancing and “walking”. In our pool on Monday Janet “swam” on her back for ten seconds on two separate occasions. I’m calling it swimming because she continued kicking her legs and moving her left arm to keep her face out of the water. There was some propulsion but hard to measure in such a short period of time and I was so excited I kept thinking how I could get video of it all. No luck with that yet. Janet was pleased I was excited but doubtful she had done anything that exciting. The hot tub continues to work its magic on Janet’s stretchability and she looks forward to those relaxing sessions now. If we could get her that interested in the Connect gym we’d be set. Janet is performing well there but still argues against going each time. The staff and I keep emphasizing the benefits she is seeing from all her hard work and I think we’re gaining ground there. Should be easy to do as Janet is getting measurably better on the bike, the standing frame and the parallel bars almost daily. On Monday she set a personal best riding the bike for thirty minutes and traveling .82 miles. Janet is tolerating the standing frame for forty minutes to an hour now and it’s so weird having her standing tall I can’t sit beside her when she’s in the frame as I’m not used to looking up at her.

Meal prep and household type chores are something Janet strangely enjoys. She eagerly puts her laundry away and helps me make her bed. I still have to prompt her to look at the labels on her drawers to see where something goes and she needs a lot of guidance with kitchen duties but her willingness to try is cool and she really does concentrate fully when given a task.

Janet and I went for a nice long walk Monday evening to explore the neighborhood. We saw a nice development with some single level homes for sale but decided we don’t want to live in Lake Country. I tested Janet’s vision while we were out by asking her to read signs and find certain objects. She can see things for sure, her challenge is in sorting out what she’s looking at and zeroing in on the key thing. It was a fun walk and Janet seemed to enjoy the challenge of finding things to look at, kind of like eye spy.

The following is the first in what could be a weekly feature of the blog. This interview was shot this afternoon and its purpose is to allow you all to see and hear Janet for yourselves instead of just reading my words. We hope you enjoy.

Praying for continued improvement and acceptance by Janet in how well she’s doing.

Good Move. Toilet success and more. #TSJ

My day with Janet began early, twice. I woke up around 1:30am freaking out that she wasn’t beside me in bed. I spent at least five minutes searching the main floor of the house and yelling for her before I realized she was sleeping soundly at Connect. Must’ve been the nachos.

The day started for real with a Team Meeting at Connect at the more civilized hour of 9am. It was a good discussion, mostly about the positive gains Janet is making in all areas. The only real concern is her bowel movements but there is a plan in place. In brief, Tez is working towards independent transfers with Janet and is reluctant to try and predict whether or not she’ll walk one day. I believe she will. Mary Lou is seeing improvement weekly in Janet’s verbal skills and her vision and says Janet is getting pretty good with the iPad. I mentioned I tried having Janet go briefless at home without success and the team is supportive of trying to wean Janet off of the briefs during her awake hours. We are still waiting for the chance to meet with the neurologist Dr. Adams and the neuropsycologist Dr. Miller. Soon hopefully.

Jess got Janet into the standing frame after the meeting and about twenty minutes in Janet announced she had to go to the bathroom and boy did she. Finally a bowel movement and credit to the increase in physical activity for her and maybe the Peg-Lyte. Janet felt a lot better after that and went to the gym for a little bike ride and a good stretch. We went for a walk to the hot dog stand across the street for lunch but the guy wasn’t around so back to Connect we went and Janet BBQ’d us a couple of smokies. She was pretty tired after lunch and had a good long nap with no resistance at all. I think the last few days finally caught up to her. Unfortunately she slept through a chance to work with Tez at the parallel bars but he agreed to come in tomorrow morning and work with Janet before swimming. While we sat outside for happy hour I noticed how loose her right arm was and decided to see how much I could move it around. As you can see I was able to get in a position it hasn’t been in for a long time. Impressive.

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As I was getting Janet up from her nap I mentioned I wanted to tell her what happened to me last night but would wait till she was totally up. Fifteen minutes later she asked “what about the story you were going to tell me?” This was one of many super bright moments Janet had today as she continues to gain cognitively. After dinner we had quite a serious discussion about “my problem”, with Janet asking lots of questions about herself and Connect. There were tears of course as I didn’t sugar coat anything. She asked, I answered and I think this is great progress. That level of brightness was only with her for about an hour or so and as she tired towards the end of the night her speech got a little garbled again. She did manage to lounge for a good while and watched some basketball before lights out in readiness for a busy day tomorrow.

This post is the last daily update I plan on writing as I find too many days are pretty routine and don’t require the effort it takes to produce an update. I will publish at least every Wednesday evening from now on and as events warrant. Those of you who wish to stay totally plugged in can follow me on Twitter @larrylatour where I will post daily with photos and or video.

Praying for a restful night that provides lots of energy for tomorrow.