swimming

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.

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.

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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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.

Another hole in the head. Janet goes to the dentist. #TSJ

I let Janet sleep in today knowing she wouldn’t likely have time for a nap this afternoon. She was quite happy to snooze a little longer in the sun from when she woke up just after eight. Breakfast was nice and relaxed but we somehow ended up being a little rushed to get to KGH for swimming. The pool sessions were good today with Janet having more control of her right leg than on Thursday. That allowed her to do some decent “walking”, making it about one and a half lengths of the pool with assistance. Her floating wasn’t quite as good today but she allowed me to get her face underwater briefly a couple times and she didn’t panic at all. The confidence is growing. I noticed a big difference in her flexibility compared to the hot tub even though there’s only two degrees difference in temperature. Janet felt pretty good about her pool sessions today but says she liked the hot tub better because it’s warmer.

Before we left the house this morning we made sandwiches for lunch as we only had a half hour between swimming and the dentist. We sat in the car near the beach and enjoyed those then made our way to Creekside Dental. Janet was a little apprehensive about this appointment and was starting to fade a little but Collette, Tannis and Colin treated her like royalty and she stayed awake and cooperated very well the whole hour she was in the chair. The cavities she had before getting sick are still there unfortunately so she has to go back a couple more times over the next month or so to have those filled in. Colin assured me he didn’t see anything going on in Janet’s mouth that would indicate side effects from Dilantin and I was happy to hear that. With her new toothbrush and floss in hand we drove off to Connect.

By the time we arrived at Connect it was happy hour so we sat out in the sun while Janet ate an apple and drank some water. I think I was pretty good about not nagging her to drink today and pointed out the benefit of having the fluoride treatment at the dentist where you aren’t allowed to drink for half an hour afterwards. She was please I couldn’t nag her then. Janet ate her apple quickly giving us time to walk down the street to a little beach on Wood Lake. That walk and beach are not nearly as nice as around KGH but it’s what we have this summer and I am glad we have something. All those trips to the beach last summer were nice but I was never sure how much Janet was getting out of them. Today her face lit right up when we got to the beach and she constantly was looking around at all there was to see. She even followed and smiled at a couple of noisy Canada geese that flew by maybe twenty meters away from us. We watched a couple of boats that were playing on the lake and she agreed it looked like fun. Time to see if I can get her in and out of one so we can give it a try!

With dinner done the next event was the usual argument about going to the gym. Janet capitulated eventually on the condition that I go too. Bob joined us and worked Janet’s legs while I did her right shoulder and arm. We both noticed nice improvements and Janet didn’t mind the workout at all. She wanted me to read some Slow Dance with her before bed and we had a good discussion about what we’d read afterwards with Janet remembering one of the topics we had read about. Considering the lack of a nap and the busyness of the day Janet did very well to stay up until nine but was happy to say goodnight. Praying for lots of rest and healing and a good day with a more regular routine tomorrow.

Keeping Score. Late night for Janet. #TSJ

Janet was surprised to see me this morning as she had forgotten about swimming. Jess reported that they tried to go to the gym but it was busy so the only activity Janet got this morning was Speech with Mary Lou. Apparently that went well with Janet talking nice and loud and clear as she practiced asking questions instead of answering them like she mostly does.

Our drive to KGH was chattier than usual but in the pool Janet seemed a little tired and had zero command over her right leg. I wish I knew why this happens and how to prevent or correct it as it was tough for Janet to do her standing and walking exercises in our first session. The second half hour was better though and I was able to let go of her as she floated on her back for a couple of seconds. Same thing with standing on her own. It took a long time to get there but she was able to stand for a good five seconds a couple of times. Walking continued to be a challenge as her right leg was largely unresponsive.

While walking back to the car we were stopped by Monica, the transition nurse from 4B. She was very excited to see Janet and amazed by her progress as she had not seen Janet for probably seven months now. Janet had no clue who she was but enjoyed the compliments. Monica mentioned to me how she and her husband had gotten their Power of Attorney done and updated their wills after watching what Janet and I have gone through without a POA in place. She even told the story to a colleague the other day and they are going to get theirs done now too. If any of you married folks reading this don’t have an Enduring Power of Attorney in place and up to date wills, get on it. You never know what’s going to happen and things can get really messy without that paperwork.

We deviated from our intended lunch destination choosing to support a local business that I spotted along the way, Deli City Cafe. Good thing too as while we were ordering we saw our friend Roger who was just finishing his lunch there. It was nice to see his big smile and to know things are going well for Carrie and he. I wanted to get Janet back to Connect in case we could see the wheelchair guy so we ate our lunch once we got back there but no wheelchair guy. That did allow for a late nap for a tired Janet and I got her laying down a little before four. What was planned as a quick siesta turned into a two hour nap as we both fell asleep until six o’clock. Not sure what that was all about for me but I must’ve needed it.

Bob took Janet to the gym after dinner and she actually went without arguing. Bob mentioned Janet’s lack of command of the right leg but said all else was good. Janet seemed pleased and was ready to watch some playoff basketball. It was a good thing she had that nap as the game was really good and she was actually able to stay up to watch it all as it ended around 10:15. For the first time Janet was able to repeatedly tell me the score of the game and she is starting to understand some of the rules again too. I had her lounging in her wheelchair the whole game and was able to get both legs quite straight and she was comfortable the whole time. I noticed when I put her to bed that her right leg was toasty warm just like her left one, often it is quite cold, even icy sometimes. She was able to move it on command quite well to put her PJ’s on too. Maybe the lounging helped?

As I said goodnight I reminded Janet that Laurel will pick her up around lunch time tomorrow and bring her home to see Heather and me. She said, “I hope I remember”. I’m sure she will. Praying for rest and healing and lots of energy for tomorrow and the weekend.

Keeping Up With the Jones’s. Good day in the pool. #TSJ

Janet slept so well last night I had to wake her up this morning so we could enjoy breakfast and not be rushed to get to the pool. She seemed bright and energetic and was ready for action once in the water. My goal for her today was to get more confident in the water and to gain more spacial awareness. After warming and loosening up I tried to get her floating on her own and she almost made it and I think that if she can gain control of her right leg she’d be there. That right leg was her biggest impediment today by far as it was doing it’s own thing most of the time. Quite the mystery to me as every day is different and every hour can be different. Last night she couldn’t move her right leg to save her life, while getting dressed this morning she moved it almost as well as her left leg. Janet is as aware of not being able to get that leg to do what she wants it to do as she is her right arm and for the most part handles that awareness very well. Hopefully she keeps trying to get them both to work. The session continued with some walking and standing exercises with Janet trying very hard to accomplish both. During our second half hour I focused on the walking and standing and Janet stood on her own for about three seconds a couple of times. Again, that right leg prevented her from doing better but she quickly learned how to save herself from falling to the right and even got herself to fall towards me a few times and she doesn’t seem as afraid of getting her face in the water as previous. I’m hopeful I can get her standing on her own soon.

We made our usual exit through the Rehab Unit and had a nice chat with Nicole, a Speech Therapist that worked with Janet while she was in rehab. Nicole was so surprised to hear Janet speaking so clearly. That visit was a nice confidence booster for Janet even though she didn’t really remember Nicole. I noticed Dr. Jones at the nurses station and went in to tell him someone wanted to see him. He immediately put a huge smile on his face and headed out to see Janet who flashed him the biggest smile of recognition I’ve seen her give anybody. She remembered Dr. Jones and he was totally thrilled to see her. Had I known the reunion was going to be that dramatic I would have had the camera rolling. Dr. Jones is very impressed by the progress Janet has made and said she’s come farther faster than he thought she would. Amen.

Seems everywhere we go these days someone knows Janet and as expected at the passport office we saw Todd, a super guy that has done a lot of landscaping work for us. Janet wasn’t sure who I was talking about going in but recognized him as soon as she saw him. Janet still says no when I ask her if she wants to say hi to someone but when she actual does it she is very happy so I’m not going to ask anymore.

There was time for a short nap before dinner at Connect then time for a quick stretch before a Skype chat with Andrew. The stretching seemed to give Janet a little energy boost and enable her to have a decent conversation with Andrew. She was pretty much ready for bed then but asked if I would read a little Slow Dance to her first. Once again lots of similarities to Janet’s experience and she is more accepting of them now too. Her bedtime routine went really well, no significant confusion, and she was happy to wrap up in the blankets and call it a day. Praying for lots of rest and healing tonight so that Janet is prepared for an active day tomorrow.

Almost. Janet just about makes it without a nap. #TSJ

Garrett and Lorne had Janet in the gym when I arrived at Connect this morning. Garrett was stretching her legs and asking her the name that family member questions. Janet was mostly laughing and calling everyone Allison. Apparently she had done well earlier with those questions and had a really good workout. She was pretty tired as we headed off to the pool at KGH and I was a little concerned as to how much energy she’d have for swimming. Once in the water she was fine. Each time we go is very different and today Janet really excelled at floating on her back. There were a couple of moments where I was balancing her right side with just one finger and letting go briefly and she would float. Trouble is as soon as she realized I wasn’t holding her she’d panic a little and sink. She was much more aware of her body in the water today and took some strong steps when we tried walking. Janet didn’t have the stamina to go the full length of the pool today but managed more than half a couple times. Her right leg was swinging pretty freely today and she didn’t seem as able to control it as last time. During our second half hour, where we had the pool to ourselves, I put a weight on her right ankle and that seemed to help a little when walking but made no difference in any of the standing exercises. For the most part I focused on trying to let Janet get more comfortable in the water and figure out for herself what she needs to do to stay afloat. I think we made some progress.

On our way out of Rehab we had a nice chat with Cathryn, Janet’s former ABI Coordinator. I also got a quick question in with Dr. McCann who happened by. I asked if the reappearance of the occasional incident of clonus in Janet’s right leg was a good sign or a bad one. He said it’s not likely anything to worry about but keep and eye on it. So far it is occasional and Janet laughs when it happens and says it doesn’t hurt.

We got home for lunch and Janet helped make herself a wrap then asked to look at pictures of “our” trip to California in 2001. We had talked about Disneyland the other day and she remembered me telling her she’d been there with me, my parents and my kids before we got married. She couldn’t remember the trip at all but remembered to ask to see the pictures. High five! There are no digital photos that I could find of the trip but we do have a DVD that has a few shots of Cam and a glimpse of Janet’s head and Laurel as well. I’ll have to dig around to find some prints to show her as she didn’t remember anything from the video as it’s ninety nine percent my kids. Little did I know then.

Janet was pretty tired as we drove to the doctor’s office as there wasn’t enough time for a nap today. We had a good chat with her doctor who promised to find out what the deal is with getting in to see the neurologist. Janet’s Dilantin levels are a little higher than last time but nicely in the therapeutic range and I believe these numbers are more accurate than previous as Janet is taking the capsules now instead of the liquid, a much more accurate dose. I told the doctor that it’s still a battle getting Janet to drink water and she advised not to make it a big issue. As long as Janet is peeing frequently and the volume seems fine leave it at that. There are more important things to get Janet doing. Good advice.

Dinner was ready when we got to Connect and Janet was hanging in there pretty well after a few minutes of shut eye in the car. We went to Music Night after dinner to listen to Brian and Kevin play guitar and sing. Janet really enjoyed singing along to some of the songs and said “it was more fun than I thought it would be”. There’s a video on Keek. @larrylatour . She asked to read for a little before bed then did a really good job with her nighttime routine. I thought we’d go out on our usual happy note but Janet got all upset about not having had a BM for a while and getting some help with that in the morning. No matter what I said she just got super upset and she was really over tired by this time. I ended up laying in bed with her for a good half an hour before she calmed down and went to sleep. Some of the things she said during this meltdown were old Janet things for sure and I haven’t seen them since this started. Not sure if it’s good or bad but gives me another reason to chat with the neuro psych team soon.

Praying for a peaceful sleep tonight and a bright day tomorrow.

Chiming In. Janet talks a good story. #TSJ

Janet had been to the gym and was pretty much ready to go to the pool as I arrived at Connect this morning. I asked her what we were about to do and she couldn’t come up with the answer on her own but Jess said she got it during her morning routine. As we drove to KGH I sensed Janet’s energy level being a little low but she said she was fine.

The pool session went well with some good kicking and good standing. The “walking” was not as good this time and I really think one reason it was so good on Monday was Janet was in the water for an hour so was nice and warm and loose. Pool man Jim is away on vacation so I asked his relief, Jess (yes another one) if there were any people doing one hour sessions and could Janet join them. Turns out there is one person going for an hour at noon on Monday’s with the second half being just him in the water. Janet will join in starting Monday and we’ll go back to back sessions on Thursdays at noon as well. I’m excited about this as I think the pool is helping Janet a lot. I just hope pool lady Jess is on the ball and we can actually do this.

The City finally opened up the parking at Strathcona Beach to the public after holding it exclusively for Interior Health employees all winter. We parked there today so we could walk from swimming to singing. Stephani had Janet doing some cool things today including playing a hand chime which I thought had an amazing tone. Very pure and fun to make. Janet seemed to really enjoy that and I saw the concentration on her face as she tried chiming in on beat. You can see a little video of her playing by following me on Keek or Twitter, @larrylatour. She also played a shaker for one song. Her singing wasn’t the loudest ever but you could tell she was enjoying it all. Because of the change in the swimming schedule we’ll have to find another time for Stephani to do her thing but will try and fit it in somewhere as I think there is some benefit for Janet with more to come over time.

We decided to go home for a quick lunch which never turns out to be that quick. You’d think soup and a hot dog would be fast to make and eat and I guess a little over an hour from start to finish isn’t bad but it was 3:30 by the time Janet was done. That meant no nap as I wanted her back at Connect for a stretch before dinner. When she caught on to that idea she protested loudly and vigorously to the point of crying and being quite negative about it all. She thought she was spinning a good story in her favour but all she came up with was “I don’t like any of it”. I put the outburst down to her being tired and she slept a little as we drove back to Connect. To help her settle in I had her put away her laundry and help make the bed then Curtis came in with her dinner time meds. We had a good chat and Janet seemed to start to catch her second wind. Garrett joined us for a few minutes and got Janet laughing. When they left I asked her if she wanted to do dinner then gym or gym then dinner. She said dinner first so off we went. Janet made a sharp left out of her room and I reminded her the kitchen is right. She asked why I mentioned the kitchen so I told her she said she wanted to do dinner first. She sternly told me “no, I’m going to the gym now” and off she wheeled. I went down and told Curtis and he caught up to her and put her through a good workout.

Janet returned all smiley and bright and hungry, finishing off dinner with an orange in the living room with Chris and me followed by some jelly beans that were happily shared around. I was very impressed with how long Janet lasted today without a nap or her noontime dose of Ritalin. Today was the first day without that and she tolerated it with no problems that I saw but one day, especially today, is not a fair test. I’m not going to promote the lack of a nap either but it’s nice to know she can push through if needed. Bedtime came at a more reasonable 8:45 with no complaints from Janet at all.

Praying for a good night of rest with lots of energy for tomorrow and a continued building of Janet’s strength.

Walkies. Good day in the pool. #TSJ

No sleeping in today as we were up to get ready for swimming at KGH. We arrived in plenty of time and Janet was excited to get into the water. I think mostly because it’s so warm but she does enjoy floating around and trying to swim. I put her through the usual routine waiting for Tez to show up and coach us from his perspective. He thought we were in for an hour and turned up just as we were getting out. Thankfully he knows pool man Jim and asked if Janet could go in with the next group and it was an easy yes. Back in the water I showed Tez what I normally have Janet do and since she was all warmed up she performed rather well. Tez was happy with her kicking abilities (as a starting point) and was also impressed with her standing exercises. One new approach he showed us was to use a block so Janet’s right foot is on it with her left foot on the pool floor. This forces her to use her right leg to stand up. I felt the difference immediately. On a whim Tez asked how Janet’s walking in the water was. I hadn’t even thought to try before so took her over to the parallel bars to see what she could do. Janet actually was able to take a step but she seemed really awkward using the bars so I brought her out into the middle of the pool, stood in front of her and held her left hand and boom, she took multiple “steps”. It was very exciting and she had a huge smile on her face. I could still see doubt in her eyes but also some determination and focus. She was really thinking the moves through and managed to “walk” half the length of the pool. Huge high five! These are not her first “steps” as she did “walk” with Moira using the ceiling lift in Rehab but this is the most she’s “walked” on her own. All I did was balance her.

The back to back sessions in the pool were great and I kind of wish we had an hour each time as the thirty minutes just go by too fast. Janet worked up a good appetite for lunch at home and also was very tired afterwards and had a good long nap this afternoon. We got back to Connect in time for dinner which Janet ate heartily as well then went to the gym with Bob for some leg stretching. Bob said she did well especially with the exercises she’s to do on her own. Janet asked to watch TV when she got back and we caught the last forty five minutes of Willy Wonka which Janet enjoyed but she laughed out loud a number of times during the movie Big which came on after that. I didn’t let her stay up too late but it was ten o’clock by the time I turned her lights out and she wasn’t all that tired.

As impressed as I am with Janet in the pool I am a little concerned about her lack of power in standing to transfer from her wheelchair to the toilet or couch. She seems to have forgotten how to do it. Sometimes she can get some decent lift from her legs and other times there’s nothing there at all. She is getting upset by it now too so I’ll ask Dr. McCann about it tomorrow in hopes he has an answer. All in all it was an exciting day with Janet and she was feeling pretty happy as we said goodnight. Praying for lots of rest tonight and a productive day tomorrow.