Janet, A Success Story. March 21. #TSJ

Janet got off to an early and fast start today instead of sleeping in on her first day home. She woke up at 7:30 having to go to the bathroom. I’m noticing a bit of a trend in that direction lately as she seems more aware of the need to go. After a successful visit to the bathroom it was off to make breakfast. Janet managed on her own very nicely and we spent a sunny morning sending emails, text messages and phoning people. It was fun and its a good thing we were up early as we never would have gotten anything else done otherwise.

With some time before lunch we decided to go visit John at KGH with the intention of taking him outside for some fresh air. It was OK with his nurses and John but by the time he was ready it was lunch time for him and two other visitors had arrived and we could tell John was getting a little overwhelmed so we said goodbye with a promise of trying again soon.

Lunch was not the usual grilled cheese today as Janet accepted my suggestion of a turkey breast wrap. She helped build them and said grilled cheese was still her favourite but those were a nice change. We did a little setting up for our wine club meeting tonight before reading some The Artisan Soul at nap time.

You would think a two hour nap would set Janet up well for the rest of the day but she never seemed totally herself tonight. She was a little grumpy at dinner despite doing a good job helping to make it. As our guests arrived she perked up and was fine for most of the evening and said she had fun but seemed a little off to me. I thought she would quickly crash right afterwards but she wanted to clean up a little then have me read more before falling asleep.
Wine Club
There was not a lot of walking today for Janet but she was busy in many ways, interacting with lots of different people and I’m grateful we have so many friends willing to spend time with us. Praying for a big night of sleep and a fun weekend with Laurel who is now scheduled to fly in tomorrow morning.

Janet, A Success Story. March 18. #TSJ

Today marked another visit with Dr. Miller at KGH and I met Janet and Jess there this morning. As usual, it was a very positive meeting with lots of affirming words sent Janet’s way from someone whom she will accept those words from more than she will from others. In summary, Janet continues to make notable progress cognitively and surprises Dr. Miller each time he sees her. He assured me that he will remain in the picture even after Janet comes home and that is good to know.

We took advantage of being at the hospital to pay John a visit and this time he was awake! He had just returned from his first shower in six weeks and was feeling very good about that. Janet shared some stories and teased him a little and if the weather holds we will try and take John outside on our next visit. He hasn’t done that since arriving at KGH.

More visiting took place on the way home for lunch and Janet was pretty tired after that busy morning so didn’t argue at all about a nap. In fact because she was home she actually smiled about it.

Knowing she had to do some exercise back at Connect Janet chose to ride the bike and agreed to do the Standing Frame after that. Her ride was excellent, almost setting a new distance record and for the first time rode without strapping her feet to the pedals. I’m hoping she is soon strong enough to use a simpler pedal which may mean we could get a bike for home. When we looked for a bike before, Janet needed a snowboard type binding to hold her foot on the pedal. That need may be disappearing.

The Standing Frame was made much more tolerable tonight as Chelsea put on The Sound of Music for Janet. As the first song started Janet jumped right in in full voice and drove Wes back to his room to hide from the “girly movie”. Here’s a little of what the last hour and a half of the evening sounded like. Janet will watch the second half tomorrow but I’ll spare you the video.

There was a little time left for reading before lights out and The Artisan Soul was very interesting tonight. I wished we had read it earlier in the evening as Janet had a lot to say about it but was too tired to really get into a conversation. Praying for a positive attitude and lots of energy for Wednesday.

The Team Save Janet Report is Out! #TSJ #HomewardBound

Another day, another milestone. We had Janet’s team meeting this morning at Connect and in amongst the usual progress reports we discussed the transition home. That’s right, home. Sometime before the 24th of December Janet will be living at home full time! Exciting and scary. Exciting in so many ways, scary in that we have no idea what being at home full time looks like at this point. Janet continues to make progress and will likely do so over the next nine months or more and that makes it hard to plan for the amount and type of care she will need at home. The good part is there is a nine month window with which to work out all the details. For now, the focus is still on getting more activation from Janet’s right leg with an eye towards walking with/without a cane by June. The other goals set out in the meeting were to improve Janet’s reading and hand writing, improve her knowledge of the medications she takes and to gain independence in taking them. Janet was a full participant in today’s meeting and asserted herself well. High five!

To further demonstrate her progress Janet stood at the kitchen counter after the meeting and made herself a grilled cheese sandwich. She had minimal help from Jess in the process and even managed to turn herself around so she could grill the sandwich once she had built it.
As soon as lunch was done we took off to KGH to visit John. He seemed tired and not quite his positive self today but was happy to see us. Please keep him in your prayers. As is common with hospital visits Janet was in celebrity mode. First up was Jane her Occupational Therapist from 4B. Janet didn’t remember her but was excited to tell Jane how well she is doing. Jane made a very clear point to Janet how thrilled she was to see her and how far she has progressed also saying it’s important and exciting for those that work with patients like Janet to see the progress after such a long time. All good for Janet to hear. Up on 4 East we saw Emma, Janet’s first nurse in Rehab. Same sort of feedback and encouragement from her and again, Janet was proudly reporting on her progress. Love it.

That was a very busy first part of the day and Janet was out like a light as soon as we got home. I had to wake her once I had dinner ready just in time to eat and get to SheLife. It took her a while to get her energy back and I was a little concerned with how she’d manage the session. Heidi excitedly informed that Janet prayed out loud tonight for the first time and everyone at her table could hear her too. Janet said it went well but she isn’t understanding any of what the video segments are supposed to be teaching. That’s OK because the social aspect is far more important for her anyways, proven by how her ability to participate has increased. Janet agreed and added “they all really like me being there” in an almost Sally Field at the Oscars kind of way. Cute.

This marks the end of The Team Save Janet Report as we aren’t in “save” mode any longer. The “team” still exists I guess but really only figuratively. Tomorrow, I hope to have re named this blog site to something that reflects Janet’s determination, hard work, perseverance and inspirational qualities as we work our way towards coming home. If you have any suggestions, I’m all ears, or eyes.

Praying for a solid night of sleep and a productive Thursday and thanking Jesus for His many blessings.

The Team Save Janet Report is Out! #TSJ #MissIndependent

Interior Health is in the midst of a project aimed at identifying what information a stroke patient and or their family needs and when would be best to provide that information. Today the lady in charge of Acquired Brain Injury for the Okanagan and a fourth year Social Worker student were at Connect to get feedback from those willing to share. Janet and I attended and I was very impressed with how involved Janet got in the discussion. The line of questioning, I thought was rather ridiculous as they asked about day one through seven of a stroke incident. Not one of the patients in the room remembers day one through seven and Janet doesn’t remember month one through month seven so what the heck. Janet very clearly explained that to them and also commented on what she feels she needs now and heading into the future. She surprised me by saying she has flashes of memory from something in a hospital but doesn’t know what it is. This is the biggest example of her taking ownership of her situation that I’ve seen. High five!

Garrett took Janet to the gym right after the meeting and did some stretching then I assisted with some Shuttle work. Janet is certainly at a higher energy level in the morning than she is at night and even said so herself. After a light lunch we took off to KGH to visit John. Unfortunately for us he was sound asleep when we got there but we had a nice visit with Chantelle, one of Janet’s former PT’s who’s now working the ward that John is on. I took Janet over to 4B where she spent such a long time and gave her a good look at her old room to see if there was any memory there at all. Her answer was no and she didn’t remember Jacque, the head nurse either but we had a nice visit with her anyways.

Janet had the privilege of spending a little time at home today which consisted of a short nap followed by a home made dinner then it was off to SheLife. Janet was very prepared for tonight’s session as Heidi had wisely emailed a couple of questions for everyone to try and answer. I was able to help Janet with them and then have her try and remember her answers a couple times each day leading up to tonight. Heidi says Janet shared a lot tonight and Janet seemed pleased with herself afterward. Tonight was also different in that I didn’t stay and help with the Tech Team. It was our Strata’s AGM and I felt it was important to be there so I left Janet at Trinity and went to the meeting. It felt a little weird but I knew she was in good hands and I think she liked the increased sense of independence. She’s also very much accepted the idea of having her own phone and is quite excited to receive calls. If you wish to have Janet’s number please email her your request and I’ll have her send it to you. Be patient when you call, you won’t always get an answer and it may be good to call back a minute or so after your first attempt. The best times to call most days are between 9am and 10am, noon and 2pm and 6 and 9pm.

Praying for a solid night of rest and an energetic Thursday.

The Team Save Janet Report is Out! #TSJ #CarShopping

We are moving right along with our move and I almost brought Janet home this afternoon so I could keep packing but we also need to figure out the car situation and decided to use our time for that.

Jess brought Janet in to KGH early this afternoon where I met them and took Janet to her appointment with Julie the splint lady. For the past few weeks Janet has complained of a little pain in her hand when wearing the splint for long periods of time and we’ve noticed her arm tightening up a little over that same period and even more so now that the weather has cooled. Julie was very impressed with the state of Janet’s hand and wrist and offered two solutions towards making the splint more comfortable. One would be to adjust the splint to allow for a more bent hand position, the other a different strap that would place more pressure on Janet’s fingers giving her hand a more relaxed position. Julie agreed that an adjustment to the splint would be a step back so we did the strap option. Once installed, Janet’s hand and wrist were in good positions and she said it felt fine. By seven o’clock tonight she said it was starting to bother her so maybe we just need to pace this thing out a little better. Julie encouraged continuing to stretch Janet’s wrist and fingers as much as possible to enhance the work of the splint. Too bad we no longer have a hot tub as that’s where I got the best stretches for her.

Our visits to KGH often result in seeing someone that cared for Janet at some point and today we saw Chantelle and Kathy. Both worked as Physio Assistants back in the 4B days and Chantelle is the one who coached Janet during her first days propelling a wheelchair. They had lots of encouraging words for Janet and I and it was a blessing to run into them today. Hearing the things I tell Janet from other people gives those comments way more weight and Janet seems to get a kick out of people she has no memory of knowing so much about her. She’s finally starting to believe that there are/were lots of good people caring for her.

Janet agreed to do more car shopping with me on the way back to Connect. She’s getting tired of all this as am I but understands the reasoning behind doing this now. We cruised a Nissan lot but saw nothing close to what we need then returned to the Subaru lot we visited right at the beginning of our search. I remembered that visit begin rushed and me being disappointed that Janet couldn’t get into the car I thought was going to be a good one for us. This time I was hoping they had an older model on site as they were lower to the ground and I was very confident Janet could get in. I was right but the only car of that style they had was a 2002 and I don’t want to go that old. While we were there and had time we decided to try the newer model again just for kicks. Janet got into it easier than anything else we’ve tried that wasn’t a pure car and I don’t know how we misjudged it so poorly the first time. The car we tried was taken in on a trade just thirty minutes before we got there and was by far the most fun car I’ve driven during our hunt. We may have a deal tomorrow!

A very patient and tired Janet was happy we finally found something worthy and upon our return to Connect was hungry for dinner. It took a lot of convincing but I actually got her to go for a session on the Shuttle tonight and was happy with her performance. Despite the persistent neglect of her right leg it is getting stronger, at least for being able to push on the Shuttle. Sensing her tiredness and wanting her to be happy I gave her the night off from the Standing Frame and we enjoyed hanging out the Humberto, Wes and Kieran in the living room for an hour or so. Janet told me she liked hearing the “banter between all these people”. She will answer questions from people well but still won’t initiate a conversation but she is picking up on more of what people are talking about and keeping it in the right context.

The busy day caught up to Janet in a hurry and she asked to go to bed at 8:30. She did want me to read to her for a little while and responded well to some questions on what we read. Today was a fun and productive day with Janet. Praying for healing of her right hand and arm and for lots of energy for a fun day tomorrow.

The Team Save Janet Report is Out! #TSJ #fish #swimming

Today was getaway day for Cam and Gina so Janet started her get up routine a little sooner than she would’ve liked. Once up she was bright but reserved, anticipating the goodbyes about to happen. With promptness not being a Cam specialty Janet had plenty of time to finish breakfast before the tears started to flow. It was fun having Cam here and a real pleasure meeting Gina, we look forward to seeing them again soon.

It was back to the pool at KGH today after missing last week due to the stat holiday and Janet excelled in the first session. Her swimming was great with good turns in each direction and really fast at times. The emphasis today was on trying to get some action out of that right leg. We tried walking which was good from a balance perspective and although she was moving her right foot forward each step, the walk was still mostly a hop. Janet did lots of exercises that required her to move her right leg and the more she did them the more success she had. The second session was completely different as a result of Janet being the shortest one in the pool by far so the water was too deep to do walking or balancing so we focused on swimming. For the first time Janet executed a roll to her tummy followed by a roll onto her back all in one length of the pool. She actually seemed pleased with herself for once on that one. High five.

Lunch was in the sun on our patio followed by a short nap before Chelsea worked her magic with Janet’s hair. It’s amazing how fast Janet’s hair grows and now that its all the same length I think she’s cuter than ever. br />

Just because she’s cute doesn’t excuse her from kitchen duty and Janet did a great job chopping onions and potatoes and setting the outside table for us as summer has returned thankfully. Janet had a brief Skype chat with Laurel then rode contentedly out to Connect. There was no arguing about doing the Shuttle but there was a lot if arguing about the amount of tension to be used. Janet ended up doing a decent workout followed by lots of good standing on her own which earned her a night off from the Standing Frame, that and the fact it was getting late.

So ends a good day and a good weekend for Janet. I continue to see cognitive improvements and am really praying for large scale physical improvements.


Full House. A special week of family fun for Janet. #TSJ

Janet could not have been more excited this past week leading up to Laurel and Raj’s Christian wedding ceremony on Saturday. That excitement enabled Janet to accomplish a lot as she was almost forced to be on a high level of alert all day everyday. She sometimes found it hard to let go and calm down at night with Thursday being especially difficult as she hardly slept at all. To be able to not only witness but also contribute to the wedding was huge for Janet and it was very exciting for me to watch her take it all in.

Thursday started with a phone call from Janet just after noon wondering when I was going to be at Connect to pick her up. I reminded her I said I’d be there at two but she said that was too late. I managed to get there by 1:30 just as she and Jess were finishing making her bed. It had been a busy morning with good reports from the gym and an outstanding report from Mary Lou regarding Janet’s speech. Jess said she was out on the patio while Mary Lou and Janet were working in the Den, a good twenty meters away, and she could hear Janet from there. Impressive. After running an errand downtown, Andrew, Laurel, Heather and my mom joined us for a trip to The Flower Farm for a few decorative features for the wedding. We all were a little dissapointed with the selection and service but were very surprised and impressed by the lemon trees.

Who knew? My mom was determined to serve us all a turkey dinner so despite the thirty plus degree temperature outside, that’s what we enjoyed. Thanks mom!

So ended a very bright day for Janet, or so I thought. Her mind must have been working overtime as she was very restless all Thursday night, waking frequently to tell me she couldn’t sleep or was uncomfortable. It all peaked at 3am when she insisted on going for a walk. Noting that she wasn’t kidding and was half way out of bed I decided to go along with her crazy idea and got out of bed to assist. Once up, she very confidently took a good step with her left leg then followed nicely moving her right leg forward. That was not a step, more like a drag, but it was impressive none the less and she repeated it three or four times down the side of the bed. I held probably ninety percent of her weight but all the movement was her. When she’d had enough we got back to where she started from and she managed a little bit of sleep for what remained of the night. After regaling the household with her story over breakfast it was time for some wedding baking. Laurel and Heather allowed Janet to help them make some desserts for the big event and Janet loved being helpful and hanging out with her daughters. The house was buzzing all day and Janet really fed off that energy. We got into the pool for a good long swim where Janet did her best ever take off for swimming on her tummy and also took a breath while swimming. As long as the water is warm she continues to improve in the pool.

The big day finally arrived and after the prerequisite good morning, the first words out of Janet’s smiling mouth Saturday morning were, “Laurel and Raj are getting married today”. She was up and going by 8:30 and you could tell this is what she’d been waiting for. Again, the house was buzzing as Cam arrived then Mary/Gaga and Keith after their massively delayed flight from Toronto. The last bit of decorating involved cutting out some foam hearts to lay on the pool and Janet was happy to help with that before Heather and Laurel took her behind closed doors to get dressed. After I don’t know how many mimosas the ladies emerged looking stunningly beautiful.


It must have been water proof makeup the girls put on Janet because as soon we sat down for the ceremony, the tears started flowing but her face stayed radiant. The ceremony was blessedly short due to the heat but very truthful, practical and personal. Thanks Roger and Carrie for being such special people to our family. Laurel and Raj each did a terrific job delivering their vows to each other and I can’t think of any better way for Janet to witness their “second” marriage. Janet’s short term memory is showing signs of improvement and I’m sure she’ll remember this day for a long long time. The “reception” part of the day was very casual with everyone invited to jump in the pool, play bocce or just hang out. Janet happily went for a swim and loved being in the water with a bunch of others especially Laurel and Raj’s niece and nephews. A few years ago Laurel and Raj dressed up as mustard and ketchup for Halloween LaurelRajMustardKetchup so in preparation for their first wedding Janet made bride and groom mustard and ketchup bottles that were to be placed near the cake in fun. She finally got to present them this time and got a good laugh for doing so.

I thought Janet might be so wound up she’d never get to bed but she was lights out at 10:30 after a very very good day.

Up early again, the goodbyes started early Sunday morning with Cam running out the door first with Heather and Allan scheduled to follow after breakfast. Note that I said Heather and when you are talking about her and flying you can bank on a delay. Sure enough, they were able to stay for lunch before heading to the airport for a trip that ended up being four hours longer than planned and minus a set of luggage too. I don’t have to tell you who’s do I. It was nice to be able to chill and visit during their delay so that was the silver lining. As expected there were lots of tears when the time finally came but those were cleared up when Janet was reminded of all the fun things that happened over the last few days. Having only active seniors left to entertain we headed up to the Myra Canyon trestles for a nice walk. Unfortunately I turned too soon and we ended up at the wrong end of the park where the road is very bumpy and the trail to the trestles not exactly wheelchair friendly. It was still a nice outing and a good break from the heat for those that wanted it. After a nice swim and hot tub we all went to dinner at The Rotten Grape. Janet was a little uncomfortable in the backless bar stool this time so we switched to a tall stool with a back and that seemed to work much better. We said goodnight and goodbye to Mary/Gaga and Keith before winding down with a little TV and the lights going out at 11:15.

I think by this time Janet was starting to feel relieved that the craziness was over. She slept very well Sunday night and woke up happy and ready to start Monday at 8am. My mom joined her in watching Pick a Puppy and Janet picked the right one again and is now 4/5 all time. After a brief walk around the KGH neighborhood Janet had two very strong swimming sessions which included a first ever walk using the parallel bars. We had attempted this before but Janet’s strength and balance just weren’t there, now they are. Fun to watch. We had a nice chat with Moira on the way out and Janet was beaming as she told of Laurel’s wedding. We are so blessed to have so many caring people involved in Janet’s rehab and even though Moira is no longer directly involved she still makes time to connect with Janet each time we see her and the more that happens the more Janet connects back. Good stuff. My mom loves soup and sandwich places so we hit The Marmalade Cafe for lunch before dropping her at the airport for her on time flight to Nanaimo. Mom, we are grateful you could be part of this weekend and thank you for the turkey dinner, the huge amount of yard work and everything else you did for us. By the time we got to the Connect parking lot Janet was in tears and not wanting to go back. We worked it out, she had a nap then a really good dinner followed by a solid workout on the Shuttle. We couldn’t let a beautiful evening go to waste so we walked over and watched Karl and Humberto play soccer.


Janet really enjoyed that and was in a good enough mood to do forty five minutes in the Standing Frame before bed. She timed her workout really well and drank an entire bottle of water during it with no nagging from me. A first!

Janet is getting to be more and more like the former Janet all the time now and when she called me Tuesday afternoon I heard her true voice for the first time since this all started. It was exciting and a little creepy at the same time. When I arrived she was very chatty and we talked in her room for a long while before going for a walk. Along the way we practiced the months of the year stating the special days that occur in each. Janet got most family birthdays right and shocked me by getting the first day of Spring in March. I hadn’t even thought of that one before she said it. With a very busy Wednesday looming Janet went to bed after her evening workout a little unsure of what to expect.

Jess brought Janet to KGH this morning where I met them for a chat with Dr. Miller. He reinforced the need for Janet to be at Connect for the forseable future and as long as she is improving. He noted a huge improvement in Janet’s cognition since he saw her a month ago and gave validity to my suggestion that the Baclofen was having a negative effect on her. Janet impressed him so much this morning that he told her “with your brain injury, you should not be talking to me the way you are now”. Janet accepted his compliments and praise almost completely today saying she “feels more alive”. Awesome meeting. On our way out Janet’s celebrity status took over as a bunch of nurses stopped to say hi. Janet spoke very clearly and smiled a lot this time showing her growing confidence. While she was in the bathroom over near the OT department, Erika, the head nurse came looking for us. She was about to interview Emma for a position on the Rehab Unit and knew we’d like to see her and vice versa. It was great to see Emma again, in my opinion the best nurse Janet’s had during this ordeal, unfortunately all Janet got was a peak through the bathroom door. I’m sure we’ll see more of Emma soon as I told Erika there’s no need to interview her, just hire her, and she agreed. Our next appointment was the hand clinic to see about a splint to assist with positioning of Janet’s right wrist and hand. Julie took a good look at Janet and fashioned a splint right before our eyes that is already helping. When I took it off at bedtime tonight Janet’s hand was very relaxed and I was able to open her hand with her wrist fully in a neutral position, something I haven’t been able to do since this started. For now Janet will wear the splint two hours on and one hour off with a follow up with Julie scheduled for next Friday. We rushed back to Connect for our team meeting and had a very productive session with the Connect team. Everyone is pleased with Janet’s progress with Mary Lou describing the difference in Janet’s speech like “night and day” over the last seven to ten days. I am very thankful for the hardworking and supportive group of professionals working on Janet’s behalf. Automatically thinking Janet would need a nap after a day like that I proceeded to get her ready to do so. She allowed me to lay her down but as soon as she realized what was going on she got quite upset and got herself right back up insisting she do the Standing Frame now because she hates doing it late at night. She did a full hour in it followed by a really good gym workout with Garrett.That left the evening free for a nice walk and an attempt at doing some video for this blog update. I wasn’t happy with it so you are stuck reading my words again. Maybe next time.

As long as Janet continues to improve she will stay at Connect and I’m grateful we have that resource. There will now be an effort made to get Janet busier around there and we will explore some volunteer opportunities in the community as well. It feels like another door to Janet’s recovery has opened and I pray we can take full advantage of that to push her to the next level. Thank you readers for all your support and thank you to our Lord and Savior for His Love, Mercy and Grace.



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.

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.

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.

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.

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.


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.

Anniversary. KGH revisited. #TSJ

Janet was at it early this morning working out with Tez doing some standing and walking at the parallel bars. Janet still says it’s difficult but she isn’t quite as emotional about it all as before. She still has not had a BM even with the Peg-Lyte so nurse Jen recommended a trip back to ER and that was suggested by Janet’s GP as well. I had hoped to delay the return until tomorrow in part because today is the one year anniversary of Janet’s aneurysm and the last place I wanted her to be was the hospital. However it was the right thing to do.

Lorne took Janet from Connect to KGH and I met them there, saving me a trip out there and back. Janet was in good spirits and seemed OK with the idea and prepared to wait. The ER wasn’t nearly as busy today so I had high hopes we’d be in and out pretty quick. Last time was five hours, today two and a half. Dr. Eppler saw Janet today and he confirmed that it was good we brought Janet back in but at the same time he wasn’t ready to bring out the dynamite yet. He consulted with Dr. Agnew, the GI, and he recommended a drug that Dr. Eppler had never heard of and the KGH pharmacy didn’t have in stock. He seemed super confident in it though and also ordered Janet to be on a slightly different formulation of the Peg-Lyte she’s been drinking and that should help Janet stay regular once she gets cleared out. He gave Janet a dose of it as we left and she drank it quickly on the way back to Connect. The plan now is to try this new drug along with the new Peg-Lyte and if there’s no result soon Janet will go back to the ER for the dynamite treatment.

It was dinner time when we got to Connect and Janet ate heartily. Not sure where all the food is going but she seems fine. Garrett negotiated a bike ride from Janet afterwards and she performed her best ever. The deal was more than twenty minutes but less than thirty. I went in to see how she was doing and she just eclipsed the twenty five minute mark. I didn’t let her know I was there and she continued until she went over twenty eight minutes. Garrett and I showered her with praise hoping it sinks in that she is improving. The praise continued as Janet took a much needed bio break and produced a very small BM. Something is better than nothing and I credit the long bike ride with moving things along a little.

Janet was quite insistent that the rest of the evening be fun and she elected to lounge while watching basketball in the living room. That was a perfect way to end another busy yet productive day for her.

I thought about a lot of different ways to acknowledge this anniversary. A video timeline or a re posting of key events along the way. A photo montage showing the very obvious progress Janet has made or having her say stuff on camera today. As I thought about it and talked about it with her it became clear that celebrating this day would be inappropriate. Janet still gets very emotional thinking about the past year and even though she doesn’t remember much it still brings tears. I don’t want to generate more tears. I also realized that the anniversary probably means more to those of us who have been alongside Janet during this journey than it does to her. So in that regard I want to thank all of Team Save Janet for your continued prayers, visits, virtual visits, care packages and words of encouragement. Janet and I would not have managed to get this far this well without all of you. Looking back at how much has changed in the last year I have nothing but optomism for what the next year holds. God continues to place the right people in our lives at the right time and through His grace all will be well.