Aneurysm

Water Baby. If only Janet would drink like she swims. #TSJ

This has been a relatively quiet week with Janet holding her own in most areas with some more signs of increasing assertiveness. Swimming and hot tubing remain her favorite activities with the Standing Frame taking over from the Shuttle as her least favorite thing to do.

Thursday was an interesting day for me as I found Janet curled up on her bed, awake and upset, saying she’d been “yelling for help to get out of here”. Her pendant alarm was right beside her and when I asked why she didn’t push it for help she all of a sudden seemed to feel silly that she hadn’t thought of that. There was no reason to want out other than she couldn’t sleep so from that point on it was a fun day. We went for a long walk to the eastern shore of Wood Lake and saw a large deer feeding on the side of the road. Or at least I did. Despite the thing being only twenty meters in front of us then moving towards us on the road before hopping into the bushes only ten meters away, Janet never saw it. We had lots of time and it was on her left side so I thought for sure she’d pick it out but even with me pointing and turning her head, she saw nothing. As we continued our walk Janet was able to see and tell me about things like boats on the lake, large trees and other landmarks and enjoyed watching a train roll by. I had commented on how close to the tracks a number of homes in that area are and how annoying it must be when a train goes by. We agreed it probably doesn’t happen often. Of course, less than five minutes later we heard the whistle of an approaching train. It was fun watching it and Janet saw it no problem. To wind down the day I assisted Janet in typing an email to her mom. I had to guide her to most of the letters but she did a great job in thinking of what to say and spelling the words as we typed. If y’all wish to correspond with Janet via email her address is jedieno@gmail.com , just remember I’ll be reading them to her and helping with any response.

Janet was ready to go home for the weekend when I arrived at Connect Friday afternoon. It had been a quiet morning and even though we had no big plans she was anxious to go. We stopped at Save On along the way and used Janet’s VIP parking pass for the first time. I must admit its pretty sweet to be able to park pretty much at the front door in a nice wide spot and not have to worry about someone parking too close to us. Janet was a big help shopping and enjoyed choosing things on her own. Her help continued as we made a Quinoa salad for dinner with Janet doing lots of chopping and tossing. We had dinner outside with Janet reestablishing her authority as the corn on the cob expert saying “this is the best corn of the year”.

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After a good stretch in the hot tub we watched So You Think You Can Dance with Janet’s legs in the extenders. She loved the show and at one point asked for a paper and pen as she waned to “tell someone I want Amy and Fik-Shun to win”. Not sure who she was going to tell or why but I love the spontaneity of that thought. As bright a moment as that was a short time later she didn’t know my name or that I’m her husband. I’ll let it go as being really tired and that seems to be the pattern with Janet knowing me. She’s good in the morning then by dinner time I can be any name under the sun including ones she makes up herself.

Saturday was a sleep in day with breakfast happening outside closer to lunchtime than breakfast. We had a good Skype chat with Mary/Gaga then got Janet’s nails cut and cleaned in readiness for the arrival of family next week for Laurel and Raj’s wedding 2.0. After a nice walk and a good lunch we took off to do some shopping before church as Janet needed shirts and I needed some shorts. It was fun shopping with Janet and she was a big help to me in choosing colors. As we were settling in for church Janet asked to have her right arm up on the armrest of her wheelchair. That’s a first and a really encouraging sign as it wasn’t long ago that it hurt her to have her arm in that position. After church, Janet asked for a burger for dinner and was excited to sit outside at Red Robin and devour a Mediterranean Chicken Burger. I had promised her we’d watch a movie that night and she didn’t let me forget even thou it was nine o’clock by the time we started it. We watched Safe Haven which is actually pretty bad but we enjoyed it. Janet was quite restless going to bed and five minutes after lights out I found her on her tummy laughing. She wanted to lay on her left side but turned the wrong way and couldn’t get back. With a little help she got there and fell asleep quickly.

The Sunday breakfast tradition seems to be watching Pick a Puppy, a show that follows a family as they choose their pet. It’s very cheesy but Janet loves it and in the true spirit of our TV viewing habits, we’ve made it into a competition. Janet is now three for three in choosing which puppy the family ends up picking. In trying on her new shirts we’ve determined she is no longer a size XS and has graduated to size S. That means more shopping come Fall. Yea. There are enough weeds and plants that need pruning in the front yard that we were able to spend over an hour out there with Janet doing a lot of pulling and clipping. Hard for her to squeeze the clippers sometimes but she enjoyed the challenge and being in the sun. Her reward was a nice swim in a ridiculously warm pool where she did some great lower leg kicking. This is the first time in a while I’ve worked on this with her and once she thought about it she did well with her left and managed a little movement a couple times with the right. She closed her water session with a relaxing hot tub where she got so relaxed that I actually let go of her as she floated on her back. As soon as she realized I’d let go she started to sink but it was pretty cool she could float like that. I tucked her in at 9:45 and twenty minutes later heard a little bang from the bedroom. I was startled to see Janet sitting on the edge of the bed where she had been rummaging through her bedside table. In her hand was an old pair of glasses and she said to me “I’m trying to find the ones that work”. She only cried a little bit then asked to sleep on her left side and as soon as I helped her there she was heading off to la la land. Or maybe that’s where she was when she was sitting up, I don’t know, but it was cool she could get herself up and sitting. A little flash of houdieno.

Monday we were back in the Rehab Pool at KGH. It had been over a week and I was anxious to see how Janet would do. Kiko graciously came along to be a cheerleader but I put her to work as videographer and her is the result.

We enjoyed a yummy lunch at Marmalade Cafe with Kiko afterwards. Nice way to spend a sunny afternoon. Thanks Kiko!

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On the way home we stopped at Save On so Janet could pick out the fruit she wanted to take to Connect for the coming week. The team agrees that Janet needs to eat lots of fruit as she doesn’t drink enough water and since she loves it that’s a pretty easy thing to do. From now on, like home, her breakfast will be a large bowl of fruit and yogurt, a piece of toast and peanut butter and a little coffee if she wants. Coupling this with as much fluids as possible should get Janet more regular on the toilet. I can report today that it seems to be working.

Tuesday morning was busy for Janet as she got back into the Connect routine. I took her out of that for the afternoon so she could get her haircut.

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Chelsea always does a good job with Janet and the whole experience was fun with Janet being much more talkative than last time. For her evening workout, Janet was good about going on the Shuttle but put a big pout on during her Standing Frame session. So much so that I thought she was quite rude to one of the other residents who tried giving her some encouraging advice. Janet was having nine of it and gave that person the silent treatment until they complimented her on her hair. That brought a big smile and a thank you.

In the Standing Frame tonight, Janet was in a much better mood and surprised me by accurately predicting when the session was over. I had set nine o’clock as the end time and using her watch she guessed at 8:43 that she had twenty minutes left and at 8:55 she knew there were only five minutes left. The funniest bit was when she stared at her watch for the last thirty seconds and when it reached 9:00 she proudly held it up to me and said “I’m done”. Indeed.

Cognitive gains like that continue and are very encouraging. Even her negative outbursts are good I guess as she is expressing her opinion and feelings much better. She still lacks confidence in a lot of things, using a stock answer of “I don’t believe it”, when someone tells her something good about herself or tries to explain the benefits of doing something she doesn’t like doing. The only way I see of battling this is to identify every moment she does something well and explain why it’s good and where it can lead her. Pill swallowing is getting much better for Janet as well with most doses going down on the first attempt now with hardly any coughing. I notice she coughs a lot less drinking apple juice and drinks it a lot faster too. Not sure why. Janet still has a hard time with my name and knows it better earlier in the day as opposed to late at night. The family names usually come to her pretty quick but she needs prompting for the staff members names usually. We’ve stared reading at night again and Janet seems to be understanding what I read a little better now too.

This coming Tuesday we meet with Dr. McCann for another round of Botox. I think the timing is perfect as although there is still good flexibility in both of Janet’s legs the left one is tightening up and the right one is pulling into the left a lot. That hasn’t stopped Janet from doing well on the Shuttle and her pole transfers a very good with a noticeable improvement in balance. This past weekend was the first one driving the Vibe and the first one that hasn’t left me with a very sore shoulder as I no longer have to lift Janet into the car. Nice.

Looking forward to more progress this week and the arrival of family ahead of Raj and Laurel 2.0.

Sister Act. Fun times with Ontario peeps. #TSJ

This was pretty much a fun filled week for Janet as her sister Leslie and her husband Gavin were here for most of it and the weather finally kicked into summer mode.

Thursday started off slow as Janet seemed rather tired in the morning but her energy increased as the day wore on. Jess reported that Janet made it through her parallel bars workout but was nodding off by eleven. Mary Lou gave a similar report saying Speech was pretty much a none starter. I couldn’t really think of why Janet would be so tired. She says she isn’t sleeping well at night but there’s no accurate way to measure that. I considered making a quick doctor’s appointment for her but her doctor is on vacation until July 9th and I didn’t see any point in going to the substitute. By the time we were on our way downtown for an appointment Janet was starting to perk up and by the time we got home she was fairly bright. We went for a nice long walk while Leslie and Gavin made dinner which we enjoyed very much, including a glass of wine, something Janet hasn’t had much of lately. Her conversation skills were good and she was even cooperative about going back to Connect. There was a meltdown in the car on the way out there as she expressed her disbelief in the fact she is doing really well. She was quite emotional but got it together by the time we arrived and managed a half hour in the Standing Frame. That was all I was going to ask for as it had been a busy day. I still haven’t learned to stop nagging her about water and that night Janet actually swore at me about it. I’ll take it as a positive expression of her feelings although at the time I told her she was being quite rude which of course brought the tears. Janet ended the night with a spectacular pole transfer to her bed ninety percent unassisted.

Friday started out a little better than Thursday and Janet was waiting for me in the living room knowing she was going home for the weekend and Leslie and Gavin were there. The big event of the day was wine touring to the four wineries in our neighborhood, Tantalus, Summerhill, St. Hubertus, and CedarCreek. Everyone had a great time and Janet hung in there very well drinking water in between each stop with only a gentle reminder. We all loved the wines at Tantalus,

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thought Summerhill was delightfully tacky,

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learned from our friend Dominic the wine maker at St. Hubertus,

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and agreed CedarCreek is gorgeous.

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Dinner was a massive amount of sushi enjoyed outside until around nine when Janet started getting a little cold. That’s what hot tubs are for and just before eleven I said goodnight to a tuckered out Janet.

I don’t know if it was the wine, sushi or the relaxing hot tub but Janet woke up Saturday morning in one of the brightest moods yet. I’ve never heard her laugh so hard and loud as she did while telling Leslie the story of when Heather accidentally ate a huge glob of wasabi. You could hardly understand a word she was saying but every once in a while a key word would pop through and you could follow the gist of the story. But the story didn’t matter as it was pure joy watching Janet laugh so much. The laughter continued as we hauled out some old dresses Janet had from her grandmother and Leslie tried them on for fun. I have to say they weren’t as hideous as I thought they were going to be. We got out for a nice walk before lunch then it was time for a swim. Or so I thought. Apparently twenty nine degree water is too cold for sensitive little Janet so back to the hot tub we went as we spent a nice afternoon on the deck. This was Leslie and Gavin’s last night in Kelowna so we planned a dinner out at a new restaurant called Smack Dab. In the process of getting ready I left Janet on the toilet while I fed the dog. A few minutes later I heard a cry come from the bathroom so I ran back to find Janet in tears on the edge of the seat telling me “I want to get up and put my makeup on myself”. Wow, where did that come from? No one had mentioned make up to her that I heard so I was really impressed with that statement and how she thought she could get up and do that on her own. One day. Dinner outside by the lake was yummy and a terrific way to start the farewell proceedings for Leslie and Gavin.

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Dessert in the hot tub at home was a fun way to end the day.

Leslie and Gavin had to leave us at eight AM Sunday and Janet woke up at 7:30 but was too tired to get up, so the goodbyes took place bedside, which limited the tears, thank goodness. It was fun having some Ontario peeps around for the week and Janet benefitted immensely from all the social activity. The first part of Sunday was pretty quiet. We made it to church but Janet was kinda sleepy and had a good nap when we got home. The pool was a little warmer as was the air temperature so Janet got some good swimming in, doing the best kicking she’s done yet. The house got super hot by dinner time so we headed downstairs for the evening and watched So You Think You Can Dance. A pretty good recovery day for Janet.

Monday was all systems go in the morning as Janet woke very chatty and bright. She had a good Skype chat with Laurel before the first swimming session of the day. Thirty one degree water apparently is still a little cold but Janet tolerated it and swam her first full length of our pool on her tummy complete with full freestyle motion of her left arm. Impressive. Our good neighbors Barb and Gary joined us for a glass of wine that afternoon and Janet started to tire noticeably then. Nice to share Canada Day with good people though.

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Janet and I went for a nice long walk to shake the cobwebs out of her and it seemed to work. When we got back I had her try and transfer into and out of her Pontiac Vibe and she did so almost effortlessly. I managed to get the wheelchair into the back without folding any seats down and so decided to go for a spin to make sure Janet is comfortable in that car. It’s been parked since last September and I when I told Janet we were going for a ride she said “isn’t that illegal?” I was shocked she came up with that and asked her how she knew and her reply was simply “I just knew”. Indeed. It now makes total sense to use the Vibe since Janet can transfer into and out of it with only a little help from me and its more economical to run as well so the switch will be made. Our second swim session of the day was a chance to cool down if nothing else but Janet did some good kicking and loved me helping her “jump” up and down in the water. Big smiles.

Connect had some staffing shortages Tuesday so Janet was unable to do much of anything the first part of the day and complained of boredom when I arrived early in the afternoon. She did have Singing with John which she acknowledged was fun. She must’ve been bored though as she agreed to go to the gym with me and did a solid job on The Shuttle. With lots of time before dinner we set out on a very hot but interesting walk to a wildlife sanctuary down the road from Connect. Most of the wildlife was hiding from the heat but we could see the potential for some cool sightings in cooler seasons. Janet did a great job chopping up some chicken for a stir fry when we got back but then got a little negative as we practiced writing her signature for a while. She wasn’t doing very well so decided to go with the “I don’t care” and “it doesn’t matter” lines that make me mad. Garrett saved the day by taking her to the gym for a full workout that he reported was very good. Janet was in a much better mood after the exercise and wanted to go for a walk. We played I Spy along the way and she did reasonably well getting a satellite dish for something round and the sun for something setting.

Jess reported Janet had a very busy morning today with an hour and a half in the gym doing every type of exercise she knows followed by Speech with Mary Lou who reports Janet has rebounded nicely from the sleepy times last week and continues to build her vocabulary. She was in bed when I arrived just before two but wide awake so I got her up and we went on a long walk in search of a Fresca. I got a good workout, Janet got some more sun on her and we both enjoyed the drink after the long search. I had Janet practice some handwriting before dinner and was pleased with her progress. Garrett and I took her to the gym after dinner for another good go at The Shuttle followed by a good stretch from Garrett. Another request for a walk resulted in another game of I Spy along with learning compass directions. Janet and I were both impressed by how friendly people in the neighborhood around Connect are. We got lots of hellos and waves tonight. Almost makes us consider living there. Almost.

Janet continues to make progress in all areas except toileting and I’m a little concerned that she is feeling bored at Connect. Her increased brightness has allowed her to go a number of days without a nap now and its only because of the nice weather that we’ve been able to get out and do something. I think we need to find more things for her to do during the day. Praying for continued healing, more control of her right leg and perseverance in doing the good things that aren’t so much fun.

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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.