Janet, A Success Story. June 27. #TSJ Staff BBQ

To try and compare this to what will be a typical Friday at home for Janet wouldn’t be fair as we had a lot to do in preparation for the BBQ we were hosting this evening. Janet started her day with a shower which was no where near as easy as that awesome bathroom we had in Ottawa. We bypassed filling the tub up this time though and had Janet stand pretty much the whole time. It was faster but not any warmer as we couldn’t leave the water on as it would spray everywhere. If anyone has a spare 45 grand we could make our bathroom like the Ottawa one. Anyone?

Today was Mary/Gaga’s birthday and Janet remembered all on her own and called her mom just as her and Keith were heading to Toronto for a Blue Jays game. Janet’s memory continues to improve as does her cooking skills. She was a big help in prepping all the food for this evening and even did a good job vacuuming. Those activities took us right up to nap time save for a brief walk in the sun which was well deserved.

Janet didn’t sleep at all after trying for an hour so I got her up so she could set a few things out before people arrived. First on the scene were Brian and his daughter Olivia who Janet took an immediate interest in. Surprise surprise. Olivia didn’t take to Janet as quickly as she took to the bins of Barbie stuff Janet suggested we bring out. Good call.

Janet right at home

Janet right at home

The evening was very enjoyable as we got to wait on some of the staff that have worked so hard with Janet the last year and a half. Janet has a hard time keeping up with the conversation in group settings but was happy to sit back and listen. We are blessed to be able to host good people in our home.

Praying for a night of deep and reenergizing sleep.

Janet, A Success Story. April 20. #TSJ

I hope everyone enjoyed as blessed an Easter as we did. It was awesome to linger this morning having nothing scheduled until a Skype chat with Leslie at 11. Janet called time to get up when she was ready and because it was Easter, I served her breakfast. Of course she wouldn’t stray from her toast and coffee except she’s added a small bowl of fresh fruit the last couple of days and I hope that trend continues. The talk with Leslie seemed to go well until some technical issues arose. I stayed away trying to have Janet fully engaged and responsible for the conversation. She seemed pleased afterward.

A couple of days ago I mentioned I would try and have Janet take some steps unassisted. She has made a few attempts with success on three occasions. Unfortunately I wasn’t able to capture them on video as I need to be right there with her and can’t control when she’ll take a “free step” so the camera angles have not been good. Hopefully we can get some this week at Connect. Janet is still very scared of trying it and doesn’t believe in herself yet but I’m going to keep pushing the envelope as we’ve now seen that she can do it.

Heidi and Jack graciously invited us for Easter dinner today and we enjoyed a lovely afternoon on the deck with great food and conversation. We are blessed to know them both and call them friends. Great day!

Returning to Connect was a possibility after Heidi and Jack’s but it was too early so I brought Janet home for a while longer and we enjoyed a stroll around the neighbourhood. One of the nice things about living here is you are pretty much guaranteed to see some of your neighbours when you go out and we saw a bunch this time which is good for Janet as she hasn’t been able to connect as much as I have. Neither of us were hungry for dinner so we scanned a bunch more pictures into the computer which Janet really enjoyed and did a good job of dating for me. She was quite giggly after singing her way back to Connect later and eagerly shared her Easter chocolates with those that were around. We read and talked and by 10:30 she still wasn’t asleep despite the lack of a nap but there were lots of yawns so I’m sure she’ll rest well.

Praying for a week of strengthening and confidence building.

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

Mostly because of the dog, our day got off to a rather early start which was kind of nice. We were finished breakfast before we often have started it and that left lots of time for other things. After making her own breakfast, coffee first of course, Janet had some emails to respond to and once completed asked if we could work on the old photos. She did a great job with the scanner again and we got a nice pile of paper transferred onto the computer.

I convinced Janet to try something other than grilled cheese for lunch and she enjoyed making a turkey breast sandwich for herself. Her kitchen skills are improving steadily and she needs very little coaching as long as she’s awake enough.

We tried to finish watching the Ladies Figure Skating today and got through the first half before Janet needed a nap. Knowing that the Olympics end tomorrow has Janet a little sad but The Voice starts Monday and that should fill the void nicely.

Yesterday’s pants shopping needed correcting today and as we drove to the mall before church we both wondered where the day had gone. We had that early start and it felt like we had so much time but it just flew by. We exchanged Janet’s pants and picked up a few other things Janet slowly lost her energy. The mall is bad for you. I wasn’t expecting much from Janet heading into church but she pulled off her best transfer into her seat yet. Very strong and deliberate and following my verbal cues exactly. While standing during one of the worship songs Janet let go of the pew in front of her for a few seconds and scratched her nose. I don’t even think she realized she was free standing but I sure did. Nice!

Janet helped put dinner together and chose to watch the rest of the figure skating after that which was a bad call as she fell asleep with six skaters to go. Guess we’ll try tomorrow. Praying for a solid night of sleep and a productive Sunday.

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 , 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”.

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!

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.

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.

Two Sleeps #TSJ

Janet met me in the hallway as she returned from a reading session in the Den. She was quite smiley and chatty saying she was having a good day. She mentioned going to the gym and having lunch and reading and while she tried hard to say what she had for lunch, just couldn’t get it out. Lorne reminded her it was grilled cheese and she smiled big when she heard that. Sensing she needed a bit of a break after reading I lead her to the living room to watch some TV before Brian’s scheduled session at three.

It was good to chat with Brian this afternoon so we could all get up to speed with each other. He reads this Blog daily so is well aware of what Janet has been up to and that enabled us to talk about bigger picture items such as the wheelchair, food and transfers. I requested a few tweaks to the chair before we purchase it and Brian is confident those will be done without problem. He had read about the beef stew incident and I was able to tell him about Garrett’s meal plan that is in writing somewhere and he said he’d find it and follow up on its implementation. He encouraged a discussion with Tez over which form of transfer Janet should be focusing on now. I’ve been using mostly a standing transfer where Tez would prefer using the sliding board probably feeling it’s too early for Janet to do the standing thing and he’s probably right. I paid close attention to our transfers today and although Janet is stepping with her left leg without cueing now I notice she is not really holding her body that straight, I’m doing most of that, and her right leg is taking virtually no weight at all. I’ll use the sliding board between her bed and wheelchair and other chairs and will stand her for toilet transfers.

Time for a bio break after Brian’s visit. Success again! I then had Janet put her laundry away which she seemed quite pleased to do and was happy when she completed that task. I need to find more chores like that for her to do as she is now not at all interested in the board games. The last couple of days she has demonstrated some real assertiveness and I can sense her wanting to do more constructive things. After a brief rest time she started getting up from bed and got a little mad at me for being in her way. I now realize that reaction came from a “I can do this myself” perspective and she did. I backed right off and said nothing and she got herself all the way to sitting and was quite pleased.

We headed down to see what was happening in the kitchen where Garrett was preparing a nice salmon dinner. Janet asked if she could help with anything but most of it was done by that time so we watched a little more TV until dinner was served. Janet really enjoyed the meal and was too full for dessert. We hung out in the living room for a little while after and I threw some family geography questions at her. She did pretty well, correctly answering where she was born, where Andrew lives and where we met. We had a heated argument over where her mom and Keith live with her finally relenting when she remembered we visited them in Collingwood a couple of summers ago.

I have been counting down until Thursday when Janet gets her peg tube removed and think I am more excited about it than she is. Only two sleeps to go! Originally I figured that was because I deal with it way more than she does but tonight it came to the surface that she’s afraid it will hurt when it comes out. I explained as much of the procedure as I know to her and then changed the subject to focus on the more fun things we are doing that day and she calmed down then. The time I’m spending with Janet is split pretty evenly now between moments of heightened awareness and real insightfullness and moments where she just isn’t processing things effectively. We had another talk on the importance of the afternoon rest time this evening as she lost her energy before 7:30 tonight where as when she has that rest she can go strong until 8:30. I got a little bit of a “so what” from her but I think deep down she knows the rest makes a difference. Before bed I read to her a Christmas letter she started writing a couple of years ago that I found while purging some cupboards today. Janet’s writing has always been very difficult to read and this was no different and we both had a good laugh trying to decipher what she had scribbled. Janet says she remembers writing that letter and I believe her as she wrote some things there that are true Janet things to say and I could see the recognition on her face before she even said anything. Cool.

Praying for rest tonight and an active day of learning and recovery tomorrow.

Marvelous Monday #TSJ

A very alert and smiley Janet greeted me this afternoon as she watched TV in the living room with Curtis, Clint and Humberto. She was able to accurately tell me a few things about her day so far and Curtis said they had a strong workout in the gym this morning. He did some arm work with Janet then Tez joined in for an hour long session working Janet’s legs. They were able to get her onto her tummy which allowed for some great hamstring stretches. Curtis thought Janet was much more limber than previous and seemed pleased with how things are progressing. I took Janet up to get weighed and can report another gain although this one is a little too large to be believed so I’ll check her again in a couple days.

In the first hour I was with Janet she twice asked to go to the bathroom and was successful each time and right after the second one she suggested she have a rest. I asked her if she wanted to lay down on the bed for a while and she said no. I asked her what she meant by rest then and she said “rest under your chin”. I figured she meant I was to lay down with her and when I suggested that she agreed and slept for an hour and a half! I guess she really did have a busy first half of the day.

Her nap took us right to dinner time which was a nice piece of chicken with mashed potatoes, carrots and gravy prepared by Crystal. Janet ate it so fast I thought she would want more but she was full. I tried to get her to drink more of her water but got the most defiant response yet and it took me twenty minutes of convincing including switching to my plastic water bottle to get her to drink. Then we went off to Skype Andrew. Ever since waking from her nap Janet just couldn’t get her loud voice going until we connected with Andrew. She wasn’t always making sense but she was pretty loud. Crystal was going to give Janet a shower so in trying to be efficient I asked Janet to brush her teeth while we waited. Again, huge defiance, so much so that I had to tell her she wasn’t being very nice. Not sure what brought that on especially after such a good afternoon nap. Could be just a heightened sense of awareness as she was pretty intent on doing things herself and not wanting to be “lead”. She always did like being the leader.

The shower tired Janet out nicely and she was tucked in at her normal ish time and looking ready for a good sleep. Praying for a healing night’s rest and an informative session with the eye doctor tomorrow.

Wedding Day #TSJ

A beautiful and busy day today. It all started earlier than anticipated as Janet woke up around 7:30. Thankfully she wasn’t in a hurry to get up so we were able to linger in bed for a bit before starting the day. After breakfast we got a quick Skype call in to Heather then Courtney dropped by for a visit. It was nice to get caught up with her a little bit and she cut and painted Janet’s nails in preparation for the wedding. Getting Janet dressed for the wedding was harder and took longer than anticipated but we made it right on time and naturally the bride was late so all was well anyways.

The more Janet and I go out around Kelowna the more a whole new world is opening up to me and I must say I’m not impressed. Prior to Janet being sick I was always aware of accessibility issues and certainly noticed ramps and special doors wherever we went but never looked closely enough to see how effective or well maintained those features were. Last night at the little Italian bistro in Lake Country I had to carry Janet up some stairs to get into the place as their wheelchair ramp was partially blocked by snow and only goes to a part of the restaurant we were not going to. The church where today’s wedding was held has a wheelchair ramp that was locked in different places by two by fours padlocked shut. According to the church it’s because of “skateboarders and idiots”. A gentleman unlocked one of the boards for us so we could get to the front door and with help from friends I carried Janet up the seven steps INSIDE the church so we could get to our seats. On the flip side, because of the wheelchair we were able to sit in a spot that afforded us a great view of the ceremony.

It was a beautiful wedding, very heartfelt and genuine, such a pleasure and an inspiration to witness it. There were some especially meaningful moments that reminded me how deep the commitment of marriage is. Janet and I wish Jon and Lisa a life of ever increasing love.

We had a couple of hours to rest before the reception so after a late lunch I offered Janet the chance to nap and for once she thought that would be a good idea. She had a good thirty minute power nap leaving ample time to get to the reception which was conveniently at a restaurant in our neighborhood. No stairs to negotiate at this place and a nice seat ready and waiting for Janet with lots of help from the staff got the evening off to a nice start.

Janet enjoyed being in the lively atmosphere and despite it being a little challenging to talk had a really good time tonight. She ate well, made friends with a little preschool aged girl seated a table away from us, smiled big and greeted all those that came over to say hi. The food was outstanding and the speeches quite tolerable with Jon starting his off with “this is all new to me”. Classic. Janet’s only meltdown of the day came when she saw wine being served at every table and she said ” I’d really like some wine”. I couldn’t say yes and she cried a little. Thankfully there were lots of distractions and I was able to shift her focus.

Nine o’clock arrived and Janet suggested we get ready to go home. Pretty impressive endurance demonstrated by her today. I fully expected her to crash when we got home but it wasn’t until after eleven that she finally fell asleep after a few more candies from the candy bar at the wedding.

Praying for rest and healing tonight and a relaxing Superbowl Sunday.