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”.

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.

One comment

  1. Love your videos Janet (Thanks Kiko and Larry), it’s a great way for all of us to stay in
    touch with what you’re doing. Wonderful to see that smile and hear your giggles! 🙂 JF

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