Swimming day! I was looking forward to seeing how fun the outing to the Y would be and can now see a lot of value in the trip as far as socializing goes. The swimming aspect was not good compared to KGH as Janet found the water in the big pool to be way too cold. I agree and after the session we went wet suit shopping for her. I think there’s huge benefit to Janet going out to public places like that and if she needs a wet suit in order to do it, so be it. Despite the cold water at first she agreed to try the kiddie pool which was warm enough and just deep enough to allow her to swim and it didn’t take long for the smile to come to her face. Janet didn’t totally relax until she was in the hot tub a half hour later though. That was the most social area and I had to almost coax Janet out of there twenty minutes later.
Since we were now going shopping we went out for lunch to Red Robin in hopes of sitting outside. Alas, even though today was nice, there have been enough ugly ones lately for them to close their patio already. We still had a nice lunch and I was able to let Janet eat without being covered in napkins. As long as she thinks about what she’s doing she spills a lot less food now and I can see the potential for being bib free one day. Wet suits are not easy to find in Kelowna but the local dive shop has ordered one in for her to try next week. Here’s hoping.
Back at Connect after a short car nap Janet mustered enough energy for a Skype chat with Heather then asked to have a nap. She woke up from her “nap” quite grumpy and argumentative. I don’t think she slept at all and when she’s tired she gets upset with herself and her situation. Even with the bad attitude she wanted to get her exercises over with and once into the Shuttle routine she started to cheer up. There was a little complaining during the Standing Frame but she still made it through the forty five minutes. We had dinner on our own as it was seven o’clock by the time Janet was ready and everyone else had long since finished. I let her chose the activities the rest of the night and after watching X Factor she asked to get ready for bed. More evidence she likely didn’t nap this afternoon.
So ends another pretty busy day and if you take out the late afternoon melt down, a good one for Janet. Praying for a rejuvenating sleep and a positive day tomorrow.
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.
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.
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.
Jess had Janet pretty much set to go when I arrived at Connect this morning. Like Garrett, she is very good with Janet and I think they get along pretty well. Janet got a little upset about being put on the toilet before we left but that’s the rule, try and go before you go.
On the drive to KGH Janet was reasonably talkative but a little on the quiet side and seemed concerned about something. She said she was fine but she just seemed a little off to me. Thanks to Jess’s foresight we were at the pool with lots of time to spare. This session was not as good as the first one as Janet just didn’t seem to have the energy she’s capable of having. I found it hard to get her positioned well enough to float on her own as she kept listing to the right pretty severely. With that in mind I tried some standing exercises with her first and that went really well especially with the left leg. Eventually Janet warmed up and loosened up enough to make her own way one length of the pool floating on her back. Definitely not in Olympic record time but a first is a first. That was the highlight for sure and we’ll just have to keep working on the other stuff. The good news is Janet was approved to use the pool twice a week now. Mondays and Thursdays starting April 8th. The Monday session is at 10am so I’ll just keep Janet home Sunday nights now, go to the pool then be at Connect by lunchtime. Although her performance wasn’t as strong today she still had fun and that’s something we can build from. We had a nice chat with Moira and Rob on the way in and Janet got a nice hug from Rehab nurse Jason on the way out. Made her smile big.
We did a little grocery shop on the way home and it was nice to have Janet in the store with me and have her be able to help and she likes to contribute. At home and after lunch she protested quite vigorously about having a nap but I’m bigger than her so I won and she slept loudly for an hour and a half and said she felt good afterwards. She certainly has no shortage of an appetite as she polished off the dinner that was waiting for her at Connect even after eating a big lunch. Bob and Fred joined us for an evening of March Madness before Janet finally tired out just before nine.
Today was a good day but noticeably quieter than the last few. Janet’s speech was good as far as the words spoken but her volume level was low all day. Hopefully a good night of rest will recharge her for the weekend. Laurel and Raj are here and will pick Janet up tomorrow and take her out for lunch before bringing her home for the weekend. Janet is really looking forward to that.
Praying for lots of rest, healing and recharging for a fun weekend.