Mary Lou was quite pleased with Janet’s speech abilities and participation level in their session this morning. I was surprised as Janet seemed to be quiet and talking a lot of Klingon with me. I came back to her room just as they were wrapping up and Mary Lou had Janet sing Row Row Row Your Boat for me and she did so nice and loud and clear.
Lunch was a bowl of vegetable soup and some med laced fruit lax. I was impressed with Janet’s ability to eat after the shape she was in yesterday. We then headed back to her room to wait for a visit from Brian the OT. Garret brought Janet’s laundry in while we were waiting so I had Janet try and put it away. She was definitely more confused than normal but was very willing to try and put things in the right places. Brian arrived in the middle of all this and watched Janet finish the job. We decided it would be good to label the drawers and cupboards to help Janet remember where things are. Brian then spent about twenty minutes with Janet trying to assess what her understanding of her situation is. He found it difficult to comprehend Janet today and I attribute that to still being in recovery mode from yesterday and hoping its not the anti seizure med. One of the side effects is confusion so we’ll have to see how this plays out over the next few weeks. Brian also commented on Janet’s vision challenges. I had planned on meeting with our eye doctor yesterday but that appointment got preempted so as long as Janet remains stable I will try and meet with him next week to discuss a vision test. I actual left to do some work around the house before Brian did his thing with Janet and before I left we agreed that he would put her into nap mode when he was done. We discussed getting rid of the hospital bed and decided that we would start eliminating bed rails to see if Janet can safely be in bed without them. Brian tucked her in and left the two lower rails down. He left the room at 2:10, Garret checked on Janet at 2:45, she was in bed but not asleep. Garret walked past ten minutes later and Janet was on the floor. Houdieno returns! She was fine, just a little scared and we had a good talk about it when I returned and Janet seems to think she can get out of bed whenever she wants to. She later demonstrated a similar feeling towards her wheelchair as she made two good efforts at getting out of it after dinner. Apparently our idea of a regular bed is a little premature. Oops.
Janet was getting up from her nap, she eventually did have one, when I returned at 4:30. She was being helped by Curtis who used a straight on pivot move to get Janet from bed to chair. I didn’t think it would work as it requires Janet to take a lot of the weight, she did it really well! She was also talking much clearer and I was able to get her to agree it was because she had a rest. One day that will really sink in. Dinner was a bowl of Clint’s chili that he made for everyone today. Clint is in his late twenties and has been a resident at Connect for seven months. He is very mobile and loves to cook so he runs the kitchen apparently. The chili was good. Suzanne stopped by for a visit and brought another care package with her. Thanks! Janet and her and a nice chat with Janet talking reasonably well considering the time of day and what she has been through. We said goodnight to Suzanne, made Janet’s bed and did all the other bedtime prep stuff before climbing in to start reading a book the Dr. Miller lent to us. Slow Dance by Bonnie Sher Klein, a stroke survivor who was just named to The Order of Canada. Interesting read so far.
Praying for more good rest and healing tonight and an active day of learning tomorrow.
Today was a bit of a test for me and Janet. I elected to stay home this morning and get some domestic stuff done and also to see how Janet and the Connect staff would handle things. Both Mary Lou and Tez have provided the staff with instructions as to what they need to have Janet do so I was curious to see how that all would go down. I told Janet last night that I would see her after lunch and she said she thought she could handle that. I had lots to do at home so despite my constant wonder of how Janet was doing I was not tempted to go in earlier than planned.
I arrived just after 1:30 and Janet was in her room listening to music, “waiting for you”. She was in a really positive and chatty mood and I saw no signs of her being too stressed or bored. She gave me a run down of her day which she thought was “terrible” but clearly by what she told me it was not. I went to get Lorne’s take on the day so far and he agreed with Janet on the getting up and refusing to eat breakfast part and the going to the gym then having lunch. Janet could not remember Christi’s name as the one who spent some time in her room writing and reading with her but she did remember someone had come in to do that. Lorne told me he toileted Janet after she asked to go. He left her in the bathroom with instructions to push the button on the call pendant if she needed help and walked down the hall about fifteen meters. His phone rang and it was Janet already. She had peed and was ready to get out of the bathroom. A first time successful call for help!
When I got back to Janet’s room after talking to Lorne, Janet was smiling at me kind of mischievously. I looked closer and could see she had something in her mouth. Turned out to be a candy from the bowl I left on her dresser. We used them as nurse bait at KGH but I haven’t told the staff at Connect about them yet. Janet was able to reach the bowl and help herself. I told her Connie would consider that a big no no and her smile got even bigger. As we talked Janet’s words got more and more scrambled and then she said “if I don’t rest it’s harder for me to talk and think”. Finally! She still didn’t want to lay down despite realizing it’s good for her but I offered to join her so she agreed. This time I think she actually slept for fifteen or twenty minutes and after an hour and a bit of quiet time she was noticeably brighter and we went to the gym for a pre-dinner stretch.
Dinner was a challenge as the staff won’t and can’t allow anything other than pureed. I offered Janet a choice of a few things and she chose the left over pasta I brought in despite my warning it would be mushed up. She ate maybe half of it as it’s no where near as good pureed. I plan on having her home for lunch and dinner tomorrow and Sunday so will feed her well then. The staff are aware of the challenge and everyone is hoping Connie will up the diet after the swallow X-ray. While I was watering her after dinner I remembered the Tootsie Rolls in her room. I offered her one and she was all over that idea. That was the first one she was “allowed” to eat without the chewing cloth. She really enjoyed it.
I encouraged Janet to stay out in the living area after dinner and we played a game of Monopoly Deal. First time for both of us and she beat me. We then watched America’s Funniest Videos and Janet actually laughed at some of them. We agreed that most videos were just of really stupid people. That took us to bedtime and the promise of a busy day tomorrow. Praying for a restful and healing night and thanking Jesus for the progress made so far.
These once a day blog updates are shaping up to be the norm as it appears the majority of my time with Janet will be mid afternoon through to bedtime. From what I can tell so far most of her heavy duty activities will be in the morning and early afternoon with things getting quieter by three o’clock. It’ll be a few weeks yet before the true pattern emerges but that’s what it looks like now.
Today started off busy as Sara had Janet in the shower when I arrived and it was after 9:30 by the time she was sitting at the breakfast table. Janet was offered two scrambled eggs for breakfast but chose to have only one. She gobbled it up and I know would have eaten more and I wish she would have as that’s one breakfast she enjoys. It was her call though.
Back in her room I was about to have her put away her laundry when Mary Lou hauled her away for a half hour Speech session. I declined attending as I want Janet to build a relationship with Mary Lou. Janet reported the session was boring but Mary Lou said it went well. She tried an app on her iPad that pops balloons every time you talk loud enough. She thinks this will be a good tool to get Janet’s volume raised and Janet was successful a few times. Mary Lou is concerned about the excessive saliva Janet has and I know Connie is too. We will be helping Janet become more aware of it. Not only did Janet put away her laundry, she also helped rearrange her clothes so it is easier for her to find them. That was a really good exercise to go through and she seemed to enjoy the challenge of remembering where things were and thinking about how to group them in a way that makes sense.
By the time we finished rearranging her stuff it was lunchtime. Garrett was all excited about his beef barley soup but it was a complete fail. I tried saving it by adding some carrot and broccoli and Janet ate a little of it then but I think I’ve spoiled her eating at home so much.
We made our way down to the gym after lunch with Brian and Rebecca promising to meet with Janet there a little later. I had time to give Janet a good stretch on the table mat and was finishing off a stretch of her hand when Brian and Rebecca came in. They spent over an hour with us talking wheelchair, accessible homes, Janet’s vision, the various equipment Janet can use in the gym and how daily activities will be incorporated into Janet’s workout plan. All this will come into better focus over the next couple of weeks. When asked about goals, Brian is confident Janet will become independent transferring from wheelchair to bed etc. and is hopeful she will be able to walk short distances, i.e. around the house. To gauge that possibility he had Janet sit on the edge of the table mat and hold onto a stripper’s (or fireman’s, depending on your gender) pole in front of her. On command Janet attempted to stand up and Brian acted as the muscle for her right leg. She managed to get up a fair ways both times she tried and was clearly frustrated each time that she couldn’t get all the way up. We all praised her effort and Brian was truly happy with her first attempt at that and hopeful he can get her standing relatively soon.
That was a busy day so far and being unsure of dinner I decided to take Janet home for a few hours for a change of pace and some food I knew she would eat. She played with Nash a lot, ate a good dinner followed by a bowl of fresh fruit and a relaxing conversation time. We headed back to Connect for bedtime in anticipation of a busy morning as Tez the PT has promised an early session with Janet.
Thankful for the productive day and praying for restoration of Janet’s ability to walk, use her right arm and hand, total restoration of her vision and the ability to talk loud all the time.
Still in holiday mode Janet and I had a very relaxing afternoon. Lunch was a bowl of pasta and cheese that Janet gobbled up after helping to set the table. When she is eating food she likes I no longer need to prompt her to eat like I did before, now I have to tell her to slow down.
The only way I could convince her to have some rest time was to offer her the chance at laying on the sofa bed downstairs to watch some of the Rose Bowl. With the fire on it was nice and cozy and she at least got an hours quiet time even though she never closed her eyes and was quite chatty the whole time. We Skyped Mary/Gaga and had a brief but loud chat with her and got to see David and his family who are visiting and attempting to do some skiing. A bonus opportunity for a rest arose when Janet agreed to a little stretching action. No change in the spasticity but Janet did have another hour of quiet time and it seemed to give her a nice burst of energy for the rest of the day. It also gave her an appetite as she totally cleaned her dinner plate of chicken strips, fries and baby carrots followed by ice cream. She was heavier for sure as I carried her to the car to go back to Connect.
Once in bed we finished off Anne 2 and agreed it was a good book with an abrupt end. Clearly a set up for the next one. I said goodnight with the promise of seeing her after breakfast and plans to spend the day at Connect tomorrow. I’m hoping the coaches (therapists) are around tomorrow and we can start developing Janet’s program. Praying for a restful night and a day of learning tomorrow.