Another good nights’ sleep for Janet and a good start to the day this morning. She knew it was Monday and that we’d being going back to Connect later, she knew there was something else, just couldn’t get the word swimming out. We got to the pool in plenty of time and the first session was alright with Janet’s right leg doing its own thing instead of what she was trying to get it to do. Her walking was not as strong as last week partly because of that right leg or maybe totally because of it. Some days she just seems to be overly buoyant and today was one of them. Janet tried really hard to get her feet down to the pool floor from floating on her back but had a heck of a time today as they just wanted to stay near the surface. Tez joined us for session two and was happy with Janet’s sense of balance and her ability to swim. What he observed from her walking challenges confirmed the need to really go hard at making that right leg stronger. He reinforced that with Janet and will do the same with the Connect staff.
As we were leaving KGH I had Janet drive by what I thought was the room she described to me a week ago or so. No bells went off though and she didn’t even really remember telling me about a room before. I will have to strike sooner next time she does something like that.
Janet built herself a nice sandwich for lunch once we got home then agreed to try and have a nap. I should have bet her as she of course didn’t think she’d sleep but she did for a little bit and helped me start making dinner before having a late Skype chat with Andrew.
The return to Connect was smoother than I expected and Janet cooperated nicely in going on the Shuttle and into the Standing Frame. This was not her greatest Shuttle performance ever but considering the time of day I’ll take it. She tolerated the Standing Frame very well and we enjoyed some interesting conversation with Kieran, a new resident from North Vancouver who’s mom’s name is Janet so he calls Janet mom. He’s twenty four and very positive and Janet liked him as soon as they met. Janet stayed up a little late because of the Kieran conversation but that was a fun way to end a good day. Praying for rest that brings lots of energy and strength for tomorrow’s activities.
Monday, a day to get back into the “normal” routine. Janet apparently was too tired to jump back into her routine so took it pretty easy today with just a short workout in the gym and a little bit of reading for Speech. The rest of her time before I arrived was spent hanging out in the kitchen and living room mostly just watching what was going on. She was pleased to see me when I got there and seemed upset that she hadn’t done much but when she was reminded of what she was offered and attempted she agreed she was kinda tired. That led to a more than an hour long sleep with some of the loudest snoring I’ve ever heard from her.
I was prepared to let her sleep until 4:30 but she woke up just after four and wanted “to do something”. She managed to get herself up from laying down on the bed and elected to go and see if she could help prep dinner in the kitchen. She flat out refused my offer of playing games or reading. Just not into “school” today at all. It’s a good thing we went to the kitchen when we did as the guys had made another beef stew but there was plenty of time to prepare something else for Janet. Bob made her a nice chicken and pasta dish while we laughed at the movie Happy Gilmore. Janet wasn’t too thrilled by the pasta dish and was kind of jealous of the leftover enchilada I had brought for me. I continue to struggle with this dinner thing. I want her to participate in the Connect dinners and she really wants me to eat with her. If I bring my own dinner then she’s going to want that instead of what Connect has made, evidenced tonight. If I bring her dinner all the time then she’s somewhat disconnected from Connect. I think I’ll stick to eating when I get home for now.
After dinner we got a Skype call into Andrew and I was pleasantly surprised at how well Janet spoke to him. She had been pretty quiet and gurgley before that but turned it on nicely for Andrew. We listened to some music after that as I tried to find some she could sing along to. She was all over a couple of Brian McKnight songs and very readily agreed with me that she likes muscley black guys that can sing. I’m OK with that as I tan pretty good in the summer so I just need to work on the singing part and I’ll be fine.
Lights out at 8:30 for a tired but content Janet. The chat with Andrew and the singing before bed really seemed to brighten her spirits and I think set her up for a good nights rest. Praying for an active day of learning tomorrow.
A rare morning start for me today as I wanted to be sure we were able to Skype Cam for his birthday. Janet was finishing her after breakfast bio break and was quite cheery about it all when I arrived. This is the first time in a while I have seen her early in the morning and was impressed with how bright she was and how well she was talking. Garrett said that was typical. I was also impressed with how straight she stood up in the Arjo type machine that Garrett was transferring her with. All she needed was skis and poles and away she’d go. We ended up Skypeing Cam from a slightly noisy gym but Janet managed to sing happy birthday to him. Even after about four perfect practice runs she still called him Andrew when it came time for the real thing but she is no longer singing Karaoke style. It’s all her.
Janet’s workout was actually pretty good including a real strong effort on the Shuttle. Janet set a personal best doing seventeen reps with one band with her right leg only. She got good extension most of the time and was visibly working hard. First time I’ve seen the effort in the face. A very welcomed sign. By the time we were done in the gym it was lunchtime and Janet ate well as expected after a good workout. I took her to the laundry room after lunch to transfer her clothes from the washer to the drier. She very confidently did that chore then we got ready for our appointments downtown.
The meeting went well but ended sooner than I thought it might so we had time to use up before our next appointment. We spent that time talking about Invue and looking at it from a block away. I used that time to check Janet’s vision a little. She for sure could see vehicles approaching us and crossing in front of us. She could see Invue and commented that there was a lot of big windows but couldn’t zero in on details like the large concrete pole running through all the west side balconies nor could she see the light pole kitty corner to us. I think this is all associated with her processing challenges and not an inability to actually see something. When we finally got into the building Janet had no recollection of having been there before but still said it’s pretty nice and she would like to live there. With the help of Courtney’s boyfriend, Mike, we are putting forward two proposed changes to the balcony door to the Strata Council. If they say no then we forget about Invue as it would not be fair to Janet to not be able to access her own balcony by herself.
Because Janet did so well in the gym this morning I allowed her to come home for dinner when usually she would be back in the gym for another workout. We had a little snack as we had been out for a while and we really had no clue what to get for a snack while out. Laurel got in on a Skype call and I had to keep coaching Janet through it as she was getting pretty tired. So much so that by the time I served dinner I thought she was going to fall asleep in it. After a few mouthfuls she seemed to gain enough energy to make it through the rest of the evening. As I was getting her ready for her after dinner bio break I could tell she was really full and when I got her onto the bed she commented, “are you OK with girls that eat too much?” The only proper answer was to laugh. I made sure we headed back to Connect in good time as I want Janet well rested for the weekend coming up. The drive back was the most fun one yet as Janet asked to listen to the XM channel that plays all these old sappy love songs. I placated her but asked her if she thought there was a channel that played songs you could sing along to easily. She immediately started singing to the song that was playing and continued for four or five more. They were all familiar songs of course but she still surprised me with her knowledge of the words and melody. I always hated the thought of family sing songs on car rides but this one made me smile.
Praying for a night of rest and healing, and an active day of recovery tomorrow.
Our steak fajita dinner went well with Janet eating two fajitas in a surprisingly neat fashion. She didn’t hurry through the meal at all and with the exception of trying to dip her tater tot into the bowl of shredded cheese she displayed some very nice table etiquette. Overall she seemed very bright and with it tonight, asking really good questions, helping to get ready for dinner and to clean up as well as keeping our annoying dog entertained and out of my way. Janet chose ice cream for dessert and when I asked her why she keeps choosing pralines and cream all the time she said ” I like the flavor and it tastes good and I like the name”. Solid answer.
There really wasn’t much time for anything other than dinner so once it was cleaned up we made our way back to Connect. Connie was there and congratulated Janet on the success of her swallow X- ray. She wanted to explain to Janet what had happened and what it all means but Janet kinda wasn’t tuned in as she had heard it all from me already and it was approaching nine o’clock which is past her usual bedtime. Once tucked in I could tell she was very much ready for sleep so I said goodnight with the promise of seeing her in the morning with Laurel. That brought a smile to her face as she closed her eyes.
Today was a milestone day for sure. We are grateful to Connie for pushing things along so well at KGH. The next target is the peg tube and I’ve set a goal of two weeks to get rid of that thing. Praying that Janet has a restful night that brings a day of learning, recovery and fun.
Janet was happily eating a bowl of what looked like soup to me when I arrived at Connect this afternoon. Turns out it was actually chicken pot pie, or at least it used to be. Hopefully we are nearing the end of the pureed diet. Mary Lou dropped by the table and gave a very positive report on Janet’s Speech session for the day. They have been working towards getting Janet to turn up the volume and part of that process is being able to string at least five words together on one breath. Janet is now doing that and Mary Lou is quite happy with her progress. Mary Lou was standing and talking to us on Janet’s right and I noticed a couple of times that Janet turned her head way to the right to look at Mary Lou. I have noticed Janet more aware of things on the right side lately but have not seen that extreme of a turn before and asked Mary Lou if she is noticing more right side awareness and she said yes. Good news. Janet seems to be responding well to Mary Lou and I think she’s got a good program in place for her. Once Janet was finished her “soup” I took her for a bathroom break before our meeting with Brian and team. The bathroom breaks have been going well lately, Lorne even took her for a successful one this morning.
Brian led us through the first of what will hopefully be a bimonthly team meeting. Janet’s ABI Coordinator, Terri was there along with Lorne and Jen, the house manager. It was a good chance to get to know each other a little, especially for Terri as we had only spoken on the phone previously. She won’t be as directly involved as Cathryn was during Janet’s stay at KGH but once we get closer to Janet moving home then Terri will become the key player. One priority for this meeting was to come up with a rough schedule for Janet’s day. That schedule will be built around meal times and a quiet time in the afternoon. We know that Janet likely will not sleep and will not want to go to bed during that time so Jen came up with a good idea of putting a lazy boy type chair in the living room and having Janet chill in it from two ish to three ish each day. Worth a try. We also agreed to let Janet try and sleep at night with no rails on her bed. Connect will procure a couple of fall mats and once in place the experiment will begin. I’m confident HouDieno will exit the bed at least once but I believe she is more aware of her surroundings now and will learn from any such fall. Janet says she doesn’t remember any of her previous escapes but accepts her nickname for what it’s worth. I can understand Connect being nervous about doing this but I really don’t see how else Janet will progress if we don’t give her the chance. There are a few things to discuss with Tez before finalizing Janet’s schedule and hopefully we can do that before the weekend. Brian says he has feelers out for a music therapist for Janet and has a couple nibbles. I’m really hopeful we can get something going that way as I believe Janet will respond very well to it. Today’s meeting was a good foundation builder and I am confident Janet has a good team looking after her.
After another successful bathroom break I took Janet to the gym for a good leg stretch and some work on the Shuttle. She set a personal best today going for thirty two reps at two bands of tension, then six reps with three bands and thirteen reps with one band using her right leg only. High five! She required a fair bit of encouragement during the routine as she keeps saying things like “it doesn’t matter” and “so what” when given the reason for doing something. I’m confident these responses are coming from a lack of confidence place rather than an unwillingness to get better place. She managed a big smile after doing the thirty two reps as I reminded her she only did sixteen the last time.
Dinner was fun tonight as Janet reluctantly chowed down on pureed Spaghetti and all the guys were BBQ’ing steaks and Leanne was making baked potatoes for them. The chatter was good and that helped Janet plow through her mush. We played a game of Chutes and Ladders before bed and Janet won easily. She had a lot of trouble spinning for her turn no matter where I placed the spinner. She said she could see it fine but couldn’t make her hand do it. I noticed a few times today that she was trying to get her right hand involved in things and she did try and lift it to spin a couple times. I want to think this is a sign of something coming back to her right arm but won’t go there yet. She asked if I would read some Slow Dance to her in bed and four pages into it she was snoring. It really is an interesting book, she was just played out from a busy day.
Praying for rest and healing tonight, a good workout in the morning and a bright and ready to swallow strong Janet for the afternoon.
Houdieno was at it again last night. This time she got out through the gap in the rails on the right side of the bed around 10:30. Bob found her and Janet thought the whole thing was pretty funny. When I asked about it today she tried telling me why she did it but I couldn’t understand what she was saying. Brian and I chatted about it and agreed that blockading her in even more is not the answer. We need to find out why she wants to get out and help her from there.
Lorne gave me a run down on Janet’s morning saying they let her sleep in till nine as she didn’t sleep very well last night. After breakfast Garret took her to the gym for some stretching and Lorne did some speech with her before Mary Lou happened by for another session with Janet.
It was a pretty busy first half of the day and that trend continued after I arrived. Damian was with Janet when I got to her room. He works with Dr. Miller and will be monitoring Janet’s cognitive and psychological improvements. I was able to have a good talk with him to give him a clear understanding of where Janet is now. We then headed off to the gym with Tez and Bob for a video recording session. The stretches Tez wants the staff to do with Janet are all recorded into a folder on the gym computer so each staff member can watch before working with Janet so they are all doing the same thing.
Tez really worked Janet’s right arm and shoulder and found significant improvement since her seizures and said sometimes seizures can actually change things for the better. Janet cried a couple of times but hung in there really well. When Tez was done his part he coached Bob through each stretch and I recorded the video. We moved on to Janet’s legs after that and found them to be unchanged so Tez decided to try and get Janet onto her tummy so he could stretch her hamstring better. With Janet doing most of the work, we got her onto her tummy surprisingly easily and she tolerated being there for a good fifteen minutes undergoing some really good hamstring work. Janet was doing so well that Tez decided to go for a big finish. From her tummy and with Bob holding the back of her knees, Tez and I lifted her to a kneeling position supported only by her left hand on my shoulder. We all were so impressed with her and I think she was too as when I asked her to look up at me she did so and started crying. She said she wasn’t hurting or anything and I think they were tears of joy. After a few minutes on her knees it was an easy flip and she was sitting on the side of the bed and feeling pretty good after a tough workout.
Deserving of a rest Janet chose to hang out in the living room watching TLC for an hour then having a late dinner. We stayed in the living room to eat while watching some basketball. Janet really was watching the tv I noticed and answered a lot of my questions correctly as to what was happening both in the TLC programs and the game. At one point I was in the kitchen talking to Bob when Clint motioned for me to come back to the living room. I saw Janet 80% out of her wheelchair and 20% onto the couch. I stood her up as straight as I could and she “took a step” towards to couch. I was holding most of her weight but she moved her left leg in a definite walking move and dragged her right one behind heading for the couch. It made me feel really confident she will walk one day and I told her so. Bob agrees and said we are still really early in all of this and Janet will improve a lot. She was so into the basketball game that she didn’t want to go for her shower until it was over. Nicole was working for the first time with Janet tonight so I helped get Janet ready for the shower which allowed me to see just how well she tolerates that task. The room is nice and warm and the shower chair is very comfy. No wonder she comes away smiling unlike at KGH.
Janet agreed it was a really good day for her and promised to get a good nights sleep in bed, not on the floor and she even told me she could push the button for help if needed. Good signs. Praying for rest and healing and thanking Jesus for the great day and all the great help from the Connect crew.
Janet woke up just after six tonight and slowly started to brighten up. I got a few verbal responses from her but her voice was very quiet and the words she was saying were mostly Klingon. I did get a whispered “yes” and some facial expressions to a few questions. After ten minutes of her eyes being open I sat her up on the side of the bed to see if she could tolerate that and she did well considering how groggy she was still. Janet didn’t outright say so but I got a strong indication she wanted to go back to Connect so I asked the nurses to change her and we got her dressed. Janet put up with the tossing and turning required for all that to happen and before you knew it her I V was unhooked and I lifted her into a wheelchair. The nurses kept an eye on her while I retrieved the car then wheeled Janet out to it. She helped me get into and out of the wheelchair by putting her left arm over my shoulder. That’s a good sign to me.
The car ride back to Connect was slow and steady as the roads were a little slippery but not as bad as yesterday. Janet was visibly happy to be back and gave the gang a little smile when we walked in on their poker night. I wheeled her straight to her room and Dani got a tube feed going for her. Hopefully that’s just for tonight. With Janet tucked in, I laid beside her for an hour till she fell asleep and I expect a good nights rest and a strong day of recovery tomorrow.
I’m very appreciative of the staff at KGH and Connect as their response and action today could not have been better. Janet’s nurse most of the day was a young guy named Chris who was working his first day in the hospital. After a bit of a nervous start he did a great job. Thanks again to Kiko! So nice to come home to a fed dog and a shoveled driveway. You are amazing!
Praying for rest and healing tonight and strong recovery tomorrow. Thanking Jesus for continuing to place the right people into our lives at the right time.