Laurel went in first this morning and Janet was awake when she arrived and was dressed but in some goofy hospital pants instead of the ones Laurel had left out for her. After a little morning chat Laurel asked Janet if she could do a little stretching with her and she said no. Laurel asked why and Janet said “because Larry always makes me”. Not sure how to interpret that one.

I arrived around 9:30 and got Janet ready for a big adventure. Laurel and I had been planning on taking her home for a visit today if she was feeling up to it. I had cleared it with the nursing team a couple days ago so it was just a matter of if Janet was bright enough and wanting to. She most definitely was. We got her loaded into the car and headed out. Janet seemed content to watch the scenery pass by as we drove along and I think a few things were recognizable along the way. I felt like she knew where we were as we approached the house and she immediately undid her seat belt as we backed into the driveway. Janet had a smile on her face the entire hour and a half we were home. I carried her up the stairs and plunked her in a family room chair. Nash was going crazy and Janet was totally focused on him for the first half hour or so, throwing his ball and watching him run up and down the hall. Seems to me that the connection with Nash is coming back stronger for Janet, Nash is happy as long as she is doing something for him. We took Janet for a tour of the house in her wheelchair and I was pleased to find that there is just enough room to maneuver it throughout the living space. I wasn’t sure how Janet would react to seeing our bedroom but when I asked her if she knew what this place was she said “this is a happy place”. That choked me up a little. We went outside onto our balcony so she could see the back yard, she said “it looks pretty good”.

Back inside we invited Barb and Gary to come and say hi to Janet. They are the best neighbors anyone could have and Janet’s smile got even bigger when she saw them.

Janet seemed to want to just hang out in the house but I thought we should take advantage of the opportunity to go for a walk so I carried her down the stairs and Laurel quickly followed with the wheelchair and with Janet driving Nash, off we went for a loop around the neighborhood. Janet was very focused on Nash again and did a pretty good job of keeping him in line. Laurel and I teased her a little by giving her a poo bag for Nash and she actually started getting it ready to pick some up. I don’t think Janet really wanted to go back to KGH yet but she understood she had to for lunch and we promised she could come home for visits more often now. I think on rainy afternoons when she has no therapy sessions or anything I’ll bring her home for a few hours.

I left Janet with Laurel for the afternoon and they plan on Skyping Heather and also Leslie and Gavin who are at Mary/Gaga’s and Keith’s so they will get to see Janet instead of just talking at her.

Thankful for the incredible progress that has been made so far and still excited to have had Janet at home.

From Laurel

Mom was sleeping when Larry and I arrived just before 8am, although she woke up as we made some noise. She seemed pretty groggy but I did get a nice little smile from her. Larry kept asking her who I was, but she was making no attempt to answer. We took a walk around the ward to give her some time to wake up, and the nurses got her cleaned up. She had a little crying spell at first, but eventually calmed herself down. Larry left a little later and Mom and I had a little visit before heading off to physio. Rob was subbing in for Moira today. He got Mom standing again using the same apparatus as yesterday (although apparently the foot block was turned the wrong way yesterday), and from my perspective she did a great job. He then worked on stretching her lower right arm out a bit more, being careful not to bother her shoulder. Rob said he would encourage us to work on extending her range with her left arm (e.g., lifting it up high to grab something), to preserve/increase its function. He often reminded Mom that she is very “elegant” so he never wants to see her start slouching. I thought elegant was a great word choice, and Mom really seemed to respond to it. Physio ended a little early so Mom and I had time for a little “chat” together before speech therapy. I asked her if she liked Rob or Moira better, and Mom said “Rob.” I was teasing her for jumping ship on Moira so quickly, and Mom responded with what I think was “I just like Rob more.” Her speech is a lot softer than I was expecting and the minimal movement of her mouth as she speaks really makes it hard to decipher her at times, but it is so nice to hear her communicating.
We went to speech therapy and Connie asked Mom who I was. She whispered “my daughter,” and when Connie asked for my name she said “Laurel.” Yay! Connie had Mom count to ten, say/whisper the days of the week and the months of the year, all without any modeling. She also went through a worksheet with some illustrations, where Connie would begin a sentence that matched the illustration and Mom had to finish the sentence off. Mom could always finish the sentence but it didn’t always match the illustration, despite making sense. She had some tears at one point, but again was able to calm down with some time.
In OT, Mom received a new wheelchair that is much lower to the ground so that she can use her leg to motor herself a round. Afterwards, she was put back in bed for lunch and her and I looked through a magazine together. I left her very yawn-y and likely in need of some rest. Looking forward for her reunion with Nash this afternoon!

When I got back this afternoon I tried once again to get Janet’s attention through the window. No go. She was awake and just finishing lunch and seemed a little out of it. I chatted with her a bit to try and get her going and she did brighten up whispering some really legible words and using some Klingon as well. She didn’t do nearly as well with family names and such mostly I think because she was just worn out.

I stretched her a little and did well with the right arm as far as straightening it but she motioned with her left arm and shook her head no way when I suggested raising it up. Legs and hips were good, then I let her try and get up herself. She did well with her upper body but couldn’t get the legs to move over so I assisted and once she was up she was a little brighter. She just landed in the wheelchair when Janet F. arrived for a visit and Janet gave her a little smile of recognition and seemed pleased to have a visitor.

The timing was great as I headed off to chat with Dr. McCann and Cathryn. I told them my first priority right now is Janet’s right shoulder and the pain she is experiencing. Dr. McCann has a couple of theories and ordered an X-ray which hopefully will show what’s really going on and then he can make a treatment decision. I said I was please with Janet’s lower body improvements but have not seen the same range of movement in the right leg that I did the first time she moved it. I asked if there was some way of improving that or is it all up to Janet. Dr. McCann says the best thing is the standing and “walking” routines she is doing in physio. Janet really does enjoy those so that’s good. Next on my list was Janet’s cognitive improvements and I listed some of the things she has said lately and how the Klingon is diminishing. Both Cathryn and Dr. McCann were pleased to hear that and it was evident that that was news to them. Glad we were chatting. I also asked for clarification on Janet’s tenure at KGH rehab. Dr. McCann gave his best educated guess that Janet will continue to recover for another four to seven months. There is no way to tell at what pace she will continue to recover or to what end she will recover. Her stay at KGH rehab depends on her rate of recovery. Once that shows a trend of slowing then the team will look at appropriate alternatives. The next serious assessment on that will be in three or four weeks. One of those alternatives could be Connect. Cathryn was downplaying Ponoka as she was seeing that more as an instead of KGH rehab option as opposed to a next step option. She explained that Connect is more of a transitional facility that works on preparing the patient for home or long term care or where ever they are going to be long term. Whereas Ponoka is an intensive rehab facility like KGH and is geared toward maximizing recovery. She feels that as long as there is potential to maximize Janet’s recovery she will remain at KGH. Connect would come into play when recovery is pretty much maxed out. She also thought Connect would be easier for me and the family and I explained this is not about me or the family and we need to be doing whatever is best for Janet and if at some point that is Ponoka then let’s take a serious look at that. It was a good discussion and I appreciate Dr. McCann taking time to sit down with me.

As I was giving Janet and Janet a little more visiting time I noticed a Porter go into Janet’s room. I followed and was told she was going for an X-ray. Wow! Forty five minutes after writing the order she was on her way. Cool. Hopefully tomorrow Dr. McCann will look at the results and decide on a treatment plan. I took advantage of the time to install some lights on my bike as I just couldn’t bare driving to and fro anymore. So boring and the parking game is ridiculous. Even if I bought a monthly pass I would not be guaranteed a spot in the afternoon. That’s dumb, so back on two wheels I go. Feels good.

Janet was not her usual chatty self the rest of the day and said she wanted to “stay here” when given the option of going for an inside walk or staying in bed. I read some of Anne 2 to her and she had her eyes closed most of the time. She was still listening though and would check with me every once in a while. I got her dinner started and since she was already dressed for bed I told her I was heading home. She patted me on the shoulder and smiled, gave me a kiss and closed her eyes at 5:30 which meant I didn’t need my new lights for my ride home. Figures. I’m pretty sure she is resting up so she can have a good day with Laurel tomorrow.

Praying for a restful and healing night, answers and solutions to the pain in her right shoulder and continued improvement in her ability to talk. Also praying for a safe flight for Laurel in the morning.

Janet was flying through the air on her way back to bed after showering this morning. She seemed to not really care what was going on which is good and means she is used to the sling transfer. I didn’t get any Klingon from her this morning but she did tell me she was tired. They get her up pretty early on shower day so that may be part of it.

The stretching routine went well with her right arm straightening out nicely. She would not let me lift it up at the shoulder at all though. Both legs and her hips seem fine to me today. After she got her meds I got her up and into the wheelchair and off to physio where she gave her first smile of the day. It came after doing ten bicep curls with a seven pound weight. High five! She brightened up even more when Moira came over and asked her if she wanted to stand up. I stayed and watched for a bit this time and am really impressed by how much Janet enjoys working with Moira and by how much she wants to stand up. This video shows one attempt to stand so you all can get an idea of what’s going on. That’s Moira in front of Janet pulling her up.

I took off after that and am looking forward to a good conversation with Cathryn and Dr. McCann this afternoon.

Janet was in her wheelchair having lunch in her room when I returned and had obviously been wheeling about a little bit as she was right at the end of her tube feed line. She had released the left side brake and managed to manoeuver the chair around quite a bit. I asked her how she was and she shook her head, I asked if she wanted to lay down and she nodded and said “yes, I want to lay down now”. I plunked her into bed and asked her if she wanted some music on, she said “you put on whatever you like”. Awesome answer. I asked her to name a bunch of people and she did fairly well but was having trouble with some so I got out the iBlackboard and wrote the names on it and asked her to say them for me. I was quite surprised that she actually did. I went through the entire family and the only ones she had trouble with are those that start or end with sounds she can’t make yet without prompting like K and G. I was really impressed she could read the names though. High five. Janet started to shut her eyes soon after that as she had not had her chance for her regular rest time earlier.

With Janet napping I went lurking to see who I could run into. Moira gave me a report on the morning physio session and she was really pleased with Janet’s performance. She had Janet standing at the end of a set of parallel bars with a belt around her pelvis attached to the bars out in front of her. Getting Janet into position was kind of like a water skiing start and then Janet would hold onto the left bar when she was up. She was also standing on a wedge that put more of her weight on the front of her feet than the heels. Janet stood up very straight, was very bright and relaxed and seemed to enjoy it. One of the other therapists was being a bit grumpy so Moira instructed Janet to give him a smile. She looked at Moira like “really” then flashed the guy the cheesiest fake smile Moira had ever seen and they both laughed out loud. Moira thinks the other therapist laughed too but it doesn’t matter. Moira will continue to focus on standing and walking with Janet and let Dr. McCann and Jessica work on her right arm and shoulder. I wasn’t able to see anyone else this time but will try and get updates in the morning.

Before Janet woke from her nap, I managed to get a message to Leah, Janet’s student nurse from 4B that had the dream about Janet talking. She was very excited to hear the news and thinks Janet is “incredible”. I told Janet and she smiled. Not sure if she remembers Leah by name but I’m sure she would if she saw her again. After a little stretch we went out for a walk. Kinda cool at the beach so we kept moving and didn’t stay out too long. Janet drove the long hallway and continues to battle The Bump. Good effort again today but not enough momentum to make it. We had a meeting with a Notary to see if we could get a Representation Agreement done as opposed to a Committeeship. No go on the first attempt but she will come back next week and thinks we can get there then. She did recommend pursuing the Committeeship as well as it allows for a broader range of authority which I could need way down the road.

After the meeting I asked Janet what she wanted to do, lay down in bed or read The Hallow-wiener. She said “I want to read The Hallow-wiener”. This is an awesome book that I had left out for Janet while I went to move the car and since it is close to Halloween I thought it appropriate. Janet enjoyed it and so did I. A little later Janet voted to “watch something” so we watched Wayne’s message on Next Gen and Janet listened intently until the interview with Sid Koop was done then she started closing her eyes. I got her ready for bed and made sure the night crew knew about the NO STOOL SOFTENER and said goodnight to a content and beautiful Janet.

Praying for a restful night and total healing of Janet’s right shoulder.

Janet was being changed as I arrived this morning and didn’t seem too happy about it. This is the third day in a row she has needed changing after getting dressed in the morning and her nurse, Robert, said he would check her chart to see if there was some clue there as to what’s going on. I’d been here before with Nicole and others with no result so I was not hopeful. Janet seemed a little listless as we started stretching and in fact closed her eyes after a few minutes of whispering to me in Klingon.

The stretching of her right arm went well and I held it straight out on the bed for a couple minutes and was able to open and close her hand quite easily. I then bent her arm back and laid her hand on her chest and lifted her pointer finger, her eyes popped open, she almost out loud said “Ow” and started to cry. When asked to show me where it hurt she went right to her right shoulder. Doesn’t make any sense to me how straightening her finger can hurt her shoulder but there is no denying it did. After she calmed down I worked on her legs and was very pleased with how that went.

I got her sitting on the edge of the bed and Janet immediately showed signs of livening up. I straightened her back for her and while I was holding her there she started whispering in Klingon again. She brightened up even more when she got into the wheelchair and as I was brushing her hair, Connie stopped by. She was all excited to tell me that Janet had written her name yesterday. Connie held her hand twice to do it and then let Janet try on her own. Using one large piece of paper for each letter she wrote her name. Nice of Connie to stop in and tell me that and Janet seemed happy to hear how well she had done. Connie asked her if she would write my name today and I took that opportunity to ask Janet my name. She hesitated then Connie asked her what my name is and Janet said in a loud whisper, “that’s Larry”. Finally!

Janet drove down to Physio and greeted Moira with a smile. Her smile got bigger as Moira complimented Janet on her new hair do. Women. I told Moira about the shoulder pain this morning and she will follow up with Dr. McCann re treatment. Today’s physio session was to involve Janet standing on a wedge. Janet seemed quite excited and ready for her workout.

As I was leaving I asked Robert if had found anything in Janet’s chart to suggest a cause for the tummy problems. Apparently she has been given a stool softener for the past few days as part of the protocol for coming off of a pain med. Another case of lack of communication as those working directly with Janet know the last thing she needs is a stool softener. That order is now off the chart. Thanks Robert.

Looking forward to an active afternoon in the sun.

I got back to find Houdieno trying to climb out of the left side of her bed with lunch still pumping into her. She gave me a laughing smile like “I know I’m not supposed to do this”. She laid back down and I tried to have her tell me what she did while I was gone. Her Klingon is getting better and she actually said “I went to Physio”. The rest of it was garbled but she was sure telling me a story. Heidi visited while I was gone and I trust that went well as Janet gave a little smile when I asked her about it.

After some minor stretching and sitting on the edge of the bed, I got her into the wheelchair and we tried calling Mary Gaga but her line was busy for at least twenty minutes so we headed out for some sunshine before Chelsea arrived to cut Janet’s hair. Chelsea met us just outside as we were soaking up some rays and Janet gave her a nice smile and a “hi Chelsea”. We went back to Janet’s room and Chelsea went to work.

I left the two of them alone for most of the time but each time I was in the room I was surprised at how Janet seemed to be really enjoying the experience. She sat nice and straight and still the whole time and smiled at me each time I came in to see how it was going. Chelsea was able to even things out a lot and says there are just two small areas that need to grow in a bit more then Janet will be able to go for the new style she had in mind before all this started. I think Chelsea did a great job today and I believe Janet does too.

On one of my ventures out during Janet’s salon time I stopped Dr. Miller in the hallway and asked him further about possible depression in Janet. He said it is likely to occur to some degree as she becomes more aware but he does not want to treat it until it is affecting her recovery. If she stops wanting to do things then he will consider treatment but fears that going that route too soon would impede her progress. So far Janet is participating well in everything she is asked to do and everyone at this morning’s meeting is in agreement that Janet is progressing and that KGH Rehab is the best place for her right now. I asked him about the three to four week timeline and he said that is totally arbitrary and as long as Janet is progressing at a reasonable rate she stays.

With Janet all cute in her new do, we made another attempt to call Mary Gaga and this time we were successful. Janet whispered “hi mom” into the phone loud enough for her mom to hear this time and that is a first. Pretty cool. Janet enjoyed listening to her mom and even gave her a kiss at the end. It was actually more like spitting on the phone but we know the intent. We had time for a little drive around the unit while we waited for Jack to visit. He met us in the hallway and Janet had quite a pleasant surprise look on her face. I know she loves Jack and his booming voice so they had a nice visit with Jack reading some of Anne 2 to her.

I asked Janet if she wanted dinner out in the dining area or in her bed, she said “in my bed”, so into bed she went and after chatting for a few minutes her eyes were starting to close. She was probably tired of me asking her my name, which she still hasn’t got by the way. I was Andrew again and Paul and Science among many Klingon names. I didn’t think she was actually going into a deep sleep so I told her I’d hang out for dinner then stretch her and get her dressed for bed. I put the Presidential Debate on the iPad and she kind of watched and kind of didn’t. Same with me so I turned it off after the first question and just curled up with her until dinner was done. Then the tears started. I had a really good stretch going on her right arm and was holding it down on the bed and she started crying. She wouldn’t or couldn’t tell me why for the longest time then all of a sudden her whispers turned into pretty much her real voice for about three or four teary Klingon words. I told her how nice it was to hear her but sorry I couldn’t understand. She stopped crying but clearly wanted to get up so with no socks or shoes on I helped her get up on the side of the bed. She was immediately happy but couldn’t tell me why. Her right leg was shaking like crazy at first but after five minutes was nice and relaxed as was the rest of her. I told her it was bedtime and she needed to lay down now and she did. I got her changed for bed and she thought I was pretty funny fumbling around like I do. This is one part of nursing I’m still not good at. We said our prayer and I said goodnight telling her “I love you”. She said “I love you too”. That’s the first time she’s done that and by adding the “too” tells me she was really saying it not just mimicking like she does with a lot of other things. She may not know my name but I don’t care.

Praying for another day of progress tomorrow.

I was surprised to find Janet still in bed at 8:30 this morning. She greeted me with a nice smile and some Klingon but seemed a little flushed and judging by her state of cleanliness was not feeling all that great. I got her nurses to clean her up and dress her and asked that the formula be reassessed as it seems to be going right through her the last couple of days.

Once Janet was up we had a little chat. She counted to ten and named the days of the week without help and she knew today was Tuesday after I told her yesterday was Monday and tomorrow is Wednesday. She knew the color of her shirt is pink and that my water bottle is red. Apparently my name is Andrew now though. She thought that was funny but she kept calling me Andrew. Pretty good start to the day. Before we knew it it was time for Physio so off we went. Moira was late as the meeting with Dr. McCann ran late. They talk about each patient in room number order and Janet is now last on the list. Moira still had time to get Janet into the sling for some “walking” around the gym. I headed home to get some yard work done.

Before I left I was able to have a brief chat with Dr. McCann. He says Janet will stay in rehab for “a few more weeks”. Best I could get out of him was three to four more then look at a facility like Connect in Lake Country. Of course if Janet is still progressing she will stay where she is. I think her rate of progress is key here as Dr. McCann said the gains she has made recently are good but they are small and a place like Connect that is geared to slower recovery times may be better for her at some point. I presume this would mean Ponoka is possible as well and I have asked Cathryn to join Dr. McCann and I for a detailed discussion on Thursday afternoon. As far as Janet’s right shoulder is concerned Dr. McCann will look into Botox or Cortizone as a possible treatment soon.

Looking forward to an active afternoon.