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.
I had an early start to the day today as I met with Janet’s GP this morning. She wanted to follow up on Janet’s seizures and increase the medication for that slightly. In my opinion Janet has rebounded very well from that day and is gaining cognitively quite well. Her doctor is confident in using Dilatin for Janet and has not experienced any real difficulties with that drug. She confirmed that she will remove the peg tube on Valentine’s Day and will talk to Janet’s GI before doing so just to make sure she does it right as this will be her first. Since Janet is eating real food now and trying to swallow her pills whole I asked if we could dump the horse pill sized multi vitamin she gets and the doc agreed. So once I check with Connie and she approves there will be no more crushing of meds for Janet. Yay! I enjoyed the chat with her doctor this morning and appreciated her calling me in to follow up on things. We will continue doing so rather than dragging Janet in when not necessary.
After doing some investigating on the condo we are looking into buying I made my way out to Connect. Janet was sitting on the couch in the living room with a big smile on her face watching TV. She seemed quite proud of herself for doing so and was in a great mood. She described her day so far as good and tried really hard to tell me she had pushed her pendant alarm for help in going to the bathroom. Garrett confirmed that she had done just that both for needing to go and when she was finished. High five! They had a reasonable workout in the gym and Garrett said he was pleased with the way her legs stretched out.
Janet and I made our way downtown for a meeting with a lawyer regarding Power of Attorney and when we informed the receptionist we were there I could see someone elses’ name in our time slot. Sure enough two minutes later that person came in. I quickly checked my calendar then the email I got from the lawyers office. Turns out my calendar app had synced a reminder from a calendar I no longer use and it appeared as an event for today when the actual meeting is tomorrow. Silly me. We used the extra time to do a little drive around downtown since we were there thinking we might see a building that looked interesting to live in. Knowing that there are few condos the size we want and most are in the complex we already looked at and didn’t like, the drive around confirmed that Invue has a lot going for it. I will take Janet there one more time before making a decision to try and buy there or not.
At home and after she played with Nash, Janet and I enjoyed a cup of tea together. Can’t remember the last time we did that. We read a letter from some family friends of Janet’s in Ontario and prepared some cards for our World Vision kids. I also showed Janet some pictures of her new found old friend Karen. Janet definitely remembers her but doesn’t recognize her yet. She gobbled down a bowl of fruit and yogurt after complaining she was hungry then I could see her getting pretty tired. It was late in the day and she had not had anything close to a rest time so I got her into bed as she complained “why are you putting me here?” Fifteen minutes later she was snoring.
I got Janet up just before Kiko and Joel arrived with a boat load of sushi for dinner. Janet had regained some energy and an appetite eating probably more sushi than she would have before getting sick. I poured some wine for Kiko and I and Janet almost immediately asked for some. I was very tempted to let her but have been told alcohol is a big no no for ABI patients. I promised her I would talk to her doctor next time we see her and also Dr. Miller. I’m sure they will say no but maybe its a soft no and a little sip here and there won’t hurt her any. I hope so as it would be really nice to enjoy some wine with Janet again. Much more fun than tea.
Janet was tucked into bed at Connect pretty late tonight, full of sushi and ice cream. Before we left the house she asked me why we were spending all that money keeping her “there” and why couldn’t she stay “here”. She got quite upset about it all but resigned herself to the situation after agreeing that working with Brian, Tez, Mary Lou and all the others was best for her right now. She asked why she only did that “in little bits”. I reminded her how tired she gets if she works out too long or plays a game too long and she totally agreed and was fine after that. Janet continues to move into a higher state of awareness and has a greater ability to express her feelings than ever before.
Today was a busy and good day for Janet. Thanks again Joel and Kiko for your friendship and food. You made our evening very enjoyable. Praying for a night of rest and healing and a productive day tomorrow.
Janet was very bright and cheery this morning when I arrived before taking her to the eye doctor. The dietician had already been and gone and Garrett reported that she had a little conversation with Janet and reviewed her chart and said all looked good, carry on. I was hoping to speak with her but maybe next time. Janet said she slept well and had a good breakfast. She knew we were going somewhere this morning but couldn’t remember where. I was encouraged by her responsiveness.
We had a good appointment with the eye doctor, spending an hour examining and chatting about Janet’s condition and he will prepare a detailed report for Connect over the next couple of days. From what I saw and from what he told me, Janet’s eyes are healthy, they are aligned almost perfectly with the left one maybe very slightly deviated but not nearly what it was a few months ago. There is a large floater in the right eye. This likely occurred at the time of the rupture or soon after and there is no treatment needed for it. Janet’s vision may or may not be affected by it and she may not even know it’s there. Janet is displaying some right side neglect and just how much will be determined when we do a vision field test next week. There was not enough time to do one today and the doctor wants Janet at her best and brightest to give the highest probability of success. Janet’s prescription is fine for now and her glasses are still good for distance as prescribed and she should not wear them for reading. With her glasses on Janet tested at 20/20 or close to it and she was able to read impressively well. As we have known for some time, she often gets stuck and repeats a word or number, she did that today a number of times during the exams and it was interesting to see the visual cues the doctor gave her to erase what she was stuck on and start fresh. Covering an eye briefly, looking up at the ceiling briefly or closing both eyes then re focusing. He would like us all to start teaching Janet some of these cues and feels she can regain a strong ability to read one day. She currently can go four to five words before stalling and that is impressive considering.
Home for a wintertime lunch of grilled cheese and tomato soup was next on the agenda followed by an afternoon nap. Yes, Janet slept for over thirty minutes this afternoon and quite deeply too. I had to wake her up so we could get back to Connect in time for a workout before dinner. We managed to Skype with Mary/Gaga before leaving and enjoyed a good conversation with her. Janet was pretty loud and was able to answer some questions about what she had been doing. I’ve noticed a real improvement in that area lately. Earlier in the day I had read an email to Janet sent to me from an elementary school friend of hers who found this blog and wanted to get in touch. Her name didn’t register with Janet when I first read it to her then when I told Mary/Gaga who very clearly remembered her, Janet’s memory kicked in as well. Her and Karen were close friends in grades five through eight and we look forward to at least virtually reinstating that friendship.
In the gym today we had only a small battle about working on the Shuttle. Janet gave in a worked hard with some good results. It helped to have Phil getting his first workout at the same time as the therapists encouraging him could be heard easily by Janet. Phil was with us at KGH Rehab and is doing really well. Glad to have him at Connect. Janet’s legs are quite tight, maybe tighter than the last time I worked with her but I still managed some pretty good range and she was able to do lots of movement in both herself. She gave two strong attempts at the stripper pole but was pretty tired so was not that successful. All of the transfers I did with her today were standing, except for the car, and she did very well with most of them.
Dinner was another beautiful Rikki creation followed by a nice warm shower, some reading of Slow Dance and a Janet initiated prayer. She was very tired and only managed “thank God for Andrew and his…” The rest was Klingon but I’m sure God understood. We prayed as always for rest, healing, restoration of the ability to walk, use of her right arm and hand, complete restoration of her vision and ability to talk loud all the time. Looking forward to a fun day of recovery tomorrow and a nice sushi dinner at home with Joel and Kiko. Thanking God for them and all the other cool people in our life.
When I arrived at Connect this afternoon Janet was cruising around the kitchen area with a family picture in her hand. She had just finished a glass of water and had been working with Garrett on identifying the people in the picture. She did pretty good the first time around but then everyone turned into Andrew and we don’t want that do we? I helped her for a little while and eventually she got everyone back to who they really are and hopefully we can stay that way. Janet was in a good mood and Garrett reported she had a pretty good day although she balked at going to the gym with him this morning and when they finally got there she made a minimal effort and refused to work on the Shuttle. I think she may have been tired from the weekend so we’ll see how she does tomorrow.
I spent a lot of time talking with Janet trying to get her to recount her day so far and what she had done over the weekend. Laurel sent a nice email to read to her and Janet actually started crying as I read it. I also read her the post from Nick Vincent that I shared earlier today and she was moved by his story. When I asked her what she thought the similarities are between his story and hers she responded with “don’t let anything stop you”. I was blown away by that answer as it came totally from her. I didn’t summarize what I had read to her or anything. She took it all in and made a connection. Brilliant!
Taking advantage of that awareness I got Janet down to the gym with the promise of a little leg stretching then a routine on the Shuttle. She was fine until she started on the Shuttle. Four reps in, the tears started. I convinced her to keep going and she made it to thirty three. Then she totally lost it, having the most demonstrative hissy fit yet. After lots of talking she finished her routine with a respectable result but I am getting a little concerned about her attitude. Every chance I got the rest of the night I reinforced how well she is doing and how important it is she keeps working hard. There were moments where she seemed to truly buy in and there were moments where I got the shoulder shrug and a bit of an eye roll. After the second successful standing transfer to the toilet she seemed to gain a little confidence and off to dinner we went.
Spaghetti sounded really boring to her and she was a little upset that that was what she was getting but ended up eating two servings of it very happily. Fluid intake was a little lower than at home mostly because she wasn’t offered anything other than water all day. The dietician is coming in tomorrow and will see Janet and hopefully me first thing so we can discuss food, drink and peg tube. Nurse Jen confirmed that as long as Janet is hydrating well the peg tube can be removed in two weeks. The staff are logging Janet’s fluid intake daily and I’m to keep track when she is away from Connect. So far so good.
The rest of our night was spent talking and reading Slow Dance. In the book they were describing an MRI experience and Janet commented that “I didn’t have anything like that”. Right she is and she seems much more aware that something has happened to her and even a little accepting of it. When I was done reading and told her it was time to get ready for bed she listed off all the things she needed to do to get ready and told me she needed help with all of them. I expected tears to follow but she just stated them matter of factily and we got started. Janet has to get up a little early tomorrow so we can get to the eye doctor so we tried to turn out the lights a little early tonight but that didn’t really happen as she was quite chatty all the way through her bedtime routine.
Praying for a restful night an informative visit to the eye doctor tomorrow and a positive, hard working Janet tomorrow.
I encourage you all to read this inspiring post written by a young man who was stabbed in the head in 2009. Thanks to his mom, Sue Vincent for sharing with me and adding your prayers for Janet.
Possum ergo facit – I can therefore I do..
via Possum ergo facit – I can therefore I do..
Another good nights sleep at home for Janet. I think she woke up once during the night, smiled at me and went right back to sleep. I slept better too knowing she was doing fine. The pillow field I laid out for her to land on seems a bit extreme now which is good and I only noticed her rolling onto her right side, which is towards me so not much fear of her falling out of bed now.
Our morning started with her usual breakfast of fruit and yogurt, coffee and a bagel with peanut butter. Everything was finished in plenty of time to go to church. We enjoyed the service and stayed after to have lunch with the Tech Team. It’s such a nice feeling to be able to have Janet out at functions like that and nice for me to re-connect with a special group of people I miss being around. For this occasion Kiko had made some pulled pork and Janet liked it so much she had seconds as well as dessert. We got home just in time to Skype with Leslie, then Andrew. Janet is conversing so much better now and her voice is getting stronger and stronger. She still will get stuck on a word or short phrase and repeat it but also manages to come up with well constructed sentences and questions and her short term memory is improving as well. She even admitted during the chat with Andrew that she was really tired and agreed to have a lay down afterwards.
I had to wake Janet up forty five minutes later so we could have dinner before returning to Connect. She ate well but didn’t seem as enthused with the dinner tonight. Too simple for her I guess. Chicken strips and fries with fresh veggies. She did love the chocolate ice cream for dessert though. Janet had a good day as far as fluid intake goes, drinking coffee, pop and water as well as a cup of tea. I have no concern about meeting that two week target for taking the peg tube out. In fact we may have to do it sooner as when we got back to Connect she complained quite tearfully that it hurt her. I had not cleaned it all weekend so it was a little dirty but it’s been worse in the past so I think I rubbed it or pushed it when I lifted her out of the car. I asked Bob to have the morning crew check it and if it’s still really bothering Janet I’ll have nurse Jen take a look. I don’t think there’s a problem, it’s more likely whatever happened getting out of the car combined with her being really tired and being a little rushed to get into bed and Laurel leaving that all that was too much for her to handle then. I called Bob after dropping Laurel at the airport and he checked on Janet for me and called back to say she was just fine. It was a busy but fun day with a steadier pace than Saturday and I think it set Janet up well for the busy week that lies ahead.
It was a big help having Laurel here this weekend and good for Janet to have quality time with her daughter. The smiles and laughter and sharing time is great therapy. We look forward to seeing Heather in a couple weeks. Praying for a well deserved night of rest and healing and a fun day of recovery and learning tomorrow.
Day two at home felt pretty hectic to me but I think it was a good one for Janet. I know she liked breakfast especially being able to enjoy a bagel and peanut butter along with an unlimited supply of coffee. Laurel kindly instructed me on how to make coffee for Janet so she doesn’t get all grumpy when we are home alone next weekend.
In preparation for John and Lisa’s wedding next weekend Laurel helped Janet find an appropriate outfit from her vast wardrobe and I was finally able to present her with the anniversary gift I got her last year which happens to accessorize her outfit quite nicely. We eventually got ready enough and headed out for a shopping expedition trying to find shirts, pants and PJs for Janet to have at home so I don’t have to pack a bag each Friday. We managed to find everything she needed including two pairs of slippers so she doesn’t have to wear her sneakers all the time and only paid retail for one item. Lunch was food court Chinese at the mall and even though it was the mall it was really nice having Janet out. We even saw Lorne from Connect there with Fred and Clint. I guess it’s the place to be.
We did a drive by of Invue on the way home so Laurel could get a glimpse and we could check the walkability of the neighborhood. From her three minute scan from outside Laurel thought it looked pretty good and Janet still remembers it being “very nice”.
Janet had a good long afternoon nap after saying she didn’t need one then enjoyed some time with Laurel while I made dinner. They got in a nice Skype chat with Heather who we are looking forward to seeing in person in two weeks. Janet impressed us by noticing that I spiced up the vegetables more than she would. They had more of a kick than she would have tolerated before but she was ok with them tonight. Dinner took way longer to prepare than I thought so we didn’t have much time afterwards but enough to watch some recorded American Idol while eating ice cream. My goal was to have Janet in bed long before 10:30 like she was last night and we barely made it by ten tonight. The good thing about that is she is asleep within minutes of being tucked in as opposed to restlessly squirming around and perhaps going into Houdieno mode and it gives me time to realize she is soundly sleeping.
Today was day one of going virtually tubeless. Connect is working with me to reach my goal of getting rid of Janet’s peg tube in two weeks. She is to drink all her fluids now with her tube being flushed with thirty ml twice a day only. Janet seems to have accepted the challenge and has really improved her water drinking. She still says she doesn’t like it but is taking bigger sips and drinking much faster overall. Yay. I also challenged her to swallow her lunchtime pill instead of me crushing it for her. She complains of the taste of the crushed meds so Laurel and I reminded her that if she swallows them whole she wouldn’t really taste them. She tried and got it down with the second sip of water. Janet has historically found it a challenge to swallow pills but was quite motivated to get this one. As soon as she is comfortable with the one little one at lunch we’ll try the three dinner ones. The horse pill at breakfast will have to wait till she reaches expert status.
Praying for a restful night of healing and an enjoyable day tomorrow.
Update from Laurel:
I was very anxious to see Mom this morning, and was happy to see her working away in the gym when I arrived at Connect with Larry. She spent a lot of time on the shuttle and on the mats, and I noticed significantly more movement out of her right leg than the last time I was here. A much looser looking right arm, as well, and a few attempts by her to use it later in the day (e.g., her left hand pulling her right hand up towards her food at lunch). After the workout I spent some time catching up with Mom in her room, and was really happy to hear a pretty loud voice and some nice involvement in conversation. According to Larry, Mom’s voice is noticeably different (in a good way) today.
After a nice lunch together and a game of Sesame Street Memory, Mom decided it would be a good time to use the recliner that had been set up in the living room for her afternoon “rest.” She wheeled out of her room and asked a staff member, “Do you have chairs for us?” – a nice attempt at trying to spontaneously communicate what she was wanting. Mom at first appeared extremely tense as she lay back in the chair (which is pretty much how she would have looked even before this all happened), but she quickly settled in and really seemed to enjoy the chair, with her eyes almost closing at times. Really nice to see the staff tailoring things so that the “rest” can be achieved despite Mom’s resistance to being in bed during the day.
Larry returned at the end of the afternoon and we all headed out for an early dinner of Thai food and a trip to UBC-O for the women’s basketball game. Mom seemed to enjoy the game, but admitted to being tired by the end of it and ready to head back to begin her weekend at home. Despite being tired, she was up for playing with Nash and enjoying some weekend junkfood and a Fresca once back at home. She continued to be chatty and had both Larry and I laughing numerous times, not heading to bed until 10pm. It continues to be amazing to watch her progress forward, and I am very excited to see what a weekend at home has in store for her.
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 and I are home for the evening and I’m sure a lot of you are interested to hear the results of her swallow X-ray so here is an update on the day so far.
Lorne took Janet to the gym after breakfast and got her on the Shuttle after some stretching. He reports that she did very well, doing thirty reps with one band and sixteen with two. She only had one melt down during the entire session and it was minor. When I arrived at 11:30 Janet was finishing making her bed and “looking for some after school type work to do”. Since we had to go soon I got her what I hoped would be her last mushy meal for lunch and she ate that quickly while we had a brief chat with Tez. I asked him about Janet being home on weekends and missing a day in the gym. He feels the different therapy experienced being away from Connect is just as valuable as being in the gym and having the weekend off would not be detrimental to her treatment. In light of that Janet will be home Friday and Saturday nights from now on. As to my concern about Janet’s leg work being done in the mornings we agreed to leave it up to the staff as to which workout they could do best with the time available. Tez feels there is no measurable difference between working the legs in the morning as opposed to the afternoon.
We raced off to KGH and despite the expected parking challenges arrived on time for Janet’s swallow X-Ray. She was in and out in twenty minutes with the Speech Pathologist (not Connie) seeming to make a real effort at qualifying Janet for as unrestricted a diet as possible. After the test she couldn’t tell me anything specific as she wanted to review the video recording and as it turns out Connie would review it as well. Janet and I visited the old gang at Rehab which brought out lots of big smiles from Janet and everyone who saw her including Moira, Cathryn, Dr. Miller, lots familiar nurses and especially our long time table mate Barb who is now walking with a cane! The visit there was very good therapy for Janet as she was reminded of how many people love and care for her.
As soon as we got home Connie called with her results from the swallow X-ray. Janet’s diet has officially been elevated to “Easy Chew, Thin Liquids”. Translated that means pretty much anything Janet wants to eat with the exception of tough meats or hard vegetables and fruit. Raw carrots was mentioned as a no no but when I told Connie how much Janet loves baby carrots she agreed to allow those and anything similar including sliced apples. The main precaution with Janet’s eating now is to ensure someone is always with her and to monitor the pace with which she eats. There is still a little bit of residue in Janet’s throat when she swallows but it’s not nearly what it was during the last X-ray and clears with a second swallow. One thing she failed at was using a straw but that’s no big deal. Connie will go to Connect tonight and give them the written instructions so that Janet can start eating real food there tomorrow. For her first authorized meal she has chosen steak fajitas which we are going to start making now.
Praising God for all the good people in our life and for the success of today so far.