We are now another weekend closer to Janet coming home full time. There were not a lot of direct attempts at reaching the three goals she has left to achieve but Janet participated in many activities that helped her. Each day there was lots of walking, both freestyle and with me pulling her along. The cane was not used once all weekend and the wheelchair was used only for some long outside walks we took. Each day saw Janet do a 200 meter walk with today’s effort clocking her best time by thirty seconds. I’ve been pulling her along on these to try and get as close to the speed she needs to go but we’re still taking just over eight minutes to complete the route. Janet is still too scared to go any faster. Inside, Janet is showing signs of being less scared. She loves to cling onto whatever she can reach but hesitates much less now when approaching an open area and she has to let go of something. The confidence and stamina are building in the kitchen as Janet stood and helped there a lot this weekend. She’s also learning to get herself into better position before attempting a task. Previously she would start doing something the second she could reach it instead of getting herself strong and stable. Janet practiced her reading every day and continues to read faster and with more expression.
Friday night was the re start of our Small Group and we had a really interesting discussion with our three guests and Janet participated well and is looking forward to keeping this going on a regular basis. During our walk on Saturday we ran into a few of our neighbours along the way and had some interesting chats with them. Janet is getting to know more people around here and is liking them too. One of her KGH Rehab Pool partners was at Trinity Saturday night and spent some time reminiscing with Janet but she doesn’t remember much from those days. Tonight we enjoyed a yummy dinner and good conversation with Randy and Claudette, and Henrik and Sandi whom we haven’t connected with for a long time. Janet agreed it was a fun and interesting evening. All in all it was a fairly social weekend.
There were many positives for Janet this weekend, encouragement from others, recognizing improvement in herself and socially functioning at her highest level since this all started. Janet will still have long moments of silence where I wonder if she’s tuned in or not then she’ll contribute in a way that shows very clearly she’s been paying close attention and processing well too. Fun and encouraging to see.
Praying for a good night of sleep and an energetic and confident Monday.
Jess brought Janet in to KGH for her appointment with Dr. Miller this morning and I met them there. Janet is always pretty upbeat about seeing Dr. Miller as she knows its just for a chat and she always receives lots of positive feedback. This morning was no different and I could see Janet openly seeking Dr. Miller’s approval on things and truly valuing his opinion. I can’t think of anyone else she gives that much credibility to. Jess and I encouraged Janet to walk into the office at the start of the meeting and she did the last ten feet freestyle which won her praise from Dr. Miller, but he rightly pointed out that Janet’s cognitive gains are more impressive and carry more weight in the long term. I knew that but needed to hear it again. Janet participated well in the discussion and agreed to speak at a gathering of Rehab staff that Dr. Miller will organize as he believes strongly in staff being able to see the results of their work long term. This idea came about from Janet’s SheLife speech and my prompting that we feel its important Janet share her story. To put Dr. Miller’s theory to the test he encouraged Janet to seek out some staff that worked with her on her way out this morning. Thankfully there were a lot of them around and no seeking was necessary, in fact once Janet was spotted, they were doing the seeking. Each encounter was filled with surprise (Janet was walking through the ward) and excitement and Janet felt good about it all, she even demonstrated her freestyle walking to Moira who came out from her lunch break to see Janet. A very positive morning.
As soon as I got to Connect this afternoon I sought out Tez to have a look at Janet’s painful right foot. He didn’t notice any structural issues and suggests it could be from the increase in walking and using muscles that haven’t been used in a long time. To rule out the new shoes he told Janet to stop wearing them for a couple days. We will keep monitoring this.
Janet had her Dilantin levels checked again this morning and this time they are well above therapeutic range and I expected a phone call from her doctor but didn’t get one so I made an executive decision to reduce her dosage by one third tonight and hopefully talk to the doctor tomorrow. I asked Dr. Miller if he would nudge the neurologist to respond to our enquiry on this topic and he said he would.
The pain in her foot didn’t stop Janet from doing some good walking tonight along with a decent Shuttle workout and Standing Frame session. She really enjoyed the dinner Chelsea made and very reluctantly walked up to Games Night and put in a fine performance there. He “favourite” game is one where the group is asked what they’d pack for a vacation to a certain destination. Each person has to repeat what the person or persons ahead of them said then add what they’d bring without duplicating anything. Janet does best with the sunny destinations of course.
Sleep came seconds after I started reading to Janet tonight which is good because she needs to be up a little early to go sailing tomorrow. She of course is not at all excited but I think its worth a try. Praying for a good night of rest, for Janet’s Dilantin levels to stabilize and the pain in her right foot to stop. We are also praying tonight for Janet’s step dad who is in hospital in Collingwood and for Willie, a resident at Connect who is having some heart issues tonight, his 65th birthday.
Janet slept so well last night I had to wake her up this morning so we could enjoy breakfast and not be rushed to get to the pool. She seemed bright and energetic and was ready for action once in the water. My goal for her today was to get more confident in the water and to gain more spacial awareness. After warming and loosening up I tried to get her floating on her own and she almost made it and I think that if she can gain control of her right leg she’d be there. That right leg was her biggest impediment today by far as it was doing it’s own thing most of the time. Quite the mystery to me as every day is different and every hour can be different. Last night she couldn’t move her right leg to save her life, while getting dressed this morning she moved it almost as well as her left leg. Janet is as aware of not being able to get that leg to do what she wants it to do as she is her right arm and for the most part handles that awareness very well. Hopefully she keeps trying to get them both to work. The session continued with some walking and standing exercises with Janet trying very hard to accomplish both. During our second half hour I focused on the walking and standing and Janet stood on her own for about three seconds a couple of times. Again, that right leg prevented her from doing better but she quickly learned how to save herself from falling to the right and even got herself to fall towards me a few times and she doesn’t seem as afraid of getting her face in the water as previous. I’m hopeful I can get her standing on her own soon.
We made our usual exit through the Rehab Unit and had a nice chat with Nicole, a Speech Therapist that worked with Janet while she was in rehab. Nicole was so surprised to hear Janet speaking so clearly. That visit was a nice confidence booster for Janet even though she didn’t really remember Nicole. I noticed Dr. Jones at the nurses station and went in to tell him someone wanted to see him. He immediately put a huge smile on his face and headed out to see Janet who flashed him the biggest smile of recognition I’ve seen her give anybody. She remembered Dr. Jones and he was totally thrilled to see her. Had I known the reunion was going to be that dramatic I would have had the camera rolling. Dr. Jones is very impressed by the progress Janet has made and said she’s come farther faster than he thought she would. Amen.
Seems everywhere we go these days someone knows Janet and as expected at the passport office we saw Todd, a super guy that has done a lot of landscaping work for us. Janet wasn’t sure who I was talking about going in but recognized him as soon as she saw him. Janet still says no when I ask her if she wants to say hi to someone but when she actual does it she is very happy so I’m not going to ask anymore.
There was time for a short nap before dinner at Connect then time for a quick stretch before a Skype chat with Andrew. The stretching seemed to give Janet a little energy boost and enable her to have a decent conversation with Andrew. She was pretty much ready for bed then but asked if I would read a little Slow Dance to her first. Once again lots of similarities to Janet’s experience and she is more accepting of them now too. Her bedtime routine went really well, no significant confusion, and she was happy to wrap up in the blankets and call it a day. Praying for lots of rest and healing tonight so that Janet is prepared for an active day tomorrow.
What an exciting day! I knew today had potential and I couldn’t be more happy with how Janet was from start to finish. It wasn’t all ups but there were enough of them to make this a stellar day and judging by the big grin on Janet’s face as I said goodnight she is satisfied with what she did too.
I arrived in time to get her ready to go to KGH Rehab for her session in the pool. She was waiting for me in the living room with a big smile and I could sense she was a little nervous about the swimming thing. Excited but nervous. She took a while on the toilet before we left so instead of being all pool ready underneath her clothes we would have to get changed there. I should have expected the next delays as the hallway to the pool goes right by the rehab gym so Moira and Rob both came running over as soon as they saw Janet and the reunion was on. Janet kept saying she didn’t remember any of the area or the hospital as we approached but as soon as she saw Moira her face lit right up as it did for Rob. I think that gave her a nice confidence boost for the task at hand and she didn’t seem nervous about the pool at all after that. Moira guided us to a bathroom we could change in but it was locked then I remembered one in the other hall so we went there and donned the swimming attire. There are change rooms in the pool area but the only private one was in use and pool guy, Jim, was nowhere to be seen. He saw fit to chastise me for using the washroom we did and told me to make sure we stay in the pool area to change afterwards. He seemed nice when we talked on the phone but after encountering him in person today I think he’s a bored man that needs to find something more challenging to do. I transferred Janet into a waterproof wheelchair and we walked out onto what would become the water. There’s a biblical joke there somewhere. Anyone? Jim gave us a small inner tube so Janet could float and then lowered the floor. Janet started floating long before the floor maxed out and it was very exciting to see. She was smiling and laughing at the sensation and was very relaxed and “at home” the whole time.
I only knew what Tez wanted me to do with Janet as far as exercise goes and Jim just said “float around, get used to it”. Janet was used to it in two minutes so I had her try kicking her legs. That was tough at first especially as her right leg was drifting over her left one which was bent back at the knee quite dramatically. The more time we spent in the pool the more Janet loosened up and for the last ten minutes she was kicking and propelling herself through the water. She instinctively started using her left arm to paddle as well and looked totally at home doing it. I tried standing with Janet a few times. Each attempt was better than the previous and involved her touching bottom with her left foot and me guiding her right to where I could step on both feet and hold her down. I then straightened her lower back slowly and could feel her hips and pelvis move in a way I’d not noticed before. Everything felt more relaxed and Janet said she felt good, no pain.
Our thirty minute session was over super fast and Jim showed us the correct change room to use. Janet was cold as soon as we were out of the pool so good thing I brought her large beach towel to wrap her in. On our way out we went through rehab and stopped at the nurses station where a gaggle of nurses marveled at how good Janet looks. One nurse who worked with Janet on 4b actually started crying when Janet smiled and loudly said hi to her. Awesome moment.
The pool experience deserved a reward and Janet agreed ” it would be nice” to go out for lunch so we went to Original Joe’s and had a very civilized long lunch date. That cut into Janet’s nap time which she protested all the way into bed but was snoring three minutes later. Unfortunately I had to wake her forty five minutes after so we could get to her doctor’s appointment. We made some minor changes to the Dilantin dosage, capsule form instead of liquid, and she has sent a referral into the neurologist. The constipation issue has obviously been resolved but I asked her to instruct us as to how much fluid Janet should be drinking in a day. She pointedly said to Janet, one cup before and after each meal at least. Try to get two more in there somewhere but at least those. I hope hearing it from her doctor will help motivate Janet a little more.
It was just us for dinner by the time we got back to Connect but Garrett and Bob hung around to chat a little then Jess and her little niece came by to encourage Janet to come up to ladies night. Bad timing today but hopefully next week. Janet happily put her laundry away and helped me make her bed after watching a little March Madness. She very contentedly lay down in bed a little earlier than the last few nights after a busy and fun day. This was the Janet of three weeks ago that had Mary Lou all excited about her speech potential. I think as long as the Dilantin levels don’t rise Janet has a good chance of really advancing from here. Praying for a good nights rest and an equally bright and energetic day tomorrow.
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.
After shoveling my way out of our driveway and avoiding all the stupid people on the highway I arrived at Connect just as Janet was returning from the gym with Marlisa. She complained that her arm hurt and that she cried during their stretching session but she was telling me all this with a smile on her face so I played it down and Marlisa didn’t seem too concerned. I then got Janet ready for the trip to the doctor with plans to go home after that as there was nothing planned for her at Connect and I didn’t want to be on the road if I didn’t have to be.
We made it to the doctor’s office right on time and waited just long enough for the snow to melt off of Janet’s wheelchair onto the office floor. That’s what they get for doing a crappy shoveling job. Our chat with Dr. Wiese was pleasant and she complimented Janet a lot on how good she looks and how well she’s done so far in her recovery. The doctor did seem to be up to speed on Janet’s situation and did not hesitate to order the swallowing X-ray and wants to see Janet once a month now to keep tabs on her. Janet said to me afterwards that she had no idea that was the doctor she just talked to but she was nice. That’s all that matters I guess.
At home it was lunchtime and Janet had a nice big bowl of tomato soup. Seemed to suit the day well. I also let her have some crackers and cheese just to keep the rebelliousness going. I went out and shoveled more snow after lunch and Janet spent that time exploring the house and getting herself stuck in our bedroom doorway. She thought it was pretty funny and couldn’t tell me why she had even gone down there as she said she was cold but it’s way colder in our room than the family room where I left her. She played with Nash for the rest of the time I was shoveling then we played the Sesame Street Memory game. Actually we played our own version of it as there was some setting up to do so I had Janet match all the character cards as we detached them from their holders. She did really well with everything on her left and struggled a lot with anything to the right.
A little later on we played a game of Spelling Bee Bingo and Janet beat me easily even yelling out BINGO when she got her last letter. I cued her but it was still cute. Joel and Kiko stopped by for a visit complete with a very yummy casserole and massive dessert. It was nice to sit and chat with them in our home as opposed to a hospital room. I just wish we could get Janet talking louder and more.
Janet ate another rather huge dinner and I carried her out to the car for the ride back to Connect. Praying for a restful and healing night 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.
Janet surprised me this morning by greeting me with a huge smile as she sat in the living room at Connect watching CNN. She said she had a good breakfast and was having a good morning so far. In anticipation of the appearance of Tez the Physio Therapist, we headed down to her room and had a little chat and played a math game on the iPad. Janet impressed me with her recognition of patterns and grouping from smallest to largest. I realized we forgot to weigh Janet yesterday so I asked Garrett if we could do that. Janet has gained again so I think it’s safe to say we are done with tube feeds. Next step is to get her drinking water well enough to get rid of the peg tube altogether.
Mary Lou dropped by to see if Janet had any time for a little Speech session. I left them at Janet’s newly installed desk and chair and when I returned a half hour later they both had big smiles on their faces and gave an encore performance of a vocal exercise they had just done. Janet was nice and loud and clear and was very much enjoying the singing aspect of this session. I will try and get music therapy man in soon as Mary Lou thinks that would be really good for Janet.
It was clear by this time that Tez was not going to appear before lunch so we headed to the kitchen and I blended and heated some vegetable soup for Janet. It was actually pretty good and she ate all but a few spoons full. We got word that Tez would appear between 1:30 and 2:00 so we hung out in Janet’s room for a while reading and talking. To speed the arrival of Tez I put Janet on the toilet and like magic he appeared. All I had heard about Tez before was he was an Aussie. Usually I know what that means and I was looking forward to ribbing him about being the last therapist to see Janet and being late today etc. He’s not your stereotypical Aussie and although I think I will eventually be able to give him the gears today was not the day as he was all business.
As the lone PT at Connect it is Tez’s job to create programs for all the residents there. This afternoon was his chance to see what Janet can do and can’t do and figure out what to work on to help her recover the most physically. He came in with pretty much a blank slate, not relying on Janet’s chart and only using a few key things that Moira had passed on to him. Since Janet had just gotten out of the bathroom and was sitting on the edge of the bed it was the perfect opportunity to watch her transfer using the sliding board. We then went down to the gym with Garret and Lorne in tow and Janet transferred onto the table mat. Tez talked to her for quite awhile about what she felt she could do, what she liked to do prior, what she wanted to be able to do and about a wide range of other things. I was very impressed with Janet’s responses to his questions and her engagement in the conversation. I only had to correct her a couple times and elaborate on a few things otherwise she handled it all remarkable well. It was then time for the let’s see what you can do test and after a thorough workout, sometimes painful, Tez said “your going to be fun to work with” and “I usually put together a program pretty quick for people but I’m going to give yours some long thought”. He seems truly intrigued by Janet’s case and I think sees quite a bit of potential for her. His short term goals are to protect the functionality she has now and start building strength in her legs and arms. Long term will be discussed at the coaches meeting next Thursday but likely will be similar to Brian’s. Independent transfers and walking short distances, maybe some use of that right arm. It was a very interesting session and a tough workout for Janet at times but she realizes the importance of it and I think will respond well to whatever program Tez comes up with.
We finished in the gym just after three and I decided to bring Janet home for the rest of the day. She enjoyed playing with Nash again and is getting really good at telling him what she wants him to do. He is learning to put the ball on the floor where she can reach it so they actually can have some decent play time. We sat by the fire and watch the start of the Fiesta Bowl and Janet remembered she was cheering for the Oregon Ducks as soon as I reminded her of their nickname. Dinner was a bowl of pasta and meat sauce which Janet ate with gusto. Ice cream followed and then after helping me fold laundry she had another dessert, one of Laurel’s Turtle Squares.
Bob and Chris were watching the game in the living room when we got back to Connect and Janet wanted to stay and watch with them for a bit. We stayed until the end of the third quarter then got ready for bed. Another busy day for Janet and I asked her to recap it for me before I said goodnight. She was able to tell me most of what she did in chronological order with a few names different than reality. Breakfast was lunch, our home was Ontario and her room was Bolivia. That’s still the best recap I’ve had from her and she is no longer giving the automatic “terrible”, or “nothing” answer to my questions. Nice.
Praying for a restful night and a productive day tomorrow.