I mentioned a while ago that I would stop posting blog updates on days when Janet was home and even though she’s been starting her weekends on Thursdays for quite a bit, I kept on blogging. Well, this is the last one of those and once Janet is home full time the daily updates will cease. Every once in a while there is something cool worth sharing but it certainly isn’t every day any longer.
Janet had a good stretching session in the gym with Curtis this morning then I picked her up for the weekend and we hung out at home with my mom who baked up a storm and made the place smell real nice. After Janet’s nap she helped make dinner again and amongst other things is showing an increased ability to stand for long periods. She moved around the house well without her cane and enjoyed just chilling in her comfy home.
We have a busy weekend full of figure skating ahead of us as we attend the Skate Canada International competition. Janet will not have a chance for a nap all weekend so a sleep in is planned for tomorrow. Since my mom is here I’ve told Janet she can stay home until Monday evening and she is very excited about that.
Praying that Janet sleeps well each night this weekend and has the energy to keep up with all we have planned.
All day long Janet’s focus was on getting things done so she could watch the Seahawks play on Monday Night Football. Tez has a new student working with him whose worked with Janet on her stretching a couple of times now. She says he’s nice but isn’t totally sure of what he’s doing. Janet is more than willing to tolerate that as long as she doesn’t have to work too hard. Things seem to be getting done though, including some walking. After her nap I took Janet for a walk up the stairs and on the six minute course. There was a lot of complaining that ended with some acceptance of a good result. With me pulling her along, Janet did 200 meters in just under seven minutes. That’s the fastest yet but was with help and on an inside course. Still, it may boost her confidence a little.
After setting the table and grating a bunch of cheese Janet sat down for an enjoyable Skype chat with Andrew. Janet had a fair bit to say once she warmed up and really enjoyed getting caught up on Andrew news. Dinner was in the living room so we could watch the game and that of course made up the rest of the evening. Love having a football fan for a wife.
Praying for a restful night of sleep and lots of confidence for tomorrow’s activities.
Janet must’ve known it was Monday as she was in no hurry to get up this morning which normally would be OK but we had an appointment before swimming today so up she had to get. Her right leg on the other hand stayed asleep most of the day. In the pool it was doing its own thing most of the time despite a real effort from Janet. She did manage some good balancing and floating and over all both pool sessions were worth the trip. Even more worth the trip was a reunion with nurse R J as we passed by the Rehab nurses station. He was very excited to see Janet and could not believe she was talking to him. He was as excited as a little kid on Christmas morning and Janet thought the whole thing quite funny.
Unsure of what to do for lunch and with Janet announcing she had to go to the bathroom once we were in the car, I decided to take her home for the bathroom break and a quick lunch. I really need to stop referring to meals as quick with Janet as they never are. It was three o’clock by the time we were done and Janet was clearly getting quite tired. She would have nothing to do with the idea of a nap either at Connect or home but I offered to lay down with her and she accepted that. Asleep within five minutes and still sleeping at 4:30 I called Connect to say we’d be back after dinner. When she woke up after five Janet was refreshed and totally up for a hot tub. That warm water worked its magic on Janet again as I was able to get excellent stretches on both legs and some good work on her right arm and shoulder. With the cooler air temperature and the fact we weren’t in the overheated pool before going to the hot tub we were both able to stay in longer than yesterday and Janet was very relaxed when we got out. Her right leg seemed a little more responsive towards the end of the session and while doing some squats I could feel that leg working a little. Janet later executed some really strong standing transfers that I think even she was happy with.
No longer rushing to get back to Connect we had a good Skype chat with Andrew then a decent dinner before making the half hour drive to Lake Country. Bob had a good basketball game on when we got there so we stayed up too late and watched that but Janet wasn’t really that tired until the end. Regulation time ended at around 9:15 or so and I tried to fool her saying the game was over but she knew it was going into overtime and so she got to watch the whole thing.
Lots of time in the water today, a fun reunion with R J, a nice chat with Andrew and an extended stay at home made for a fun day for Janet. Praying for a good night of sleep and healing and a productive day tomorrow.
Now that Janet’s had her legs Botoxed her visits to the gym are even more important than before and are more frequent too. Tez coached the Connect staff through Janet’s routine for the next month and it amounts to almost constant hamstring stretching. Ideally four visits a day to the gym, a couple of which will just be twenty minute leg stretches but still a trip to the gym. Today, Janet put up the usual verbal argument against going but went calmly each time and performed well. I think the increased activity is showing results already as her standing transfers were two hundred percent better today than they were on the weekend. She seems physically stronger and mentally more confident as well.
Brian walked me and the staff through the features of Janet’s new wheelchair this afternoon with the most notable improvement other than the color being the “lounging” function. As you can see here,
Janet can sit with her legs up in this chair which allows for a hamstring stretch while she’s chilling watching TV or something. When I first put her in that mode tonight she said it felt “stupid”. She accepted it soon enough and spent over an hour that way before going to the gym with Garrett and Kari before bed. That workout ended up being more thorough than I expected but Janet wasn’t complaining at all. She couldn’t really complain to me at first anyways as I hid on her when I heard her coming back. Garrett was asking her family type questions and Janet was responding nice and loud and clear. I stood behind her as Garrett ran her through a lot of who’s who type questions and Janet did her best to find the right answers. She for sure knows everyone but has a hard time pulling the names out without some cues. When given the family picture she did very well at pointing to and naming most everyone in it and knew that Ashley is the one missing from the photo. That made me feel a little better about her vision but not as much as her next move. I stayed hidden behind her until Garrett and Kari left then Janet started looking for me and when she turned her head way to the left she “saw you out of the corner of my eye”. Nice to hear she can do that.
I had a lot to do today and didn’t get to Connect until three. Janet was resting when I got there and I started getting her up just before four. She had two gym sessions between then and bedtime, which is getting later and later it seems, but my time with her was still limited today. I can say that it was a good day for her with lots of activity, definite physical improvements, a funky new wheelchair and lots of laughs. Tomorrow is very busy so I am praying for a restful night that renews her strength and energy.
With the idea of trying to figure out why Janet complained of a sore throat the last two nights after taking her Dilantin, I stopped by for a chat with her doctor before going out to Connect today. Without seeing Janet and being able to examine her throat it’s hard to say for sure what’s going on but based on the fact Janet seems fine the rest of the time and is not bothered by trying to swallow any food or drink her doctor suggested trying to flush the capsules down with a good portion of water. When I reminded her how hard it is to get Janet to drink anything she suggested yogurt or something like that. Depending on what the capsules are coated with it is possible they would cause some irritation if not completely swallowed. The doctor was surprised to hear that the neurologist has not contacted me yet and will follow up on that as she feels it’s important Janet sees him soon.
Janet had just finished her sing along session with John and was having a bio break when I arrived. She smiled then started crying complaining that “I don’t belong here, there’s no way I’m going to go”. Realizing she was talking about going to the bathroom I told her it’s a good thing to try before nap time and I walked over to her desk and back. By the time I got back she was peeing and laughing about it. She was having a good day so far. Jess said she showered well and toileted well this morning then had a really good workout in the gym. Janet said it was fun singing with John, even singing the Titanic song. Glad I wasn’t there for that one. I had to lay down with her for a few minutes until she fell asleep then I went to talk to nurse Jen and Tez.
I filled Jen in on the sore throat thing and she agreed the water and yogurt would be good things to try. Tez was pleased with my report on Janet’s pool experiences and will come with us next Thursday to see for himself and give me some pointers on how to improve the routine. He says it’s important to work on the big things like kicking and floating and standing as opposed to little things like range of motion stuff. Just prior to speaking with Tez I got a surprise call from Dr. McCann’s office. There is a spot open next week where he could Botox Janet’s legs! I am still in the process of trying to reduce our Pharmacare premiums so I was worried that if we did the Botox now we might be paying too much if Pharmacare changes in our favor. I asked Tez for his opinion and he feels that although there is no guarantee Botox will work for Janet the window of opportunity for having success with it is closing so the sooner the better. Her actual appointment is July 10th and that is too long to wait by passing up next week’s chance. I called Pharmacare and they said they would reimburse any difference after the review of my application is complete. So Janet will go next Tuesday for another round of Botox in her legs and then the focus of her PT routines will be on stretching them as much as possible.
After her nap I told her the good news about the Botox and she immediately started to cry. Seems she remembers all the needles that treatment requires and does not want to go through that again. It took about a half hour to get her calmed down enough to have the scheduled Skype chat with her mom. Mary/Gaga was a big help in giving Janet a sense of relief about the Botox and as the evening wore on I had Janet share the positive news with everyone she saw so as to build it up as a good thing. By dinner time she could talk about it without crying.
Setting the table and helping to make mushroom gravy built Janet’s confidence tonight and her and Garrett seasoned a chicken for roasting tomorrow as well. That kept her focused for half an hour and feeling useful. Maybe she was too confident as both Garrett and I failed to convince her to go to the gym tonight. She caught on to the fact that if she agreed to play poker she wouldn’t have to go to the gym so that’s what she chose to do. And a good call it was. Janet has no clue how to play the game and with all the chatter going on around the table and a new dealer who didn’t really know what she was doing it was not the night to try and learn. But it was fun as I helped her along. Each time she won a hand she got a massive smile on her face and by the end of the night it was down to her and Brandon left in the game with Janet holding at least twice as many chips as him. Because of the time we agreed to play one hand all in and Brandon won so he got to chose from the prize box but Janet couldn’t have cared less as she was still playing with the colorful chips. She helped me put them away and I think she enjoyed stacking them in separate colors as much as she did playing the game. That was a fun and different experience for her.
With water and yogurt ready I gave Janet her Dilantin before she started her nightime routine thinking the longer before she lays down the better too. There were no problems tonight at all. She took the capsules first try each time and drank a good amount of water along with a few spoons full of yogurt. No complaints or coughing or anything.
Praying for a restful night and an active day tomorrow.
Janet was hard at work in the gym when I arrived this afternoon. This was Simon’s first day working with her and he was getting some good results. Garrett had Janet in the gym in the morning to do a good stretching routine and now she was back for a more active workout session. Simon had her doing some leg exercises then Tez came in and helped get Janet onto her tummy for a hamstring stretch and some more on command leg movements. Then came the big test. Yesterday Tez had Janet kneeling on her own a little bit so he was going to try that again. With Garrett watching her back, Tez lifted Janet to a sort of push up position on her way to kneeling. We noticed how strongly Janet was pushing with her left arm so Tez decided to try and have her do a push up. The tears started immediately and Tez let her down a little and Janet responded by pushing part way up. You couldn’t call it a push up but there was an effort there for sure. On her knees the tears were still flowing as they would for the rest of the workout. Undeterred and knowing the tears were a lack of confidence rather than pain, Tez and Garrett gradually let go of Janet until she was kneeling completely on her own. She was able to lift her head and straighten her back so she was up nice and tall. Very impressive and according to Tez, much improved over yesterday. Simon held out some colored pieces of paper an arms length away from Janet and she was able to reach out, grab them and pass them off to me on her left side. Major high five! She cried each time she did it but again, not from pain. At least that’s what she told us. Finally sitting on the edge of the table mat, Janet could relax a little. But not for long. I had told Tez I was doing mainly standing transfers with Janet and he wanted to see her stand as he was surprised to hear she was “stepping” with her left leg. Considering how tired Janet was she stood really well with me, impressing Tez enough that he pulled out a couple of scales and placed them under each of her feet and asked her to stand again to see how much weight she was carrying herself. The left leg registered about forty five pounds and the right leg not quite half that. Pretty darn good and more than Tez thought she could do. One final task for Janet was to transfer herself from the table mat to her wheelchair using the sliding board. Janet didn’t understand how to get onto the board but once she was there it was an easy slide onto the chair. Visibly relieved, her gym day was over and she wheeled her way out and left me chatting with Simon and Tez.
I found Janet in her room ready for a bio break. Success. Our before dinner activity was reading a card and looking at some photos that Gillian had sent us as a thank you from her wedding. Janet surprised me by reading a fair number of the hand written words in the card and a little of the inscriptions on the backs of the photos. When she first started reading I noticed she was only reading the first two or three words on each line so I had her follow along with her finger and she was able to go seven or eight words before losing focus. She did a good job of identifying people in the photos, even Gillian’s husband Josh, whom she’s never met. There’s that improved short term memory again.
Dinner was a fail tonight. Beef stew which I knew would be a challenge and I tried to convince her she liked all the ingredients. No go. I rescued her with half a peanut butter sandwich and a bowl of pears. She is looking forward to making pizza at home tomorrow.
Back in her room it was time for a birthday Skype with Laurel. Janet very loudly and clearly sang Happy Birthday to her right off the top of the call and carried on a good conversation for almost half an hour. Janet is no longer rambling on about nothing. When she does ramble it’s because she is stuck on a word and she is clearly trying really hard to say something constructive. She is even getting mad at herself a little now when she can’t find the right word. So far it is all with a smile on her face. Speaking of smiles, there was another noticeable improvement today. Since very near the beginning of all this I have been randomly trying to tickle Janet, notably at her armpits where she used to be quite sensitive. Up until this evening I had gotten no response. Someone taught Janet to raise her left arm when she is coughing to help her cough bigger. She was doing that tonight and I tried to tickle her and got an immediate pull away reaction with her telling me “stop that, it…” she couldn’t find the word but agreed with tickles. Not sure of the significance but I’m taking it as a positive.
Janet did most of her bedtime prep herself and before I was half way through our prayer I felt her hand relax and she was asleep. Quite the day. Janet is showing signs of improvement in a lot of areas and I think gained some confidence the last couple of days. Praying for a restful and healing night and a fun day of learning before heading home for the weekend tomorrow.
So now my name is Roger according to Janet. Not sure how I got that one but the only Roger I know I like so that’s cool. Christa mentioned to me that Janet refused lunch so after our little what’s my name chat I asked her if she wanted something to eat. She proceeded to eat a whole can of beans! I’m sure she’ll be able to eat more exciting things this time next week as her swallow X-ray has been booked for Thursday. Thanks again Connie! I met with Janet’s eye doctor this morning and he agreed to do an exam with Janet on the 29th. The value of the exam will be to give her therapists an accurate account of Janet’s field of vision. It is unlikely that whatever deficiencies she has can be corrected or healed but she may gain functionality through rehab once her exact condition is known.
After her late lunch I took Janet up to get weighed. She lost a little bit this week and we had a good talk with the staff and agreed to up her meal portions a little and offer her snacks in between meals as well. One contributing factor to her loss could be the increased activity in the gym and in general. Standing takes a lot of energy and her workouts have been rather intense so I think she’s likely burning more calories now than before.
Janet struggled a little with putting away her laundry today but did a great job of helping me make the bed. Before heading to the gym Janet took a pee break and for the first time did a standing transfer from the wheelchair to the toilet. She had to stand for quite a while as I haven’t perfected my technique for a one handed pant removal or replacement. She was very strong and worked hard to stay up long enough for me. We took Christa and Suzanne to the gym with us as they had not been trained on Janet’s routine yet. Janet was very patient and cooperative as the three of us stretched her out. Janet did very well at the stripper pole today, needing only a slight boost to get started then getting up pretty good herself after that. She still gets very emotional doing this but today she did not pee, hopefully because she went before going to the gym. Janet managed one set of thirty on the Shuttle with one band of tension and when I suggested thirty more with two bands like she did yesterday she very sternly told me no way. She had been through a lot by that then with no nap time so I relented and said we’d do more in the morning.
Dinner was more of Suzanne’s stew and we only shared the table with Chris tonight. I don’t ask the other residents what their deal is and some have offered little bits of their story but this was the first time Chris said anything other than he was in an accident. Turns out it was a motocross accident almost nine years ago. He was in a coma for seven months and has not walked until just a couple of weeks ago. The smile on his face as he told us that was really something to see and I’m glad Janet heard it first hand as that is a true story of hope. It made an impact on Janet as I included Chris in our goodnight prayer she asked me about his story again. I gave her a recap and she seemed genuinely touched and impressed.
When I asked Janet if this was a good day she said “yes and no”. She couldn’t defend her no response at all and agreed to all my yes suggestions so the final answer was a big smiley yes. Praying for rest and healing tonight and recovery and learning tomorrow.
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.