Whew! What a day. The warmest day of the year so far and a perfect day for Janet to try sailing. I met her and the others at the yacht club this morning expecting to watch her for an hour or so then take her with me to run some errands but I actually got to go on the boat with her! I really enjoyed it despite the calm conditions, Janet enjoyed sitting in the sun but that was about all. I may try and convince her to go again as it’s an awesome way to spend a sunny morning.
Wes and Janet sailing along.
Cool Connect Crew and cool Matt.
From there we went to have Janet’s dress for the wedding hemmed. It was quite the production as we had to get Janet into the dress and shoes, have the expert pin where the dress should hang to then get her regular clothes back on. I don’t know how you women put up with stuff like that. We did a little shopping since we were out and enjoyed lunch in the sun at Janet’s request. By the time we got home she was exhausted and went for an almost three hour nap!
I was getting worried she’d never wake up as the clock moved closer to departure time for Heidi’s house but Janet finally woke up just before 5. All I could think of the last hour of her sleep was her Dilantin levels being out of whack and what sort of impact that is having on her. Janet’s doctor was not in today so I had made the decision to hold back a third of her dosage again tonight then get her levels tested tomorrow. When Janet woke up she seemed refreshed but was really warm and her left eye seemed a little relaxed compared to the right one. By the time she was dressed and had a glass of water she seemed fine. Praying for resolution to this tomorrow.
Heidi had all of her SheLife ladies over to her house for dinner tonight and I dropped Janet off there then went to work at the church. This is the first time I’ve left Janet somewhere far away from me and for an extended period of time. I know all the ladies would take good care of her and they did. Janet said she enjoyed the evening but everyone helped her a little too much. This marks the end of SheLife until September. It’s been a true blessing for Janet.
Curtis surprised us with a reduced dosage of Dilantin when we got to Connect. Apparently Janet’s doctor ordered the change and the pharmacy delivered it tonight. That is a bit of a relief knowing the doctor is aware and took action so I will hold off on testing until I hear from her. On the car ride to Connect Janet was able to tell me about her evening quite accurately and with good but a little quiet speech. I feel better about the situation tonight and pray she has a good night of sleep and an energetic and bright day tomorrow.
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.
I let Janet sleep in today knowing she wouldn’t likely have time for a nap this afternoon. She was quite happy to snooze a little longer in the sun from when she woke up just after eight. Breakfast was nice and relaxed but we somehow ended up being a little rushed to get to KGH for swimming. The pool sessions were good today with Janet having more control of her right leg than on Thursday. That allowed her to do some decent “walking”, making it about one and a half lengths of the pool with assistance. Her floating wasn’t quite as good today but she allowed me to get her face underwater briefly a couple times and she didn’t panic at all. The confidence is growing. I noticed a big difference in her flexibility compared to the hot tub even though there’s only two degrees difference in temperature. Janet felt pretty good about her pool sessions today but says she liked the hot tub better because it’s warmer.
Before we left the house this morning we made sandwiches for lunch as we only had a half hour between swimming and the dentist. We sat in the car near the beach and enjoyed those then made our way to Creekside Dental. Janet was a little apprehensive about this appointment and was starting to fade a little but Collette, Tannis and Colin treated her like royalty and she stayed awake and cooperated very well the whole hour she was in the chair. The cavities she had before getting sick are still there unfortunately so she has to go back a couple more times over the next month or so to have those filled in. Colin assured me he didn’t see anything going on in Janet’s mouth that would indicate side effects from Dilantin and I was happy to hear that. With her new toothbrush and floss in hand we drove off to Connect.
By the time we arrived at Connect it was happy hour so we sat out in the sun while Janet ate an apple and drank some water. I think I was pretty good about not nagging her to drink today and pointed out the benefit of having the fluoride treatment at the dentist where you aren’t allowed to drink for half an hour afterwards. She was please I couldn’t nag her then. Janet ate her apple quickly giving us time to walk down the street to a little beach on Wood Lake. That walk and beach are not nearly as nice as around KGH but it’s what we have this summer and I am glad we have something. All those trips to the beach last summer were nice but I was never sure how much Janet was getting out of them. Today her face lit right up when we got to the beach and she constantly was looking around at all there was to see. She even followed and smiled at a couple of noisy Canada geese that flew by maybe twenty meters away from us. We watched a couple of boats that were playing on the lake and she agreed it looked like fun. Time to see if I can get her in and out of one so we can give it a try!
With dinner done the next event was the usual argument about going to the gym. Janet capitulated eventually on the condition that I go too. Bob joined us and worked Janet’s legs while I did her right shoulder and arm. We both noticed nice improvements and Janet didn’t mind the workout at all. She wanted me to read some Slow Dance with her before bed and we had a good discussion about what we’d read afterwards with Janet remembering one of the topics we had read about. Considering the lack of a nap and the busyness of the day Janet did very well to stay up until nine but was happy to say goodnight. Praying for lots of rest and healing and a good day with a more regular routine tomorrow.
While bathed in the morning sun I woke Janet up around 8:30 this morning so we didn’t have to rush through breakfast before going to church. It has been well over a week since Janet’s last BM and with no action overnight I decided I’d really try and get her more physically active today in hopes that would get her going. With that in mind I had her do as much of her morning routine herself as possible. That included a few standing attempts with her pulling up or pushing down her pants. She excelled at that again today. As Janet finished her breakfast she turned to me and asked, “if it’s OK with you I’d like to go to the bathroom?” How could I say no? That turned into her most successful bathroom trip in over a week and I gave her a standing ovation. Not even sure if I gave my kids one back in the day so Janet’s pretty special.
The morning success paved the way for a positive and enjoyable Sunday. There was singing and laughing at Trinity with Tim’s talk being on sex and Janet thinking that was pretty funny. I finally got her to sign her passport renewal form so after church we went to the dreaded mall to get some pictures taken. It wasn’t that hard for Janet not to smile for the camera but it was super hard for her to control her blinking. Thank goodness for digital cameras. She did a great job and took the best passport picture I’ve ever seen. We stayed there for lunch then went home for a really good stretch and a nap. I got both of Janet’s legs the straightest I can remember after working them for a good twenty minutes. The left leg especially still seems quite tight but once you get it going a bit it loosens right up. Janet didn’t argue about her nap today but did say that she doesn’t sleep during her naps or snore. I told her I would record some video of her sleeping and snoring during this nap if she would believe me then. She agreed, fell asleep for two hours but only snored a couple times so no video. Next time, and it’ll get Keeked.
Janet was such a big help with dinner yesterday I wanted to make something today she could help out with as well. Cinco de Mayo is coming up and we were discussing what to do for it and decided to warm up for it by making enchiladas. Janet chopped an onion, opened cans, poured, stirred and scooped and was very willing to help in anyway she could. Cooking this way is actually becoming fun and I hope we can keep it that way. You can see her scooping with a smile on her face on Keek, @larrylatour.
After dinner we watched a little basketball and halftime came just at the right time for a quick stretch. This one wasn’t as good as Janet was getting tired so I took it easy on her wanting our evening to be fun. She had a little problem with the Dilantin tonight in that I neglected to get her to drink a lot of water after taking the pills. I thought since we were sitting watching TV she’d sip on her Fresca enough to get them all the way down. Wasn’t the case and she started complaining her throat hurt. Turned out to be nothing more Fresca and a little ice cream couldn’t cure then it was a bowl of popcorn and The Voice before bed. Janet actually called her own bedtime tonight. The Voice ended about 9:40 and she started wheeling away mumbling something that turned out to mean she was ready for sleep.
Praying that Janet has a restful night that brings lots more healing to her legs and right arm and provides her with energy and strength for tomorrow.
Garrett and Lorne had Janet in the gym when I arrived at Connect this morning. Garrett was stretching her legs and asking her the name that family member questions. Janet was mostly laughing and calling everyone Allison. Apparently she had done well earlier with those questions and had a really good workout. She was pretty tired as we headed off to the pool at KGH and I was a little concerned as to how much energy she’d have for swimming. Once in the water she was fine. Each time we go is very different and today Janet really excelled at floating on her back. There were a couple of moments where I was balancing her right side with just one finger and letting go briefly and she would float. Trouble is as soon as she realized I wasn’t holding her she’d panic a little and sink. She was much more aware of her body in the water today and took some strong steps when we tried walking. Janet didn’t have the stamina to go the full length of the pool today but managed more than half a couple times. Her right leg was swinging pretty freely today and she didn’t seem as able to control it as last time. During our second half hour, where we had the pool to ourselves, I put a weight on her right ankle and that seemed to help a little when walking but made no difference in any of the standing exercises. For the most part I focused on trying to let Janet get more comfortable in the water and figure out for herself what she needs to do to stay afloat. I think we made some progress.
On our way out of Rehab we had a nice chat with Cathryn, Janet’s former ABI Coordinator. I also got a quick question in with Dr. McCann who happened by. I asked if the reappearance of the occasional incident of clonus in Janet’s right leg was a good sign or a bad one. He said it’s not likely anything to worry about but keep and eye on it. So far it is occasional and Janet laughs when it happens and says it doesn’t hurt.
We got home for lunch and Janet helped make herself a wrap then asked to look at pictures of “our” trip to California in 2001. We had talked about Disneyland the other day and she remembered me telling her she’d been there with me, my parents and my kids before we got married. She couldn’t remember the trip at all but remembered to ask to see the pictures. High five! There are no digital photos that I could find of the trip but we do have a DVD that has a few shots of Cam and a glimpse of Janet’s head and Laurel as well. I’ll have to dig around to find some prints to show her as she didn’t remember anything from the video as it’s ninety nine percent my kids. Little did I know then.
Janet was pretty tired as we drove to the doctor’s office as there wasn’t enough time for a nap today. We had a good chat with her doctor who promised to find out what the deal is with getting in to see the neurologist. Janet’s Dilantin levels are a little higher than last time but nicely in the therapeutic range and I believe these numbers are more accurate than previous as Janet is taking the capsules now instead of the liquid, a much more accurate dose. I told the doctor that it’s still a battle getting Janet to drink water and she advised not to make it a big issue. As long as Janet is peeing frequently and the volume seems fine leave it at that. There are more important things to get Janet doing. Good advice.
Dinner was ready when we got to Connect and Janet was hanging in there pretty well after a few minutes of shut eye in the car. We went to Music Night after dinner to listen to Brian and Kevin play guitar and sing. Janet really enjoyed singing along to some of the songs and said “it was more fun than I thought it would be”. There’s a video on Keek. @larrylatour . She asked to read for a little before bed then did a really good job with her nighttime routine. I thought we’d go out on our usual happy note but Janet got all upset about not having had a BM for a while and getting some help with that in the morning. No matter what I said she just got super upset and she was really over tired by this time. I ended up laying in bed with her for a good half an hour before she calmed down and went to sleep. Some of the things she said during this meltdown were old Janet things for sure and I haven’t seen them since this started. Not sure if it’s good or bad but gives me another reason to chat with the neuro psych team soon.
Praying for a peaceful sleep tonight and a bright day tomorrow.
We all know how much easier it is to get up when it’s sunny outside and it was interesting to see how that played on Janet this morning. She wasn’t too excited about getting up and let me shower so she could lay in bed a while longer and enjoy the sun shining on her. If it had been cloudy I’m sure she would have gone back to sleep. With the new swimming time we were able to have a more leisurely breakfast and even make sandwiches to eat in the car for lunch so we could get to Connect at a decent time for her nap this afternoon.
Today was the first day of the official one hour pool sessions and I checked the list as soon as we got to the pool to make sure Janet`s name was there. It was, then Jess arrived and into the water we went. Because we had so much time I was able to let Janet get totally warm and relaxed before doing any real exercises. That seemed to work well for her as when I did ask her to kick her legs she was getting two or three toes out of the water on her left foot. She had done that before but not consistently and not first thing like that either. We tried “walking” with me in front balancing her and she made it an entire length of the pool! I’m guessing twenty feet. Janet was all concentration as she stepped with her left leg then mostly dragged the right one along. She did put a little weight on that right leg and later on got it going more during some standing exercises. Jess lifted the pool to allow the others out and two new people in for the next session and once we were back in the water I let Janet warm up again but this time I intentionally held her as little as possible. The more I let go the more she started using her arm and legs to stay afloat and at one point I only had one finger under her right shoulder preventing her from listing. That’s the closest she’s been to floating on her own. I did let her go completely a little while late but she panicked as soon as her face went under. Work in progress. During the second session she completed another length of the pool “walking” and did some strong standing exercises.
The drive to Connect after swimming was pleasant with the sunroof open and sandwiches being eaten. We had one stop to make along the way and that was to the lab to get her Dilantin levels checked. We’ll get the results at a doctor’s appointment Thursday and hopefully get an idea of when we can see the neurologist.
Janet was very much ready for a nap as we arrived at Connect later than I had hoped but she managed a decent rest before happy hour in the sun. Dinner went well but Janet had a meltdown over drinking water and was the most defiant with me she’s been. It only lasted fifteen minutes or so and she ended up drinking enough water but was not happy about it. Bob took her to the gym this evening and surprisingly there was no protest about that other than a little complaint that Bob “doesn’t know what he’s doing”. I assured her it would be just a leg stretching routine and made sure Bob understood that. Janet and Bob returned with news of a good workout and Janet even said “it wasn’t terrible”.
There was more evidence of short term memory gain as we chatted with Andrew on Skype. When asked about the weekend Janet explained that it was our anniversary and we went out and she got something. She was still unable to fill in the details but the main points were there without prompting. She did get some detail correct as she talked about swimming today. I prompted her to say what her main achievement was in the pool today and Janet responded without hesitation, “my main achievement was walking the whole way…”. She was confused as to how to say length of the pool so came up with a few weird variations but she knew what she was talking about and accepted my praise better this time too.
As the day wore on I noticed changes in Janet’s speech, almost as though her tongue got swollen. She remained bright and responsive but as she tired, a little Klingon appeared from time to time so it will be interesting to see what the Dilantin levels are and I’m curious as to how hydration affects that drug and it’s side effects. There may be more reason for Janet to drink lots of water. Just a thought.
Praying for a restful night that provides lots of energy for an active and fun day tomorrow.
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.