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.
Even Janet was upset this afternoon as I arrived to find her sitting in the living room saying “I’m trying to have a nap”. She knew she was supposed to be napping before I said anything and that’s a really good sign. Why she wasn’t, I don’t know as all the staff were in a meeting and I never saw the day shift folks at all. We need to develop a strategy that gets Janet some afternoon rest without me being there to put her to bed. We especially need to at least put her in lounging mode if she’s going to be sitting in the living room. She was not again today and because I was unable to see the daytime crew I have no idea how her morning went.
We had a lot happening starting with a visit from Courtney so I gave Janet a choice of trying to power through or have a power nap before things got started, she said it’s probably best to have a nap. I laid her down and left her for forty five minutes and when I returned she was awake but I think she slept a little. We made our way down to the living room and Courtney arrived to a big smile from Janet. Just before our scheduled Skype chat with Leslie a little while later, Connie stopped by wanting to observe Janet taking her meds with only water to see if she can do it. Of course she can and Janet also demonstrated her prowess at drinking with a straw. Those accomplishments mean Janet no longer has restrictions on her diet other than to not be alone when eating and to watch the amount of food she puts in her mouth. Connie spent over half an hour with Janet catching up on things then Brian came by to chat about the new wheelchair. I’m pretty happy with it and Janet seems to be as well. We will try a few minor adjustments over the next week or so then probably buy one. I think we get a choice of colors! At one point during this impromptu meeting we had Connie, Brian, Garrett, Courtney and Chris all visiting Janet at the same time. What a celeb. Chris was more visiting Courtney as he swims at the rec centre pool that Courtney guards at and has been hoping to meet her for a long time. Unfortunately because of all that we missed the chat with Leslie but at least there will be more to talk about when we do connect. Once all the commotion ended we were able to have a more private chat with Courtney and she gave us the official word that she and Mike are getting married this summer. When Courtney told me she was coming out to talk to us I asked Janet what she thought she wanted and she said “she’s getting married”. Such a mom. We are excited about this news and if we still have our house in August look forward to hosting a small ceremony there.
The dinner menu tonight included BBQ steak and Garrett coached Janet through putting some spices and BBQ sauce on hers. He then took her out to the BBQ and had her grill her own steak. She did amazingly well and the steak turned out perfect. There’s a video of Janet flipping at the grill on Keek if you interested. @larrylatour
The flipping didn’t end after the steak as Janet totally flipped out about going to the gym. She was tired from not napping but I didn’t think she was that tired. I tried every motivational tact I could without success and finally just turned her over to Garrett and said see you in a bit. Other than being tired I can’t explain the tantrum Janet had tonight. She never gives any constructive reason for not wanting to go to the gym and gets herself so worked up it just drains her. By the time Garrett took her she had calmed down and ended up doing a good full workout and sneaking up on me all happy upon her return. One common thread in our discussions is she doesn’t give herself much credit for achieving anything and thinks the stuff she can do is “no big deal”. I think it’s time for a chat with the neuropsych team.
I read some of Slow Dance to Janet before bed and even through her yawns she managed a laugh and some acknowledgements of similarities to her situation. She even was still coming up with well thought out comments and statements in between her bouts of Klingon which started to appear as she grew more tired. She was quite confused during teeth brushing time and was virtually asleep before I could turn the lights out. Tomorrow may be a repeat of today as there will not be time for an afternoon nap between swimming and a doctor appointment. It is music night at Connect tomorrow so if Janet does well in the pool and is tired like tonight I may let her skip the gym. Don’t tell her that.
Praying for lots of rest tonight and lots of energy tomorrow.
Janet had been to the gym and was pretty much ready to go to the pool as I arrived at Connect this morning. I asked her what we were about to do and she couldn’t come up with the answer on her own but Jess said she got it during her morning routine. As we drove to KGH I sensed Janet’s energy level being a little low but she said she was fine.
The pool session went well with some good kicking and good standing. The “walking” was not as good this time and I really think one reason it was so good on Monday was Janet was in the water for an hour so was nice and warm and loose. Pool man Jim is away on vacation so I asked his relief, Jess (yes another one) if there were any people doing one hour sessions and could Janet join them. Turns out there is one person going for an hour at noon on Monday’s with the second half being just him in the water. Janet will join in starting Monday and we’ll go back to back sessions on Thursdays at noon as well. I’m excited about this as I think the pool is helping Janet a lot. I just hope pool lady Jess is on the ball and we can actually do this.
The City finally opened up the parking at Strathcona Beach to the public after holding it exclusively for Interior Health employees all winter. We parked there today so we could walk from swimming to singing. Stephani had Janet doing some cool things today including playing a hand chime which I thought had an amazing tone. Very pure and fun to make. Janet seemed to really enjoy that and I saw the concentration on her face as she tried chiming in on beat. You can see a little video of her playing by following me on Keek or Twitter, @larrylatour. She also played a shaker for one song. Her singing wasn’t the loudest ever but you could tell she was enjoying it all. Because of the change in the swimming schedule we’ll have to find another time for Stephani to do her thing but will try and fit it in somewhere as I think there is some benefit for Janet with more to come over time.
We decided to go home for a quick lunch which never turns out to be that quick. You’d think soup and a hot dog would be fast to make and eat and I guess a little over an hour from start to finish isn’t bad but it was 3:30 by the time Janet was done. That meant no nap as I wanted her back at Connect for a stretch before dinner. When she caught on to that idea she protested loudly and vigorously to the point of crying and being quite negative about it all. She thought she was spinning a good story in her favour but all she came up with was “I don’t like any of it”. I put the outburst down to her being tired and she slept a little as we drove back to Connect. To help her settle in I had her put away her laundry and help make the bed then Curtis came in with her dinner time meds. We had a good chat and Janet seemed to start to catch her second wind. Garrett joined us for a few minutes and got Janet laughing. When they left I asked her if she wanted to do dinner then gym or gym then dinner. She said dinner first so off we went. Janet made a sharp left out of her room and I reminded her the kitchen is right. She asked why I mentioned the kitchen so I told her she said she wanted to do dinner first. She sternly told me “no, I’m going to the gym now” and off she wheeled. I went down and told Curtis and he caught up to her and put her through a good workout.
Janet returned all smiley and bright and hungry, finishing off dinner with an orange in the living room with Chris and me followed by some jelly beans that were happily shared around. I was very impressed with how long Janet lasted today without a nap or her noontime dose of Ritalin. Today was the first day without that and she tolerated it with no problems that I saw but one day, especially today, is not a fair test. I’m not going to promote the lack of a nap either but it’s nice to know she can push through if needed. Bedtime came at a more reasonable 8:45 with no complaints from Janet at all.
Praying for a good night of rest with lots of energy for tomorrow and a continued building of Janet’s strength.
Brian was kind enough to drive Janet in from Connect for her appointment with Dr. McCann at KGH today. I met them there and we had time for a walk in the sunshine before seeing the doctor. Janet said some things looked familiar to her but not the beach that we spent so much time at last year. She was still happy to be there today though and agreed it was a beautiful day.
Our visit with Dr. McCann was really good, Brian sat in with us and Dr. McCann allowed me to ask a lot of questions while he was preparing to stab Janet. He was surprised to learn that he had prescribed a low dose of Baclofen for Janet way back in the 4B days but doesn’t want to change it now so we can accurately monitor the effect of the Botox. Makes sense. He feels it’s a good time to try and wean Janet off the Ritalin and ordered her noontime dose discontinued for the next month and we’ll see how Janet manages. I think she’ll be fine. My concerns about the Dilantin were supported with the caveat that until Janet has gone seizure free for six months you shouldn’t take her off the drug. He said someone may do it after three months but I think that’s too risky and will keep hoping we can see the neurologist soon for his opinion. Dr. McCann concurred with my concern about the side effects and agreed Dr. Adams would know more.
Janet was understandably tense as she lay waiting for the “little pokes” from the Botox needles and she squeezed my hand as tight as ever as Dr. McCann used four needles on each leg. She recovered quickly and was laughing with us on the way out as Dr. McCann suggested she would soon be able to kick him as payback for what he’d done. We should start seeing results in a couple of weeks with the peak effect occurring in about a month. Dr. McCann will see Janet then to assess the situation.
I gave Janet the option of going out for lunch or going home, she chose home as she was just too drained to do anything else. Once there she had a good little play time with Nash then helped make thin crust pizzas for lunch. She spread the sauce on both and put all the toppings on including slicing the grape tomatoes with the most precision yet. She’s still a little weak on the cheese grating part so I’ll have to do some research on how to help her with that. Janet continues to gain confidence in the kitchen.
There was no argument at all about nap time today. I just wish it could have happened sooner as it wasn’t until after 2:30 that she could lay down and she had to be up just after four for a Skype chat with her mom then get back to Connect for dinner. The sleep did her well and the Skype chat went well with Janet giving surprisingly good answers to a few questions. We were impressed to learn that Keith has bought an iPad and look forward to an improved Skype experience and other cool things in the near future.
Curtis had Janet’s dinner waiting for her when we got to Connect and she devoured it then very obediently went to the gym with him after digesting for a little while. Curtis spent over an hour with her and ran her through every routine possible including standing at the stripper pole. On the second attempt he let go of Janet completely to show her she was doing it all on her own. She smiled. Hopefully this is the start of an improved attitude towards the gym and I made sure to point out that her standing transfers to the toilet were not good at home today but quite good after her workout in the gym. For once she didn’t roll her eyes or snicker. Starting to believe maybe?
After enjoying the last of her Easter chocolate we tried making a little video using an app I learned about today called Keek. It let’s you shoot thirtyfive second videos on your phone and Tweet them instantly from the app. I will be using this to do any breaking news stories on Janet and or a fun highlight of the day type of thing. I couldn’t get Janet to say all her lines for tonight’s installment so I posted it with her laughing for about fifteen seconds as that’s what she did everytime it was her turn to talk. It was a great way to end a very positive day. If you want to see the video and all the future ones please follow me on Twitter @larrylatour. You’ll also need the Keek app which you can get here.
Thanking Jesus for a productive and positive day and for the good people that are on Janet’s team. Praying for lots of rest tonight and maximum effect from the Botox.