An all too familiar sight greeted me at Connect this afternoon. Janet lounging in the living room with a big grin on her face. This time she very intelligently explained that she didn’t think she needed a nap so she chose to watch TV instead. This was not the usual defiant Janet or the whining tired and stubborn Janet. This was a very calm, articulate and reasonable Janet that I couldn’t get upset with. She understood that she would likely be ready for bed earlier than usual and that proved to be true.
Janet wanted out of lounging mode so after chatting with Jess to see how the day went we headed for Janet’s room but Brian was in the kitchen so we got to talk to him for a while and that took up any possibility of a power nap before our Skype chat with Mary/Gaga. Jess said Janet’s day had been busy starting with a shower then an early visit to the gym at which she was able to get really good stretches on Janet’s legs. Janet reported that singing with John was fun but she didn’t have the same sparkle in her eye about it as I’ve noticed before. Maybe just because she was tired.
While Brian was around I asked if he would watch me do a few car transfers with Janet to see if there’s any better methods than the one I’m using. He smartly invited Tez to observe as well and we spent a good half hour discussing how best to get Janet into the Santa Fe. Getting out is no problem thanks to Janet’s increased strength and her ability to “stand”. The consensus for getting in seemed to be, continue with the lifting for now but we’ll try and have Janet practicing moves that can enable her to do more herself. Long term it may mean a different car for us, one that is a little lower to the ground. Brian mentioned there is a Lexus that kneels like a bus so I checked that out but was extremely unimpressed with their website and couldn’t even find a mention of that feature. Very cool idea though.
Because of the transfer experiments we were a little late for our chat with Mary/Gaga but I think the movement and sunshine gave Janet a bit of a second wind and she was able to have a very nice chat with her mom. That took us to dinner time and Garrett had Janet BBQ a some chicken breasts for everyone. She’s really getting the hang of the BBQ thing and enjoying the challenge of cooking.
I gave her the option of going to the gym with Bob or Garrett and that seemed to prevent her from arguing about going so she wheeled off with Garrett. Janet was pretty tired by this time and was almost ready for bed when she returned at 7:30. That was too early though so we did a little research on something that was mentioned in the book Slow Dance. It’s called The Feldenkrais Method and is based on the theory that your brain can always learn new things and you can teach your body to move as it naturally wants to because over the years it’s learned to move incorrectly. The whole thing seems a little weird, like yoga for people still doing acid, but I think there’s some truth in it as well. If any of you know anything about it or have experience I’d love to hear from you.
Today was a solid day for Janet with good visits to the gym, good standing transfers(even surprising Tez when he “danced” with her), great BBQ’ing and really good communicating. I’ve stopped nagging her about drinking water and today she did quite well on her own. Looking forward to a fun day tomorrow. Praying for a restful and healing night.
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.
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.
Even with house guests Janet managed a nice sleep in this morning. Katie and Sarah took off for Calgary at 8 o’clock Connah(Katie’s last name)time which is 8:25 to the rest of us. Janet and I wish them well on their adventure.
Our morning was relaxing and stress free with Janet eating a big breakfast, Skypeing with Heather and doing a little online house hunting with me. We even managed a pretty good stretching session. During which we talked about how we could get her in and out of the pool and hot tub and I made a brief attempt at carrying Janet from her wheelchair down to the floor of our bedroom and quickly saw that there is no way I’m doing that because even if I got her down I’m not convinced I could get her back up. We read in Slow Dance where the lady was sliding out of her chair and landing on the floor butt first. Janet is not there yet and even if she was the getting back up part is still there. I’m open to suggestions y’all.
After polishing off a hamburger for lunch Janet fought me a little about going for a nap despite the fact she was falling asleep in her wheelchair. For the first time ever that I can remember Janet verbally threatened me. She said, “this will cost you a lot of money” as I was laying her down on the bed. She explained that if I loved her I would let her stay up. I got mad at her for the threat then laid beside for literally two minutes until she was sound asleep. Janet uttered another negative comment during the chat with Heather expressing her lack of confidence in her ability to stand. That one was familiar to former Janet and it could be that she is becoming more understanding of her situation. We got to keep focusing on the positives.
I woke Janet up a couple hours later and she was refreshed and recharged enough to play with Nash, drink half a glass of water then help me make dinner. We decided on linguine and clam sauce and Janet was the biggest help to me in the kitchen to date. With minimal supervision she chopped an onion, opened cans of tomatoes and clams, poured those in the pan for me. Added all the spices to the sauce, chopped peppers, tore lettuce and very casually broke snap peas in half with her thumb. She was very happy with her contribution and to celebrate we enjoyed a 2008 CedarCreek Pinot Noir which also motivated her to drink her water.
During a bio break after dinner I was having a tough time getting Janet’s pants down as she had gotten a little sweaty sitting in the sun. With no prompting she let go of my shoulder and reached down to push the left side of her pants over her hips. High five! That was a huge help and as she played it down I reinforced it as proof the visits to the gym and the stretching are paying off as she could not have done that if her legs weren’t so strong. At bedtime she did it again but in reverse as she helped pull her pants up. Very cool.
As we watched The Voice tonight Janet lounged in her wheelchair which gave a good stretch on her legs while she ate ice cream. Today was not an active day physically but I think Janet’s brain got a decent work out as did her fine motor skills. Praying for lots of rest tonight and a bright day tomorrow.
A surprise greeted me at Connect this afternoon. No Janet in the living room. Could she be napping? Lorne explained that she was laying down and had been for about an hour or so. He had to trick her into doing so by doing a few leg stretches on the bed with her then saying he had to go to the bathroom. He turned her iPod on and left the room and never went back. We think she slept a little bit and I was waiting till three thirty to get her up. At three twenty her alarm pendant went off. Lorne and I went to her room and found Janet sitting on the edge of her bed holding the pendant, crying and asking me “when did you get here?”. As in, if I was here before why didn’t I come into her room. The reason she pushed her alarm and was so upset was the alarm on her bedside clock radio had gone off and was making an annoying racket. Lorne and I both praised her for sounding the alarm and I sensed she felt good about doing it. I also thought it was good she told us clearly why she’d done it and good she wondered about me being there. Lorne reset everything and Janet calmed down. I’d heard she had two good trips to the gym already today so we headed home for the weekend.
We got home just in time for our scheduled Skype chat with Mary/Gaga. Janet and her had a good talk with Janet answering questions quite well. Kicking back with a Fresca I then had Janet open some mail, one piece of which was this picture of us on our wedding day. I mentioned in a previous post that we didn’t have one of just the two of us. Mary/Gaga did and now we do too. Thanks! I’m not sure about that look I have on my face though. Looks like I think I just got away with something. Captions anyone?
My cousin Katie and her friend Sarah were crashing at our house tonight on their way from Nanaimo to Saskatchewan and we told them they’d be able to make pizzas when they arrived. Janet chopped peppers and made her pizza as well as most of mine. I find it interesting how she places things very neatly around the edge of the pizza but puts almost nothing in the middle. Vision thing? Janet was hungry so we ate and were almost finished when the girls arrived. Janet doesn’t know Katie very well but I think she enjoyed having some chatter in the house for a while and afterwards said “they are nice girls”. The travelers crashed when Janet should have but she was determined to watch some basketball and since it was a close game I let her. It really was more a case of not wanting to go to bed yet as opposed to watching the game although she is improving at being able to tell me the score. A couple times she was able to read the numbers, she just said them wrong. By the time the game ended she couldn’t see anything though as her eyes were closed.
Today was pretty good for Janet with more evidence of short and long term memory improvements, some well thought out comments and answers and good results in the gym. Praying for lots of rest tonight and a fun day 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.
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.