Recovery

2 Alarms, No Fire. Long day for Janet. #TSJ

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. JanetLarryWedding20030419 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.

Almost. Janet just about makes it without a nap. #TSJ

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.

Flipping Out. Janet BBQ’s and gets mad about the gym. #TSJ

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.

This Girl is on Fire! A quote from Garrett, nothing to do with Alicia Keys. #TSJ

To my disappointment, Janet was waiting for me in the living room when I arrived at Connect a little before three today. I had told her last night I would be in AFTER her nap and that I wanted her to have her nap before I came to see her so we can do more together. She seemed to get that last night but had no concept of it today. Lorne said she flat out refused the nap even after nodding off in her wheelchair. I was a also a little disappointed she was not using the lounging function of her wheelchair so as to stretch her legs. Lorne did say he got Janet to the gym this morning along with a new volunteer, Joel, and they went through Janet’s complete workout. He said she was a little stiff which I found surprising but she had just had a shower and gets quite cold afterwards so probably tensed up because of that.

Janet didn’t argue with me about taking a nap and she slept right to five o’clock when we went out into the sun for happy hour. Dinner was late tonight so Bob offered to take Janet to the gym beforehand and she agreed based on being able to play poker after dinner. Unfortunately the gym was in full use when they got there so Janet had to wait till after dinner. Garrett took Janet for the second attempt at the gym and had a great workout with her bringing her back saying “this girl’s on fire tonight”. He sure had Janet laughing and had run her through all the family questions and was very impressed with her answers tonight. It’s not just me noticing the cognitive gains recently as sing along John mentioned an improvement in Janet’s memory today as well. I peaked in on a little of Garrett’s workout with Janet and he had her on her tummy laying flatter than I’ve seen in a long time and she was quite comfortable. Her left leg still wants to pop up when in that position so Garrett put a small weight on it to hold it down. Seemed to work. Back in the room the questioning continued with Janet answering quickly and correctly ninety percent of the time. She was even able to describe a little of her workout. I demonstrated to Garrett how much better Janet is standing these days and I was able to get her up to a point where I was barely hanging onto her and she stood for a good thirty seconds. That’s a long time for Janet and a huge improvement. She was even happy with it.

Missing poker because of the gym didn’t seem to phase Janet at all. There were so many positives coming out of the workout that she couldn’t help but be pleased and when offered the choice of watching the last of the poker, reading, watching TV or playing a game on the iPad, she chose the iPad. I guess she knew she was on a roll and wanted to keep it going. The first game involved reading sentences which were displayed on two lines of about six or seven words each. She did very well reading them as I pointed to each word and she followed. We moved onto the game where she has to identify the object pictured. There are a series of clues that can be given and tonight Janet got three or four pictures right with no clues at all and a lot correct with one clue that is spoken in a complete this sentence format and I was very impressed by how many she got that way. By far her best performance on that app. She asked to stop after twenty minutes or so and was ready for bed after quite a busy time this evening.

Praying for lots of rest that brings lots of energy for an active day tomorrow and for Janet to cooperate at nap time.

Walking Tall. Janet continues to improve. #TSJ

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.

Short. More memory and a baby. #TSJ

Sunday felt like another sleep in day and as nice as that would have been I wanted Janet to be a little more active than yesterday so I woke her up around 9:15 and we started our day. It’s amazing to me how quickly the time goes by when you plan to go somewhere. Yesterday, no plans, time didn’t matter much and it seemed to move as it should. Today, plan to leave for church by 10:40, we were eating breakfast by 9:45, lot’s of time right? Started the car at 10:47 and by the time we got to church our favorite spot was taken so we had to sit on the other side of aisle. Turned out to be fine and Janet enjoyed the service and the visits from Tim, Kiko, Karina and Rachel afterwards but the biggest smiles were for my former CedarCreek colleague Gord and his baby boy, Ben. Janet got to hold him and really enjoyed her time with the little guy. You can see a video clip on Keek, @larrylatour .

When I bought Janet’s anniversary ring there wasn’t enough time to size it so we went over to the mall after church to drop it off and have a Food Court lunch. As much as I dislike the mall I feel it is good for Janet to experience it once in a while and it was fun showing her all the food options and letting her pick which one to go to. She chose a Vietnamese place that was actually pretty decent. We sat near a family with babies and Janet was able to smile at them off and on in between mouth fulls. It was a worth while trip and set Janet up nicely for a stretch and a nap when we got home.

Her nap was inconsistent so I let her stay in bed until 5:30 to ensure she had enough energy for the evening. Not that we had any great plans, I just don’t like it when she crashes at eight o’clock or earlier. Janet chose salmon for dinner with vegetable fried rice and we watched a little of the Junos and The Voice with a Skype chat with Laurel thrown in between. It was good timing on the chat as it gave Janet a little energy boost and showed Laurel and I some more short term memory gains for Janet. Laurel asked her what she had done this weekend and without hesitation Janet said, “well, it was our anniversary…”. She knew we went out somewhere and that she got something but couldn’t name those things. She also talked about looking at Laurel and Raj’s wedding pictures and said she was sad she wasn’t there. Once again, a moment that would have brought a complete meltdown before but resulted in only a minor choke up this time. After the Skype session I praised Janet on her memory and that brought the tears. Seems realizing she can do these things now is upsetting to her. I guess she views them as simple everyday things that she ought to be able to do easily but I’m still going to give her positive feedback when I can.

Bedtime came after a bowl of ice cream and since Janet had lounged in her wheelchair for a couple hours tonight I didn’t put her through any stretching. Praying for a good rest tonight and lots of energy and flexibility for the pool tomorrow.

Kicking In. A relaxing day as the Botox takes effect. #TSJ

A sleep in Saturday for sure as Janet opened her eyes at 7:30 then happily went back to sleep until 9:30. That set the pace for a relaxing day hanging out at home. She chose her traditional breakfast which we enjoyed together with no idea what we would do next. Fortunately Janet asked to watch TV while I went to shower and while searching for something to watch I noticed an NBA playoff game about to start. I thought they started Sunday so we scrambled to the computer to fill out our brackets in Raju’s annual Pool. We got our picks in just in time and Janet enjoyed the process making some good choices in winners but I think she has too many series going the full seven games. Anyways it’s something she enjoys doing and we had basketball on in the background all day.

The only scheduled event of the day was a Skype chat with Leslie that went well despite some technical challenges. Heather checked in with us later on and it was good for Janet to catch up with both of them. I’ve had to resurrect my role as physio therapist while Janet is at home so we can maximize the potential of the Botox and when I stretched her legs this afternoon I noticed an improvement right away. It was even more noticeable tonight as I was able to get her left leg down to almost where we used to be able to get it in the 4B days. Janet is not too happy that we are doing this stretching stuff at home but she was OK with lounging with her legs up in her wheelchair. Her standing for transfers was quite good today as well and I sense a little confidence coming back there. That increase in confidence saved her from a total meltdown after seeing some pictures of herself from her KGH days. I had just shown her photos from Raju and Laurel’s wedding and at the end of those there were a few unflattering pictures of Janet and she got a little upset but kind of accepted that she’s come a long way. She asked me to turn them off which I did and she was on the verge of really crying about it but held it off. A nice improvement.

Since the day started late, nap time was late too but Janet did have a brief one that allowed her to do a good job making a salad to go with dinner tonight and she really enjoyed watching The Voice together especially since I made popcorn for us. All in all it was a very relaxing day at home just making things up as we went along. One highlight for me came as we were doing the nightly rundown of the day and as I mentioned the first couple of things we did Janet chimed in with “and we picked our teams”. Love my sports junkie and nice to see a little short term memory action.

Praying for a restful night that brings lots of energy and awareness for tomorrow.

Anniversary. We celebrate ten years together. #TSJ

April 19, 2003. Lynn Valley United Church

April 19, 2003. Lynn Valley United Church


Today I am happy to say is the tenth anniversary of Janet and I being married. At our age, ten is not a huge number for married years but boy has a lot happened over that time. All seven of “our” kids are “grown up” and are out on their own, we moved to Kelowna and have been through career changes and life changes and have developed a network of friends and supporters unlike anything either of us has ever had. I am blessed to be married to Janet and we are blessed with family and friends that we love dearly.

The day together got off to a bit of a rough start as I delayed my arrival so that Janet could do her routine things, including a nap and be rested and ready for our dinner date tonight leading into the weekend at home. Janet was in bed when I got to Connect but wasn’t sleeping and after the surprise of seeing me wore off she started crying as she had been waiting for me all afternoon. I told her last night I’d see her towards the end of her nap and we would get ready to go out to dinner. She remembered the going out for dinner part well as she refused lunch but forgot about the arriving after nap time part. It’s nice to be wanted but that wasn’t the way I wanted to start the weekend. After lots of talking while laying down with her she fell asleep for an hour and awoke refreshed and determined to go out. I had brought some fancier clothes to try on her for dining out but the pants that barely fit her a month ago no longer do so back to the usual pants we went with a slightly dressier shirt than normal.

Dinner was at Bouchons, a French bistro in downtown Kelowna. I had showed Janet the menus from there and one other restaurant that we both really like and she chose Bouchons and a great choice it was. Very good service, beautifully presented and prepared food, a good wine list and a really cute room that is bright and lively without being loud. Janet really enjoyed her dinner, even commenting on it later on her own, something that never happens. I’m sure it was the food but it could have been the wine too. Janet actually had two glasses tonight as the baked pear tartlet she started with commanded a lovely Sauternes to accompany it. A great start and it was pretty funny watching her drink the Sauternes and a glass of Viognier during the main course. Just before the mains arrived I presented Janet with an anniversary ring. Something I would not have gotten away with prior to the aneurysm. I guess I shouldn’t be surprised that she knew how to put it on and on the correct finger too. There is a video of the presentation on Keek.

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Janet chose ice cream at home for dessert in typical Janet style and we enjoyed that while I showed her our wedding pictures from ten years ago. There were lots of laughs, a few surprises and some memories kicking in as we scrolled through them all. We both have to laugh at the fact there isn’t one photo of just the two of us on that day. Silly us.

Janet went to bed, full and happy and looking forward to a relaxing day tomorrow.

The intent of this blog has never been to shine a light on myself at all and I don’t want you to read this next story in that way. I include it so that we all may remember the power of words and the importance of taking action.

As Janet and I were leaving Bouchons we spent a few minutes having the hostess take our picture and after that we went outside so I had room to put Janet’s coat on. While doing that a gentleman who had been at the table next to us came out of the restaurant saying he wanted to thank me. My first response to him was “for what?” but I knew by the look on his face what he was going to say next. He went on to praise me for my care and love of Janet and how inspired he was to see us together. I’m never sure how to respond to compliments like that so I reiterated by commitment to Janet and thanked him. I truly thank him for leaving his table, coming outside to shake my hand and “thank me”. Kind words delivered that way have enormous power. Janet almost cried after he left saying “that was really nice” and I am touched thinking about it now. Something prompted him to take the risk and come out and talk to us and by obeying that prompt he made two people very happy. It has been my prayer since very early on in this journey that Janet’s situation be used to inspire others. That prayer has been answered many times and I pray it is many more. If you get a chance to say a kind word to someone, anyone, do it.

Thanking God for everything.

Chiming In. Janet talks a good story. #TSJ

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.

Pimped Up. Janet gets a new wheelchair. #TSJ

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,

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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.