wheelchair

The Team Save Janet Report is Out! #TSJ #NFL #kickoff #wheelchair

It was an early start to the day for me as someone named Brian scheduled a wheelchair meeting at Connect for 9:00am. This meeting was actually long overdue so I’m glad we could finally have it even if it was on the early side. We went over Janet’s chair part by part so that the rep could put together a quote for the purchase of her very own ride. Hers will be a little more tricked out than the one she’s using now and Janet chose the color from quite a wide selection. I won’t disclose the color until her chair arrives in a few weeks. We also tested and will continue to test this weekend a “porter” wheelchair. This is a lightweight rather simple chair that folds up easily and could be used for shopping trips, dinner outings and church in place of her larger rigid chair. Having one of these would widen our options for a new car but Jared the wheelchair guy also showed us how easily the regular chair breaks down to fit into any car. Nice to have choices.

I had a little time to spare before my dentist appointment and the staff were a little busy so I took Janet to the gym after our meeting. Jess explained the not needing to go to the gym last night mystery saying she’d told Janet if she did the yoga thing she wouldn’t have to do her stretching routine that morning. Makes sense and Janet agreed after hearing it from the source. Janet did a great job on the Shuttle this morning and is definitely slowly gaining strength. I left her in Jess’s capable hands and went off to improve my smile.

On my return Janet was dusting in the living room so I secretly watched her for a few minutes. I love how she was really concentrating on what she was supposed to do and looking for areas that needed cleaning. She probably wouldn’t pass a white glove test but she made a great effort and used good technique. A nap was out of the question as she was busy doing chores and next up was dinner prep. Grating carrots is hard work for me let alone Janet but again, lots of good concentration and effort but not the greatest technique. Chopping potatoes went really well and chopping peppers was much improved over previous attempts. Janet admitted that was hard work and she was tired afterwards.

While dinner was cooking we went for a little walk so I could get some dinner for myself and the fresh air gave Janet a nice energy boost. She enjoyed her dinner and never complained about going to the gym afterwards where she again had a solid session on the Shuttle. We then watched some real football while Janet was in the Standing Frame. The end of summer is always sad but the start of football season sort of makes up for it. Baltimore and Denver were playing and Janet remembered she used to cheer for Baltimore because of Michael Oher from the movie The Blind Side. He got injured and Baltimore lost badly but the parts of the game we watched were fun and a good warm up for watching the only team that matters Sunday morning. Go ‘hawks!

Praying for continued improvement in Janet’s strength, memory and awareness.

Keeping Score. Late night for Janet. #TSJ

Janet was surprised to see me this morning as she had forgotten about swimming. Jess reported that they tried to go to the gym but it was busy so the only activity Janet got this morning was Speech with Mary Lou. Apparently that went well with Janet talking nice and loud and clear as she practiced asking questions instead of answering them like she mostly does.

Our drive to KGH was chattier than usual but in the pool Janet seemed a little tired and had zero command over her right leg. I wish I knew why this happens and how to prevent or correct it as it was tough for Janet to do her standing and walking exercises in our first session. The second half hour was better though and I was able to let go of her as she floated on her back for a couple of seconds. Same thing with standing on her own. It took a long time to get there but she was able to stand for a good five seconds a couple of times. Walking continued to be a challenge as her right leg was largely unresponsive.

While walking back to the car we were stopped by Monica, the transition nurse from 4B. She was very excited to see Janet and amazed by her progress as she had not seen Janet for probably seven months now. Janet had no clue who she was but enjoyed the compliments. Monica mentioned to me how she and her husband had gotten their Power of Attorney done and updated their wills after watching what Janet and I have gone through without a POA in place. She even told the story to a colleague the other day and they are going to get theirs done now too. If any of you married folks reading this don’t have an Enduring Power of Attorney in place and up to date wills, get on it. You never know what’s going to happen and things can get really messy without that paperwork.

We deviated from our intended lunch destination choosing to support a local business that I spotted along the way, Deli City Cafe. Good thing too as while we were ordering we saw our friend Roger who was just finishing his lunch there. It was nice to see his big smile and to know things are going well for Carrie and he. I wanted to get Janet back to Connect in case we could see the wheelchair guy so we ate our lunch once we got back there but no wheelchair guy. That did allow for a late nap for a tired Janet and I got her laying down a little before four. What was planned as a quick siesta turned into a two hour nap as we both fell asleep until six o’clock. Not sure what that was all about for me but I must’ve needed it.

Bob took Janet to the gym after dinner and she actually went without arguing. Bob mentioned Janet’s lack of command of the right leg but said all else was good. Janet seemed pleased and was ready to watch some playoff basketball. It was a good thing she had that nap as the game was really good and she was actually able to stay up to watch it all as it ended around 10:15. For the first time Janet was able to repeatedly tell me the score of the game and she is starting to understand some of the rules again too. I had her lounging in her wheelchair the whole game and was able to get both legs quite straight and she was comfortable the whole time. I noticed when I put her to bed that her right leg was toasty warm just like her left one, often it is quite cold, even icy sometimes. She was able to move it on command quite well to put her PJ’s on too. Maybe the lounging helped?

As I said goodnight I reminded Janet that Laurel will pick her up around lunch time tomorrow and bring her home to see Heather and me. She said, “I hope I remember”. I’m sure she will. Praying for rest and healing and lots of energy for tomorrow and the weekend.

On the Town. Bright day for Janet. #TSJ

After an afternoon of house hunting I arrived at Connect to find Janet in the gym with Garrett and Joel, an OT student. These are always good experiences for Janet as she gets a full workout so the student can learn all her exercises. Joel did a good job with her and Garrett noticed improvement in Janet’s legs and hips. Brian was there too, he says observing Joel but spent the whole time talking to me so I don’t know about that. It is really good to have Brian leading the team as he is always looking for ways to make things better for Janet and is very easy to talk to. We came up with a few more tweaks to the wheelchair and look forward to trying them. Both Brian and I want to make sure everything is right for Janet before we make the move to purchasing one.

When Janet’s workout was over we headed to her room for a Skype session with Leslie and Gavin. Nice to see them sitting on their deck as opposed to shoveling snow. Janet did a good job of conversing with her sister and made some rather intelligent statements and responses to Leslie’s questions and stories.

I decided since we were going to the Lake Country Coffee House for music night tonight we may as well go a little early and have dinner there too. We met Suzanne there and had a very enjoyable evening catching up with her, listening to some music and having a little food. There is a Keek introduced by Janet if your interested. @larrylatour

Janet and I got back to Connect around eight and she was showing signs of fading and even admitted to being tired. We slowly started the bedtime routine as there was lots to talk about that I hadn’t had a chance to talk about yet. During our conversation we ended up on Facebook and I asked Janet if she knew who this was.

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As soon as she saw the picture she burst out into one of the loudest and longest laughs I’ve heard from her. For a little while I thought she was going to cry but she kept laughing and saying something like “uggily”. As soon as I gave her the first syllable she knew it was Gilligan and laughed some more. A fun way to end a good day for Janet. Garrett said her day was good. Her and Jess made chocolate chip cookies, she had a good session in the gym this morning and even agreed to have a nap. She must’ve been dreaming during that nap as when Garrett got her up around three she was very happy and saying it was her birthday. When she finally realized it wasn’t her birthday she started crying. As long as I’ve known Janet she’s never made a big deal out of her birthday, in fact she mostly wanted nothing to do with it at all. Looks like this year will be different.

Praying for lots of rest tonight that provides lots of strength and energy for tomorrow.

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.

Two Sleeps #TSJ

Janet met me in the hallway as she returned from a reading session in the Den. She was quite smiley and chatty saying she was having a good day. She mentioned going to the gym and having lunch and reading and while she tried hard to say what she had for lunch, just couldn’t get it out. Lorne reminded her it was grilled cheese and she smiled big when she heard that. Sensing she needed a bit of a break after reading I lead her to the living room to watch some TV before Brian’s scheduled session at three.

It was good to chat with Brian this afternoon so we could all get up to speed with each other. He reads this Blog daily so is well aware of what Janet has been up to and that enabled us to talk about bigger picture items such as the wheelchair, food and transfers. I requested a few tweaks to the chair before we purchase it and Brian is confident those will be done without problem. He had read about the beef stew incident and I was able to tell him about Garrett’s meal plan that is in writing somewhere and he said he’d find it and follow up on its implementation. He encouraged a discussion with Tez over which form of transfer Janet should be focusing on now. I’ve been using mostly a standing transfer where Tez would prefer using the sliding board probably feeling it’s too early for Janet to do the standing thing and he’s probably right. I paid close attention to our transfers today and although Janet is stepping with her left leg without cueing now I notice she is not really holding her body that straight, I’m doing most of that, and her right leg is taking virtually no weight at all. I’ll use the sliding board between her bed and wheelchair and other chairs and will stand her for toilet transfers.

Time for a bio break after Brian’s visit. Success again! I then had Janet put her laundry away which she seemed quite pleased to do and was happy when she completed that task. I need to find more chores like that for her to do as she is now not at all interested in the board games. The last couple of days she has demonstrated some real assertiveness and I can sense her wanting to do more constructive things. After a brief rest time she started getting up from bed and got a little mad at me for being in her way. I now realize that reaction came from a “I can do this myself” perspective and she did. I backed right off and said nothing and she got herself all the way to sitting and was quite pleased.

We headed down to see what was happening in the kitchen where Garrett was preparing a nice salmon dinner. Janet asked if she could help with anything but most of it was done by that time so we watched a little more TV until dinner was served. Janet really enjoyed the meal and was too full for dessert. We hung out in the living room for a little while after and I threw some family geography questions at her. She did pretty well, correctly answering where she was born, where Andrew lives and where we met. We had a heated argument over where her mom and Keith live with her finally relenting when she remembered we visited them in Collingwood a couple of summers ago.

I have been counting down until Thursday when Janet gets her peg tube removed and think I am more excited about it than she is. Only two sleeps to go! Originally I figured that was because I deal with it way more than she does but tonight it came to the surface that she’s afraid it will hurt when it comes out. I explained as much of the procedure as I know to her and then changed the subject to focus on the more fun things we are doing that day and she calmed down then. The time I’m spending with Janet is split pretty evenly now between moments of heightened awareness and real insightfullness and moments where she just isn’t processing things effectively. We had another talk on the importance of the afternoon rest time this evening as she lost her energy before 7:30 tonight where as when she has that rest she can go strong until 8:30. I got a little bit of a “so what” from her but I think deep down she knows the rest makes a difference. Before bed I read to her a Christmas letter she started writing a couple of years ago that I found while purging some cupboards today. Janet’s writing has always been very difficult to read and this was no different and we both had a good laugh trying to decipher what she had scribbled. Janet says she remembers writing that letter and I believe her as she wrote some things there that are true Janet things to say and I could see the recognition on her face before she even said anything. Cool.

Praying for rest tonight and an active day of learning and recovery tomorrow.

Gourmet Puréed #TSJ

When I got to Connect this afternoon I asked Janet how her day was so far. She was happy to report that she “got up this morning”, had a smoothy for breakfast and did not go to the gym. I thought that was pretty good reporting on her part. Turns out she did go to the gym but shortly after arriving a new resident with some behavioral issues came in and disrupted things enough that Janet started crying so Garrett took her back to the “house”. She had some Speech therapy before Rikki made her a colorful lunch of green beans, carrots, cottage cheese and pork. I was surprised to hear about the cottage cheese as Janet had thought it pretty disgusting at KGH but apparently lapped it up today.

Our chat took place in the living room while waiting for Brian to come and meet with us. We talked to him in detail about the wheelchair and now have a plan in place to get Janet’s chair set up ideally for her so I can actually buy the darn thing. Brian offered a few accessories intended to make Janet’s day to day routine easier. Most of them I found to be too compensating and Brian agreed that we need to have Janet learning and re-learning to do things rather than having something do it for her. One useful item is a short easel that sits on top of her desk at an adjustable angle and allows a book or the iPad to be positioned in a more useful way for her. Some of the items were food related and we agreed to leave food prep out of Janet’s itinerary until she is cleared to eat real food. That brought up the question of the swallow X-ray. Connie had emailed today saying KGH has yet to receive the doctor’s order. I phoned her the doctor’s office right away and was told she had some things to do to it before sending it off. Translation, she forgot about it. Grrrr. We had a good long talk with Brian and Janet was very patient throughout and near the end she went off to explore the living room a little. She returned with a pillow on her lap so I invited her to a pillow fight. She thought that was great.

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Janet went for a shower before dinner and we hung out in her room for the few minutes we had before heading down to eat. Rikki made another colorful plate for Janet, carrots, mashed potatoes with a little yam in them, cottage cheese and chicken. The best looking meal Janet has had at Connect and apparently a tasty one too.

Since Janet missed out on the gym this morning I took her in for some leg stretching and got her on the Shuttle as well. I wasn’t able to set it up as well as Tez had it but Janet still got a decent go at it. She was reluctant to try standing so I tricked her a little bit into doing a standing pivot off the Shuttle. She did really well once I got her started towards standing.

Bob was leading a bunch of the residents in a poker game tonight and Janet enjoyed watching for a little while. She didn’t understand the game of course but liked the loud action. She also really enjoyed watching some YouTube before bed and after being tucked in agreed that today was a good day.

Praying for rest and healing and a productive day tomorrow with positive news about the swallow X-ray.