Janet, A Success Story. October 29. #TSJ

After picking my mom up at the airport today we went to Connect to get Janet and found her holding court in her room with Debra and Big Country. She had gone across to Debra’s room to see if she wanted to chat and Debra immediately turned off her TV and went back over with Janet. Big Country saw and heard the two women talking and didn’t want to be left out so he wheeled into the room as well and they played a guess the animal game together. Janet was pretty wound up about leading that group, it was almost like she was teaching again. High five for taking the initiative to approach Debra. Janet agreed that this could be something she could volunteer to do somewhere, post Connect.

Today was our first chance to have a birthday lunch with Courtney and Janet’s first wheelchair free visit to Joey Kelowna. I took her hand to speed things up a little as soon as we were being seated and encouraged her to try the bathroom on her own after lunch but she chickened out on that one. She’s slow but fairly sure of herself using her cane and this seems to be the right way for her to get around for now.

There was no hesitation in going for a nap once we got home then chef Janet was at it again helping with dinner. Janet said SheLife was fine tonight and included a solo trip to the bathroom. I had assured Heidi ahead of time that Janet was cleared to go on her own and she told me after that when Janet went, the whole table was watching to make sure she got out of the room ok. I understand their concern and remember how I would never let Janet out of my sight. It feels really good to be able to do that more and more.

Praying for a good night of sleep for Janet and a fun day tomorrow.

Janet, A Success Story. September 8. #TSJ

This turned out to be a rather mellow Monday for Janet. She told me that with everyone at the breakfast table this morning it was fun and kind of silly. That made for a good start and her gym routine was focused on stretching which can be uncomfortable but doesn’t require much effort from Janet. She was happy.

When I got to Connect this afternoon Janet was watching the final of the U.S. Open tennis so we hung out until that was over. Connect is celebrating it’s birthday soon and is putting together a memories book that the residents are being asked to contribute to. This proved to be a good memory test for Janet, and me, in trying to come up with an event that she’ll always remember. She was pretty stuck on how she feels grateful for the very helpful staff so she wrote a nice couple of sentences around that instead of going for the funny story like some folks. Janet did well to sort that out with only a little coaching from me.

After dinner I literally dragged Janet around the hallways of Connect in order to get her 400 meter walk in. Since I wasn’t sure how many lengths we’d have to do I got her to climb the stairs as well so by the end Janet was pretty tired. She did well and I’m not concerned about her stamina at all,just have to work on the speed.

The rest of the evening was hers and she chose to watch a little football before realizing she was too tired after missing her afternoon nap so she called an early bedtime and only lasted for fifteen minutes of reading before she was snoring.

Praying for an uninterrupted night of sleep and lots of energy for a productive Tuesday.

Janet, A Success Story. June 11. #TSJ

Nap time was late for Janet today. She called me at 2:40 to say she’d finished her workout and was going for a nap. There was no particular reason for being so late and she didn’t even do all of her gym activities, everything just took a long time to get done. There was an opportunity to go sailing this morning but Janet turned it down thinking she’d only have to do all her other stuff later in the day. When I explained its OK to do different things once in a while and not do every single regular activity, a light seemed to come on, so maybe next time she’ll say yes.

Janet was ready to get up when I arrived and she asked to get her bike ride over with. The walk to the gym was not Janet’s best but she did it then put in a really good bike ride. The walk back was better but she still seemed a little off so I let her hold my hand all the way to her room then down for dinner. Seeming a little off was an understatement after dinner. Janet’s chore of the day was to empty the sanitizer and put away the dishes. Last time she did this it went really well, tonight she got it done but under major protest and with a couple pretty good meltdowns. Not sure why, but it seemed like her confidence level was way down and her balance a little off. Her right leg action appeared to be coming much more from her hip than usual too. The freestyle walking trip to get her meds at the end of the evening was pretty good so I’m putting it all down to a bad day and hope that a more relaxed day tomorrow will rejuvenate her.

Since its Janet’s birthday next week and Humberto’s on Sunday the house is having a picnic for them in Vernon tomorrow. Janet doesn’t think it’ll be fun but I know Jess made a carrot cake for her so that at least is one good thing.

Praying that Janet has a solid night of healing sleep and wakes up tomorrow with a positive attitude and a willingness to fully participate in everything she’s asked to do.

Freedom 55. Janet gets hungover before her party. #TSJ

Another roller coaster week for Janet that started out really strong then took a huge dip in the middle with a nice bounce back to finish it off.

Last Thursday was a stellar day for Janet with strong workouts in the gym, good results from her Speech Therapy and a display of heightened awareness that had me excited about the progress she’s making. Curtis had her in the gym late in the morning and he generally puts Janet through a very thorough routine so when he says she did well, it means something. I saw proof of how well Janet was doing that night when she allowed me to take her onto The Shuttle. That dreaded machine from the past that used to produce nothing but tears and anger. This time Janet was totally focused on doing the best she could and her performance was record breaking for me and a really good demonstration as to how much stronger she’s gotten. Instead of blowing off my compliments she seemed to somewhat accept them this time. Janet followed up her Shuttle performance with a nice hour long session in the Standing Frame. One reason she was able to hang in there so long I believe was, she was totally engaged in a TV show called Criminal Minds. There was something about it that drew her in even to the point of knowing “they are trying to catch the Anthrax guys”. Brilliant. Another example of Janet’s increased awareness was demonstrated during a first time Skype chat with her friend from years ago, Dianne and her daughter Whitney. I could see the memory lights flashing in Janet’s eyes as the conversation progressed and there were lots of smiles and laughter on both sides of the screen.

So ended a real “up” part of the roller coaster ride as Friday started a big “down” turn. After weeks of chasing faxes around from office to office it was finally arranged to increase the dosage of Baclofen for Janet in hopes of alleviating some of the spasticity in her legs. There was to be a gradual increase to triple what she’s been on for about nine months now starting with a doubling of the dose Friday morning. Janet’s day started out quiet with some sit to stand exercises and a little Speech with Alana. I picked Janet up and took her swimming at KGH and her own evaluation of the sessions was “ok, but not as good as last time”. Pretty accurate as she seemed tired. We stopped for a few groceries on the way home and Janet was a big help in the store, enjoying picking out vegetables etc. By the time we got home it seemed too late for a nap so I agreed to let her try and push through thinking we could have an early night. As we started making pizzas it became quite clear she wasn’t going to make it. She couldn’t figure out for the life of her how to chop a mushroom, something she’s done routinely in the past. Off to bed she went and we tried again an hour later. The nap refreshed her enough to enjoy building her pizza and eating it outside in the sun. We watched The Voice afterwards and Janet spontaneously started singing to The Swon Brothers rendition of Danny’s Song. Cam called and had a nice chat with his mom then the roller coaster started downhill real fast. Seemingly out of nowhere Janet lost all that awareness that was so prevelant the last couple of days. The only way for me to describe it is she got stupid. There were lots of tears of frustration, lots of unrecognizable speech and it was very difficult for me to maintain any level of patience. Janet insisted on a hot tub before bed and I was happy to oblige her that and it relaxed her enough she could settle into bed and fall asleep just before ten. She woke up on her own around 9:30 Saturday and seemed ok. She managed a good breakfast but instead of the usual morning fog lifting as she ate, it seemed to grow thicker. Her speech deteriorated, her ability to drink from her glass dissappeared to where she couldn’t even suck water through a straw. It was too late to call off a scheduled visit from her friend Janet F. and when she arrived Janet perked up a little and enjoyed the visit but was very quiet. I took her out for a walk afterwards hoping the sun would energize her. We watched a little soccer at the neighbourhood school but Janet couldn’t “see” the teams we were watching despite their bright yellow and blue jerseys. Home we went and I was starting to get a little concerned. Janet ate a sandwich and happily went for a nap which ended up lasting six hours. During that time I read about every possible cause for her rapid decline and settled on an intolerance for Baclofen. That’s the only thing that changed recently so that had to be it. When Janet woke and only wanted a piece of toast for dinner I started wondering if there was anything else going on but since she had been eating well up until then and was toileting fine I decided to let her try and sleep it off some more. Sunday morning started comparatively well as Janet seemed more coherent and ate a good breakfast. Her speech was better but there was still a lot of gibberish there. She made it until 12:30 before crashing until four when I made her get up to have some water and hopefully some dinner. Her drinking ability had improved and she ate well at dinner. Overall I was less concerned even though she was nowhere near regular Janet. She was following commands well and eating and drinking and not showing any signs of serious illness. Janet was in bed by 8:30 and sleeping before I finished our goodnight prayer. Monday morning I phoned nurse Jen at Connect and she agreed to let me hold Janet’s morning dose of Baclofen. I also talked to Dr. McCann’s office and he later agreed to drop her prescription back to the level it had been at prior to the weekend. The roller coaster started an uphill climb almost immediately.

After an almost three hour nap mid day Monday we headed off to see Janet’s GP who was pretty confident Janet’s “down” weekend was the result of the Baclofen increase. We aren’t calling this an overdose like the Dilantin episode as this time the drug doesn’t seem to agree with Janet as opposed to Janet having too much of it in her. By Monday evening Janet knew my name again and was starting to argue about going to the gym so I knew things were OK. She ate a little dinner, tolerated thirty minutes in the Standing Frame and knew when the TV show we were watching ended that it was time for her to get down. She was smiley and giggly as I put her to bed and I was very relieved.

For the first time since this all started I made a phone call to Janet. Tuesday was her birthday so I called when I knew she’d be eating breakfast to wish her happy birthday and also to assure myself she was alright. Her laughter and strong voice were all I needed to know this was going to be a good day. I arrived at Connect in time to observe some of Janet’s singing with John session and noticed there was more laughter than singing going on but that is very theraputic itself.

Janet agreed to have a nap after John left so she could be ready for all the birthday Skype sessions coming her way later in the day. We probably did a few too many back to back but it was funny to hear Janet wish everyone else a happy birthday as they said that to her. Janet and I enjoyed a nice dinner at a local Italian restaurant including a glass of wine and we gave her the night off from any gym related activities.

She was happy to watch a very entertaining basketball game before going to bed.

Today Janet was back to her regular self if not a little more than that. I gave her time to nap and when I finally went into her room she put on a huge smile and we chatted on her bed for half an hour with her talking really well and laughing lots too. As she was getting up, Brian stopped by to see some of her pole transfers and mentioned how impressed he was by her standing abilities. Janet has made a lot of progress in the last few weeks. From there she helped Curtis prep dinner and when it was ready devoured her portion along with an apple and a generous slice of a very delicious cheesecake Jess made for her birthday. Even after that large meal Janet managed a good session on The Shuttle and elected to use the Standing Frame rather than do some stretching. We used a different frame tonight which proved to be not as good as the usual one but it was worth a try. Janet has an appointment with Dr. Miller (neuropsychologist) early in the morning so I tried to encourage her to go to bed around 8:30 but she waved me off “saying” she’s watching the hockey game. I gave her a few more minutes and thankfully Chicago scored to end the game and off we went.

I know the roller coaster is not likely to end but I hope for Janet’s sake we don’t go on a ride like this past week again. I’d much prefer a steady climb upwards. I asked Janet to finish off the video tour of Connect but she wasn’t interested and instead wanted to say thanks to everyone for the birthday wishes. After a great many takes this is the best we could get and I think it shows pretty clearly how hard Janet is trying. I’m praying that strong effort continues and that she is rewarded with ever increasing abilities.

Sing Sing Sing #TSJ

For the first time in a long while Janet was smiling at me as soon as I entered the house today. Typically when I arrive she doesn’t clue in until I’m a couple steps away from her but this time I saw her smile as soon as I cleared the door. She was holding a picture of her four kids and was proud to show me Andrew and Laurel but she couldn’t get Heather or Cam. Lorne told me he experienced the same thing earlier as he had been using the picture to have a little conversation with Janet. She would often get parts of questions right but not the whole thing. That’s been the more common result with Janet for a long time. We started playing match the Sesame Street characters when I realized it was time to Skype Mary/Gaga.

We got to Janet’s room just in time and Janet was all smiles throughout the conversation blowing her mom many kisses at the end. A call to the birthday girl, Leslie, was next. Janet is always happy when its her younger sister’s birthday as she catches up to her in age. Like Janet, Leslie is not the most technologically adept person so her husband Gavin has to set things up for her prior to each Skype call and we usually get to say hi to him as well. Many of you don’t know Gavin, or do you? I made sure to get his permission to release this photo of him as identified by Janet today.

20130122-223658.jpg Cute isn’t he.

The highlight of the call to Leslie came when Janet sang in loud voice the Happy Birthday song to her sister. It was kind of a karaoke thing as I played the song on my iPhone and Janet sang along. Pretty cool.

With the chit chatting done we went to the gym and I tried putting Janet on the Shuttle to start this time. Fail. All she did was complain how “everything hurts”. Off to the mat we went and had a good stretch. Bob joined us for part of it and reminded me of a couple things Tez wants Janet to do on her own while stretching. Both exercises involve Janet moving her legs individually and I’m really glad Bob got her doing them as she did really well. I’m impressed considering how tight everything seems. After a couple of goes at the stripper pole it was back to the Shuttle and this time Janet worked hard with only a minor breakdown. She managed thirty reps at one band, twelve at two bands and six with her right leg only and one band of tension all done at a nice controlled pace. Good workout.

Janet gobbled up her dinner then played a good game of match the Sesame Street characters. She is improving on naming them and matching. She was reluctant to do any sing along stuff but jumped right in as soon as I started playing the songs. She sang My Bonnie Lies Over the Ocean, Row Your Boat, You Are My Sunshine, Take Me Out to the Ball Game and Zippadee Do Dah nicely loud and clear and smiling all the time. Really fun to watch. To continue the singing theme we watched a little YouTube before shower time including Susan Boyle’s audition on Britain’s Got Talent. Janet really enjoyed it and was very surprised she sounded so good and even said she “remembers her winning”.

We had a little time after her shower before bed and Janet asked to watch something funny on YouTube so I found some clips from the Carol Burnett Show. One of which featured a young Robin Williams that Janet laughed out loud at a couple of times. We ended with Carol’s closing theme song and Janet had a huge smile on her face as she clearly remembered I’m So Glad We Had This Time Together. I’m glad for every minute I get with Janet and today’s were all positive. Praying for a restful night and a day full of recovery and learning tomorrow.