Month: December 2012

Beginning of the End

On the last day of 2012 Janet was waiting for me in the living room at Connect all bright eyed and smiley. I’m saying she was waiting for me but she was probably just hanging out. She said she had a good breakfast and her meds so “we can do whatever you want”. Garrett told me she refused a suppository this morning and its been a while since she went to the bathroom so I decided to try and talk her into it. An hour and a half later we had some minor success. The team has now made this a priority.

Janet and I went to the gym so I could give her a good stretch and the result was definitely better than last time. After a bowl of some good homemade chicken noodle soup and some fruit lax for lunch and we were off for home. We stopped at Superstore for some New Years nail polish and thankfully Janet didn’t really remember the place. That’s a good thing as I wouldn’t expect her memories to be good.

Looking forward to a relaxing afternoon to close out an anything but relaxing 2012.

Holiday Mode 6

Today felt like a holiday and I suppose Sundays should. It was a late start for Janet this morning as she was still in the process of getting up when I arrived just after nine. Staff member Sara told me they asked Janet around eight if she was ready to get up and she said she’d rather sleep some more so they let her. Janet told me later that “people were coming into my room all the time” and I guess they were still checking on her every hour overnight. I asked them to stop that and tonight they’ll check every two hours and try to be quiet when doing so.

Breakfast was a bowl of yogurt with the promise of trying a banana tomorrow. It still has to be smushed but maybe it’ll be different enough that Janet will like it. We headed off to church where Janet sang along to most of the worship set and enjoyed the message but still saying in the end that it was a little too long. I’m not convinced she really feels that way as she seemed pretty engaged throughout this service and I can tell when she’s restless. We arrived home after a nice sunny little drive and got our Seahawks jerseys on ready to watch the game. Janet enjoyed a gourmet lunch of wieners and beans. I think anything that isn’t puréed is like gourmet to her. She ate a god sized portion and drank her water obediently.

The afternoon was spent watching the game and it was nice to relax and not be on anyone’s schedule. Janet was quiet but said later that she enjoyed watching football. I got a pretty good stretch on her legs during halftime after a timely request to go to the bathroom.

Dinner was gourmet for her in my mind. Cam and I were having steak fajitas but I’m not ready to let Janet have steak so I made her a lobster stuffed piece of basa. She ate it all plus a serving of sautéed veggies and a few tater tots. That’s the biggest meal she’s had in a while and I think it was a pretty good one nutritionally. Instead of water I allowed her a cup of tea which she happily drank up.

After dinner we had a really nice talk with Janet getting her loud voice going consistently for the first time all day. Back at Connect and lights out at 8:45 a pretty good relaxing day came to an end. Praying for a restful and healing night and thanking Jesus for everyone he has placed into our lives. Looking forward to a day of learning tomorrow.

Rest Equals Loud Voice

Contrary to what Janet thought going in, the little rest she had this afternoon helped bring her loud voice back. She even acknowledged that fact when I presented it to her. Hopefully she will remember it now. She was happy to explore the house a little while I went out to shovel snow before dinner. Cam joined her in a game of Scrabble. Janet seems to like playing but really has no ability to although she is very good at choosing tiles out of the bag. Amazing how often she will pull exactly the number needed on her first try. She does recognize and read words once they are formed so if nothing else, the game is good for her that way.

The spaghetti sauce she and I made was decent and she ate a large portion for dinner. No surprise considering the lunch failure. We watched a little of The Voice afterwards then headed back to Connect for bedtime.

Today was a solid day with a different pace for Janet. I liked the way Kim got her involved in the morning at Connect and her agreeing to a rest this afternoon proved good for her too. Praying for a restful night and a fun day tomorrow.


Janet and staff member Kim were all set to play Scrabble when I arrived this morning. I was a little later than usual after taking Heather to the airport then having a little nap before heading out to Connect. I wondered how Janet would be without me around and I was pleased to find her up and dressed, finished breakfast and excited to play with Kim. I teamed up with her for the game and “we” beat Kim, but non competitive Janet didn’t care about the result, she was just happy to have played.

We went to the gym after that so I could give her a good stretch on the mat there instead of her bed which is a little soft for that purpose. We had to wait for the mat so I had Janet lift some weights and we played catch with her basketball. Thirty three passes without dropping it is our record now. Janet seems to be tighter everywhere than she was yesterday but I’m still glad we took the time to use the mat as it allows me to really see how she’s doing. By the time we were done it was lunchtime. Puréed chicken and vegetables, which according to Janet were “yucky”.

At home Janet helped me make spaghetti sauce and is now “resting” despite feeling “the whole thing is ridiculous”. Looking forward to an active evening.


Heather and Janet hung out at home watching silly shows on tv and chatting for a bit before we Skyped Leslie this afternoon. Andrew and Rachel are visiting Leslie and Gavin and Andrew was first on the screen when we made the call. Janet thought he was her brother Mike at first but caught on after a while with a little help. Leslie joined in and this was probably the funniest I’ve heard Janet ever. She was very talkative in her loud voice and had us all laughing repeatedly. She is definitely gaining conversational skills daily. She doesn’t always have the right answers to questions but her level of engagement has risen dramatically over the last few weeks.

I thought it would be good for Janet to help us do a little grocery shopping before we picked up our sushi for dinner so Heather and I took her to Save On with us. Janet used to be there pretty much every day prior to becoming sick and this was the first time back. I asked her when we got in the store if it brought back happy or bad memories. Without hesitation her answer was “bad”. The store was just as cold as it was to her before so she was happy to get out of there.

We couldn’t tell at first what Janet thought of having sushi for dinner as she was eating it just fine but had a bit of a frowny face on. She never did explain to us why and continued to eat sushi and a few baby carrots and some grape tomatoes till she was full. She never used to like Gyoza but said that was her favorite tonight. All this food is against the Connie rules but was handled well by Janet whom I nagged constantly throughout the meal to finish what she had before taking more. She gave me quite a few cheeky looks which I take as a good sign that she at least thinks she knows what she’s doing and tonight she most often did. We finished the meal off with some of Sandrine’s delicious Christmas Log, another illegal food item, that Janet quite enjoyed also.

After drinking half a cup of water on her own it was time for the teary goodbye to Heather as she flys home to Ottawa at a ridiculous time tomorrow morning. Janet was quite upset that we were “leaving so early”. I reminded her she had been away from Connect since eleven and it was now 7:30 and she was surprised by that. When we got back to Connect I sensed that something was bugging her and she told me she was upset. I asked about what and she said “I’m missing Heather and Laurel”. When I explained how much she had seen them over the Christmas break and that they would be coming back soon she was fine. I love the fact she can now tell me something is bothering her and explain what it is too. Big step.

As we were chatting, one of the staff, Susanne, delivered a nice flower arrangement from Nancy and Jim. Combined with the lovely sketch from Barb that I framed and put beside Janet’s bed it was a nice way to close a busy day. Praying for a restful and healing night and a fun day of learning tomorrow.


When I arrived at Connect this morning Janet was sitting at the dining table with Fred and Chris waiting for her scrambled eggs. She was quite excited about it and had already had her med laced fruit lax. When Lorne brought her bowl of food Janet was clearly unimpressed as he had pureed the egg with some of her mushroom soup from yesterday. Undeterred, she ate it all up as it actually tasted pretty good. I reminded Lorne that Connie had said scrambled eggs weren’t too far off the diet and she didn’t have a real problem serving those. He didn’t commit to anything but I think we can have the real thing next time.

Bob had done Janet’s laundry late last night so I coached her through putting it all away after breakfast. We did some other domestic type duties before getting a good stretch done for the first time in a couple days. Janet’s right arm is loosening up real nice and I got it into a nice relaxed position beside her while sitting on the edge of the bed. Almost identical to the left arm. Nice. Her legs stretched out nice for me this morning as well and Janet showed some really strong movement from the right leg when getting up from bed. Combine that with the good effort at standing for Brian yesterday and I feel pretty encouraged that Janet can beat this spasticity thing.

After the stretch and a pee break we headed home to hang out with Heather on her last day here. Janet ate a good lunch of chili and Chinese food and finished it off by drinking two syringes of water from a cup. Big step!

Looking forward to a fun sushi dinner this evening.


Lunch was an unimpressive bowl of mushroom soup for Janet today. She managed to eat more than half of it and I rewarded her with some of my chili as she was still hungry after losing interest in the soup. I’m really hoping her swallow X-ray happens soon and she passes because she is almost completely focused on real food now. Garret informed us that Janet has an appointment with her GP January 7th so hopefully she will send the order through to KGH that day. Connie said she would fast track the order once it arrives.

The new wheelchair arrived and was ready for a test drive just after lunch. It’s not hugely different from the current one but is more intelligently engineered with enough small improvements to get my vote. Janet seemed comfortable in it even though it was not the exact one Jessica had requested. We will use this until the right machine arrives then probably purchase it. Seems pretty good so far.

The wheelchair testing and fitting took longer than expected so there was just a short time to meet with Mary Lou. She will focus on getting Janet’s loud voice going consistently first among other things and said she has a special computer that displays imagery when someone is talking loudly. She will use this on Janet next week to help her learn when she is actually using her loud voice. Mary Lou thinks bringing in the Music Therapist is a great idea so we will get to work on that in the new year as well.

All these meetings and such wore Janet out a little and I was actually able to convince her to lay down for an hour at three o’clock. She did get up with a little more energy than before and proceeded to eat all of her dinner of mushed up spaghetti and meat sauce.

Garret met with us after dinner to go through all the annoying paperwork needed by Connect. He had Janet sign some of the documents which she was quite excited to do even though she needed a lot of guidance and probably had no clue what she was signing. Good to get all that stuff done and even Janet was relieved to learn we only have to do it once although I think she’d sign any paper put in front of her right now as she thought that was pretty cool.

By the time Garret was done it was after seven and Janet was fading so I got her ready for bed. She seems accepting and comfortable being at Connect so far and likes all the staff she’s met so far as well. I don’t think there is anything planned for her there tomorrow so I may bring her home for most of the day to hang with Heather. Allan leaves for Ottawa very early in the morning and we pray for a safe flight for him and thank him for his help while here.

Praying for a restful night for Janet and an active day tomorrow.

Settling In

Today started off with a shower for Janet. She got a little bit of a sleep in too as she was in the shower when I arrived at nine and had not had breakfast yet. She came back to her room with a smile on her face and ready to go for breakfast. She ate a large serving of fruit lax laced with her meds then tried a little fruit smoothy. That was a no go so Lorne got her a serving of peach yogurt and Janet gobbled that up just fine.

We had time for a little chat and some organizing of her room before Brian the OT came in to start to get to know Janet a little better. He has a student, Rebecca, working with him and Janet likes them both. Janet demonstrated her excellent ability to transfer from wheelchair to bed and vice versa. Brian stressed the goal of making Janet as independent as possible so the staff will be trained in getting her to do as much as possible unlike at KGH where staff didn’t always have time to let her do things at her pace. Brian was impressed by Janet’s abilities and said he saw things this morning that showed her performing better than her chart indicates. That’s the second comment like that since we’ve been here.

I had Janet organize her room a little more before going for lunch.


We are meeting Brian afterward with a new wheelchair to try and then the Speech Therapist, Mary Lou wants to meet with Janet.

Put To the Test

Janet and I returned to Connect and made our way down to the kitchen for dinner. Connie came in a few minutes later and it was time for the big eating test. Garret and Bob had told her Janet was cheating on her diet and I made no attempt to hide that fact and gave Janet a Melba toast cracker to start the test off with. Connie was cautious as expected and said she in no way could endorse a diet like what Janet has been eating the past few days but as she watched her eat the cracker and then the Chinese food I brought she was impressed and would like to have Janet do another swallow X-ray. If all is clear in that then she will up the diet. That is the best result we could hope for tonight and the staff of Connect will contact Janet’s Dr. tomorrow to get an order written for the test. For now the official diet is still puréed and if we choose to give Janet anything different its at our own risk.

Janet was weighed this morning and tonight Bob and I weighed her wheelchair and found quite a discrepancy between Janet’s weight last week to today. Too much to be believable so Bob will verify the accuracy of their scale tomorrow and probably do a re-weigh and wait till next week before stating officially if Janet is gaining or losing weight on this diet. I personally feel she’s pretty much stayed the same this past week.

For once, Janet did not argue about going to bed tonight and was sleeping within fifteen minutes of hitting the pillow. Another good day for her.

Praying for a restful night and an exciting day tomorrow.

Holiday Mode 5

Heather and Allan went out to spend the morning with Janet at Connect. She had already showered and had breakfast when they arrived but she still ate the fruit salad they snuck in for her. The morning was spent touring around the place and watching a little The Price is Right. Janet also got weighed today in her wheelchair but because this is a different wheelchair than the one she was last weighed in we need to recalculate her weight. Hopefully we can do that tonight.

Heather and Allan brought Janet home for lunch and to spend the afternoon. Lunch was an A&W chicken burger and fries minus the bun and lettuce. Janet ate it all with no difficulties. We all played a game of Scrabble in which Heather and Allan “kicked our butts”. Janet and I are heading back to Connect for dinner to demonstrate to Connie how well she can eat real food.

Thankful for a relaxed day and looking forward to some good discussion about food tonight.