swallow

Uneventful. Janet tired today. #TSJ

Today was one of those days where I feel incredibly blessed to live in Kelowna. I woke up to sunshine, went skiing for a few hours in powdery snow and sunshine and on my way to Connect saw the first golfer of the season and a kid riding his bike in shorts and t-shirt. Spring has sprung and it’s awesome. Janet was really happy to see me and we had a good talk for about forty-five minutes with her sitting on the couch with me in the living room. She tried real hard to tell me about her day and managed to get the basics right with some prompting. Brian joined us for a brief chat prior to his week away in Cabo San Lucas starting tomorrow. We wish him a well deserved relaxing vacation. When he returns we will start looking to upgrade Janet’s bed, the falls mats are gone now, using a transfer belt for transferring Janet to the toilet and Shuttle etc., and getting started at the KGH pool. Tez spoke to pool guy Jim and it was agreed to wait two weeks for Janet’s former peg site to heal completely and then she can go “swimming”.

Brian exited around four and Janet said she had not had a nap so I suggested she have one even though it was kind of late. I was hoping for a more energetic Janet at dinner time and through the evening and she agreed. I had to wake her at 5:30 and she didn’t really want to get up then but it was dinner time and I was worried she’d be up really late then too. Quite the opposite. Her energy level was quite low all evening. She ate a good dinner cooked by Chris and monitored by Connie who was checking Janet’s swallowing and chewing abilities. No real change from the last time Connie saw Janet and she recommends we watch the Chipmunking Janet is doing on the right side and encourage her to chew on the left. Also, Connie wants us to monitor Janet’s coughing to see if it only happens when her head is lifted up or if it also happens with her head down. So far I’ve only associated the coughing with tiredness so it will be interesting to watch for the other trends. Apparently head down is a safer position to swallow in as the airway is restricted and Connie would be concerned if Janet were coughing then. The conversation at dinner was really good tonight but Janet was too tired to participate or maybe overwhelmed by it all. Often the table is on the quiet side so maybe tonight was hard to process for her. It was fun though.

Garrett weighed Janet after dinner and recorded another small gain. I asked her to put away her laundry which she happily did but needed a lot of coaching as she was very tired. I even had to rebrush her teeth tonight as she seemed unable to master the needed motion for that task. I had asked for her bedtime med to be switched to pills from liquid and tonight was the first go at that. Should maybe have stayed with the liquid. Hopefully she’ll do better when not so tired.

A rather uneventful day for Janet. She did have Speech and used her new workbook but could not remember doing so. I saw it on her desk after getting her into bed and asked her a couple questions from it and she answered correctly with a smile. Tired but not out of it. Praying for a restful and healing night and for a good day of rehab tomorrow.

Month Eight #TSJ

Day 246 was a good one for Janet. Lorne and Garrett worked with her this morning in the gym and with some Speech. She didn’t fall out of bed or her wheelchair and ate well. When I arrived she was waiting in the living room to go back to the gym with Tez. The guys were updating Janet’s chart and agreed that she needs to be on a regular toileting program. I talked to nurse Jen about that later on and she will develop a routine so Janet gets plenty of opportunities to go to the bathroom. Today was much better in that regard. Lorne and Garrett also started making up a bunch of side dishes for Janet to eat so she gets more vegetables and then the only thing that needs to be cooked at meal time is the protein. Food has been a challenge and will continue to be until Janet passes that swallow X-ray. No word yet as to when she gets a chance but the word has been put out to Connie to see what’s happening.

Janet failed the “who am I” test again but caught on quicker today for sure. We played an expanded version of it at bedtime and she did really well naming family members except her own kids. Usually she nails those easily but tonight it was everyone but. Still waiting for Tez we played a naming game on the iPad and Janet did reasonably well after getting two or three clues. She definitely knows things once she sees the word the problem is in pulling that word out of her memory bank on its own.

Tez was finally ready for Janet around three o’clock and he worked her pretty hard again. This was another training opportunity for the staff and Tez wanted to add some more hand, arm and shoulder exercises so there is a solid routine for those in the mornings and one for legs later in the day. Janet’s right arm continues to be nice and loose and Tez got some good range from it and even though Janet cried you could see improvement from last week. Tez got Janet to hold her right hand with her left and intertwine her fingers then lift her arms up high. Janet was straining hard to touch Tez’s hand about a foot and a half above her chest but she did it!

Getting Janet on her tummy was a challenge today as she was pretty worn out from the arm workout she had. Tez only kept her there long enough to get her doing some pushing back with her legs as he applied resistance. From there we got Janet on her knees again and she really seemed thrilled once she got there. It took a tremendous effort on her part as Tez had everyone back off on supporting her so she was doing almost all of it herself. Excellent effort.

The next stage in transferring for Janet is going to be using a circular pivot board that Janet will stand on, spin, then sit. We tried it a couple times and its still really hard for Janet to do on a regular basis but will be incorporated into her workout.

Finally Janet got to try the Shuttle Machine. This is a piece of equipment I noticed as something Janet could maybe use when we first toured Connect. As you can see from the video she caught on real fast. Using this regularly will really help Janet build some strength in her legs.

After all that it was time for a bathroom break followed by a Skype session with Mary/Gaga and Keith. Janet was able to converse reasonably well and I think enjoyed the chance to see and talk to them both. Dinner was a massive bowl of puréed spaghetti and meat sauce. It looked disgusting but Janet gobbled it up then enjoyed a desert of “yummy” pears.

It is truly amazing to think back eight months and see just how much progress Janet has made. Seeing her “kneeling” and “standing”, working on that Shuttle Machine, talking, laughing and eating well is truly a blessing. Thank you Lord for every minute I get to spend with her and for the healing you are bringing to her. Thanks to all of you for the prayers, love and support. #Team Save Janet

Snowday #TSJ

After shoveling my way out of our driveway and avoiding all the stupid people on the highway I arrived at Connect just as Janet was returning from the gym with Marlisa. She complained that her arm hurt and that she cried during their stretching session but she was telling me all this with a smile on her face so I played it down and Marlisa didn’t seem too concerned. I then got Janet ready for the trip to the doctor with plans to go home after that as there was nothing planned for her at Connect and I didn’t want to be on the road if I didn’t have to be.

We made it to the doctor’s office right on time and waited just long enough for the snow to melt off of Janet’s wheelchair onto the office floor. That’s what they get for doing a crappy shoveling job. Our chat with Dr. Wiese was pleasant and she complimented Janet a lot on how good she looks and how well she’s done so far in her recovery. The doctor did seem to be up to speed on Janet’s situation and did not hesitate to order the swallowing X-ray and wants to see Janet once a month now to keep tabs on her. Janet said to me afterwards that she had no idea that was the doctor she just talked to but she was nice. That’s all that matters I guess.

At home it was lunchtime and Janet had a nice big bowl of tomato soup. Seemed to suit the day well. I also let her have some crackers and cheese just to keep the rebelliousness going. I went out and shoveled more snow after lunch and Janet spent that time exploring the house and getting herself stuck in our bedroom doorway. She thought it was pretty funny and couldn’t tell me why she had even gone down there as she said she was cold but it’s way colder in our room than the family room where I left her. She played with Nash for the rest of the time I was shoveling then we played the Sesame Street Memory game. Actually we played our own version of it as there was some setting up to do so I had Janet match all the character cards as we detached them from their holders. She did really well with everything on her left and struggled a lot with anything to the right.

A little later on we played a game of Spelling Bee Bingo and Janet beat me easily even yelling out BINGO when she got her last letter. I cued her but it was still cute. Joel and Kiko stopped by for a visit complete with a very yummy casserole and massive dessert. It was nice to sit and chat with them in our home as opposed to a hospital room. I just wish we could get Janet talking louder and more.

Janet ate another rather huge dinner and I carried her out to the car for the ride back to Connect. Praying for a restful and healing night and an active day of learning tomorrow.