Janet, A Success Story. September 7. #TSJ LOUD

It feels like forever since I posted on this blog so this may be a little wordy. Janet and I had a great almost week together at home and on the road as this seems to be the summer that never ends. That’s a good thing.

Janet went for her Botox appointment last Wednesday morning and tolerated the needles well. Dr. McCann is happy with her progress and will keep her on a four month rotation. It was clear we need to keep treating Janet’s right hand finger flexors as well as her right hamstring. Dr. McCann also gave Janet a referral to an outpatient physio program that is run out of the local Rec centres as opposed to the hospital so we will see if that will work for her once she’s home full time.

The first stop on our road trip was Bellingham Washington. The idea was to break up the driving to the Seahawks game on Thursday to allow for a rest period for Janet before the game. Janet was a good passenger for the five hours it took to get to our hotel with a few bathroom breaks along the way and a very short wait at the border. Driving to Seattle Thursday was a breeze with no bathroom breaks during that two hour trip and we were pleasantly surprised to find our room ready for us even though it was only 12:30. Janet agreed to a rest before going out into the football madness.

Quite a few years ago Janet went to her first Seahawks game and she didn’t really like it much as it was loud and “mean”. A lot has changed since then and Janet is a true fan who joined right in on all the game day fun. Even as we arrived at our hotel the streets were full of fans heading to the pre game festivities so by the time we joined them it was hard to manoeuvre Janet in her wheelchair without running into someone. Janet was amazed by the number of people in the area and marvelled when she first saw the stadium. The weather could not have been better but to be safe Janet wore jeans and sat on a little jacket that she ended up wearing for the last ten minutes of the game. Janet chose to enter the stadium early and watch the teams warm up rather than stay in the crowds outside. Good call as we were able to familiarize ourselves with the washrooms and I gave Janet a good tour of everywhere she could go in the stadium. She declined to walk down to field level though. Maybe next time.

Ready for some football!

Ready for some football!

The game itself was so much fun with Janet getting right into it being as loud as she could. I think she was as entertained by the crowd as much as she was by the game which she spent most of the time watching on the giant video board as it was hard for her to sort out what was happening on the field. As opposed to her first game Janet enjoyed the action and still can’t get over how loud the crowd is. It was a great experience and we may have to start a tradition of going to the home opener every year.
Our view of the action.

Our view of the action.

It's LOUD!

It’s LOUD!

This video will give you a little sense of what it’s like at the game. There’s nothing like being there though.

We took the long way home on Friday, after spending some time on the Seattle waterfront and at a favourite beach of ours in Bellevue then taking I-90 over the mountains before heading north to home. Janet had a tough time after leaving the beach as she was tired and never really got control of her need for bathroom breaks so that made for a long trip that also wasn’t as scenic as I had hoped.

Everyone has a pic like this right?

Everyone has a pic like this right?

Meydenbauer Beach Park

Meydenbauer Beach Park

With just enough rest Friday night we welcomed some long time friends of Janet’s to the house Saturday afternoon. Diane and Blake were in the area and stopped by for a nice visit that meant a lot to Janet. I could see the wheels turning as the discussion centred around kids and friends. After church Janet insisted on watching the finale of So You Think You Can Dance as she wanted “to see my guy win”. He did! I owe Janet a Menchie’s treat and very proud of herself for picking the winner. High five! To cap off the weekend Courtney hung out with us this afternoon to watch some tennis and get us caught up on her life. Always nice to have her around.
A nice visit with friends Blake and Diane.

A nice visit with friends Blake and Diane.

Another summer vacation is over for Janet and there were no complaints about this one not being relaxing enough and there wasn’t much protesting about returning to Connect tonight. Janet did a four hundred meter walk this afternoon and on our way back from the beach I was able to demonstrate the speed she needs to go to get 400 meters in six minutes. She was rocked by that a little and I think will put in a solid week of work as she wants to be home full time soon.

Janet, A Success Story. May 7. #TSJ

Getting needles stuck into her is one of Janet’s favourite things. Not. Yesterday was one little one for a blood test, today was multiple large ones for Botox. Both for good causes but neither very pleasant. Dr. McCann administered today’s treatment at his office which is only a ten minute walk from our house so we walked. Janet thought I meant really walk at first but that would be a little extreme. Janet did walk into the office though and Dr. McCann made sure to point out how much Janet has improved since he saw her last. We changed the plan of attack a little today and left Janet’s right fingers alone as they are looking pretty good. That part of the dosage was targeted at Janet’s right elbow in hopes of limiting its pronating. The right leg treatment stayed the same and with Janet’s overall improvement Dr. McCann wants to space out the treatments more so we are now every four months instead of three. I asked what the indicator would be for the ending of treatments and he said Janet walking with a cane for one or two blocks. I explained Janet doesn’t like the cane so she’d be walking free style and he said great. Janet then gave a little demonstration of her free style walking by putting four steps back to back. On our walk home I pointed out where she’d have to walk to from our place and she asked if that was supposed to be some sort of incentive. I’m hoping that was a rhetorical question.

Fresh from a nap Janet enjoyed some time in the sun before going to SheLife. We arrived on time but as I turned the last corner into the parking lot Janet tried to place her water bottle back in its holder and missed a little so the entire contents ended up in her lap. The only option was to race back home to change. That prevented her from being able to walk in as I was hoping she would to work in that Botox. Oh well. This was the last session at the church as next week Heidi is having her table over to her house then SheLife is over until September. Janet was excited to tell me she got to speak during their discussion time and reiterated how much she appreciates everyone there.

When we got back to Connect it was late of course and Janet needed a bathroom break so she missed that opportunity to walk as well. I guess its OK if she gets rested up and starts fresh tomorrow. Praying for a long night of deep sleep and an abundance of physical activity tomorrow.

The Team Save Janet Report is Out! #TSJ #Botox

Working out in the gym with a smile on her face is where I found Janet this morning as she was counting out her reps for one of the new exercises designed to increase control of her right leg. I was early to take her to the Botox appointment so I went to chat with nurse Jen and Wendy while she finished her workout. Jen agrees that Janet is doing really well with her toileting lately and wants to move very slowly towards stopping the laxatives Janet currently gets. The dietician is checking with Janet every couple of weeks and is in control of this part of things. I find myself wanting to end as many drugs as possible as quickly as possible for Janet but that’s not always best for her. I will be patient and enjoy the success Janet is having. Wendy agreed that Janet is making progress with the iPad but isn’t fully grasping what she’s doing. That is one of the trade offs of this method of teaching as Wendy wants Janet to not be thinking of how to do the simple things like turn the iPad on but it makes it hard to add more complex tasks right away as Janet doesn’t understand what she’s doing. Patience again and we decided to try and make the iPad more of a focus of information for Janet so no more white board in her room. The staff and I will communicate with each other and Janet using the calendar in Janet’s iPad so she has more reason to use it throughout the day. It would be great if more of you would drop an email to Janet more frequently. I know she doesn’t like to type replies but dictating them is kind of fun for her and that is something all of us can help her with. She just needs more, short, emails to reply to. if you are willing.

Dr. McCann took his time with Janet today, really wanting to make sure the best areas are targeted with this latest round of Botox. Janet was a little nervous heading in but appreciated the attention and opportunity to say how she was doing and what hurt etc. We agreed to ignore the left leg, inject for the right fingers and wrist and especially the right hamstring and the muscle that controls the side to side movement of the foot. Don’t ask me what it’s called. Janet was a trooper and I think we hit all the right spots. Dr. McCann remains “surprised” at Janet’s level of progress and still has an image in his head of when he first met her and it’s not a pretty one. I think she was somewhat encouraged by his comments.

We did a little shopping before going home and Janet propelled herself around parking lots and stores really well and to the point of tiring. So much so that she called her own nap time shortly after getting home and slept for an hour and a half. A refreshed Janet did an outstanding job helping with dinner and was a lot of fun the whole evening at home, singing and just being happy. Her transfers were consistently better today and she knew enough to say no to a glass of wine with dinner, saying, “I have to go back to school tonight”. Back at Connect I noticed a little improvement in her one legged bike riding and she got a good hamstring stretch using the Standing Frame.

A very busy and successful day ended with some reading of Open and we got quite a few chuckles tonight and Janet stayed awake for the entire session. Praying for an energetic and productive tomorrow.

The Team Save Janet Report is Out! #TSJ #memory

My day with Janet started with a nap. She had just gone to bed fifteen minutes before I arrived so I snuck into her room, but not very well as she woke up briefly to greet me then had a half hour snooze. Before getting up I tried to get the run down on her day so far but Janet has been having a little trouble with her short term memory lately and she wasn’t able to tell me much without a lot of prompting. I’m not sure what’s going on there and she is definitely worse when tired. It also seems like she gives up a little fast too. I’ll try and talk to Wendy about it this week.

Janet did report that she did everything in the gym this morning. Upon further examination I discovered she only did the Shuttle and mat exercises so after counting some pennies and eating a big dinner Janet reluctantly agreed to a little work on the bike. We tried a few different seat positions this time in an effort to give Janet the best chance at success. She’s a little down on the fact that her right leg doesn’t work that well and that is affecting her efforts on the bike. We found a position where Janet is able to get a few inches of pull up on each revolution and I think she can gain strength enough to complete a revolution soon if she keeps working at it. I’m also hoping for some help from tomorrow’s Botox.

Now that the Aussie Open is over there is nothing on TV and that turned out to be good as Janet spent over half an hour singing with Big Country. They took turns choosing songs from his iPad with Janet doing most of the singing on her choices and Big Country singing most of his. Janet was very supportive of his efforts and really encouraged him along in kind of a mother like way. Following that, Janet asked for her nails to be done and chose Seahawks blue as her colour. Honestly, she chose it with no influence from me at all. After getting ready for bed I read some of what is a very interesting chapter in Open to her but she was sleeping fifteen minutes in and I had to stop at a critical point. Janet denied falling asleep but I know snoring when I hear it.

Tomorrow is Botox day and I have high expectations for this round. If Dr. McCann is onboard we will focus on the right leg and arm, leaving the left leg alone. Janet doesn’t know it yet but as usual her exercise routine will ramp up after the injections too. Fun times.

Praying for a night of deep and healing sleep that brings a positive attitude and a willingness to fully participate in tomorrow’s activities.

The Team Save Janet Report is Out! #TSJ #SheLife

Today was the fifth anniversary of Connect Communities and the whole place celebrated with a little party that Janet attended. I think the birthday cake gave her enough of a sugar high to keep her going the rest of the day. She was in a good mood when I arrived and looking forward to SheLife at Trinity this evening. Jess reported that Janet covered off everything in the gym this morning without arguing. She wasn’t thrilled about any of it but she did it. There was an attempt at a nap that turned out to be just rest time with some music on and that seemed to be enough as Janet was pretty bright the whole time I was with her today. We had a chat with Brian to ensure we are on the same page as far as the next round of Botox goes. He feels that focusing on the right leg with a little attention to the right wrist and fingers is a good plan and is pleased with the improvements Janet is showing.

One of the benefits of SheLife starting at six thirty is we get to go out for dinner beforehand. Dinner at Connect is not typically served in time to make the twenty minute drive in afterwards so Janet gets a treat. Tonight she selected sushi and after a few miscalculated attempts got her chop sticks working nicely and said she was “stuffed” as we made our way to the church. During our dinner Janet remembered by the date that it was her sister Leslie’s birthday today and gave her a quick happy birthday phone call that contained as much laughter as it did talking.

Janet propelled herself all the way from the car into the church then to the room SheLife is held in and is getting more and more confident out on her own all the time. Heidi graciously accepted Janet at her table again as Janet had hoped and by all accounts at the end of the evening this will be a good activity for Janet. She loves being in a room full of women talking even if she doesn’t say much herself.

After her evening routine was complete we read for a while before saying goodnight after a successful day. Praying for a solid night of sleep and lots of energy for tomorrow.

The Team Save Janet Report is Out! #TSJ #independent

Renovation Day 37. Flooring guys are making huge progress and have only the Den/second bedroom left to do. I’m sleeping on the new floor in the master bedroom and have been able to ditch the tarp I had under me to protect the mats from being punctured. The plumber was here today as well and will return Friday to finish his part of the job. Randy was busy off site building vanities and shelves while I was able to do more electrical stuff.

Janet had an early appointment at KGH with Julie to adjust her splint so I went out to Connect to get her for that. Jess had her ready and Janet was bright and cheery and knew what we were doing. Julie was impressed by the effect the Botox has had on Janet’s right wrist and fingers. They are very relaxed and easily stretched so she was able to reshape the splint to a fairly flat profile which happens to fit in the sleeve of Janet’s new jacket. As planned.

We stopped by the house quickly so Janet could see the new floor. She’s very happy. I returned her to Connect so her and Jess could make Apple Danish for SHElife tonight. When I returned at four Janet was still in bed, she said she’d been there a long time but hadn’t slept. According to the staff notes, she went to lay down at one and Janet said she didn’t ring for help as she didn’t want to bother anyone. Gotta work on changing that. She very excitedly told me about a little test Mary Lou gave her today during Speech. It sounded a lot like the one Connie gave her way back when she first went to Rehab. Mary Lou had given the same test when Janet arrived at Connect almost eleven months ago and she failed it miserably. Janet was very proud to tell me she “got them all right today” and patted herself on the back. High five!

Before leaving for the evening Janet managed to squeeze in a short and outstanding bike ride, again patting herself on the back. The successes continued over dinner as Janet had excellent control of her chop sticks tonight. All reports are that SHElife was good and Janet felt she contributed fine and enjoyed the discussion. So ends another busy and successful day. Praying for a night of deep and healing sleep and for Janet to gain complete control of her right leg.

The Team Save Janet Report is Out! #TSJ #Botox

Renovation Day 29. Lots of painting and prepping for more painting. Since some of the ceilings are finished I was able to install some of the LED lights. Looking good.

Kieran had Janet counting reps for him as he tried to do some crunches in the living room when I arrived at Connect. He apparently thinks its cool Janet can count. Old news. Tez stopped by as we were chatting and arranged to spend time with Janet and I Thursday afternoon to develop a plan of attack for this latest Botox round. He mentioned the focus will be on standing and strengthening her right leg. Brian mentioned that Dr. McCann is using Janet as a case study during a dinner for Botox type professionals tonight. Janet’s positive response to Botox treatment has been impressive and its cool her story will be shared but I think she and I should’ve been invited to the dinner in honor of that. Don’t you?

Janet chose to read Not a Fan before dinner instead of going for a bike ride, a decision she later regretted. Once again we had a very interesting discussion on what we read and I think Janet will be able to participate well at SHElife tomorrow. While the final preparations for dinner were being made I noticed Janet using her increased social skills to talk to Wes and Kieran instead of staring blankly into space like she used to. She looked totally comfortable and at home sitting at the table in a real chair conversing with them about how much more she eats than Wes. She was teasing him and he was loving every minute of it. Janet’s conversational skills were put to further use after dinner when she struck up a half hearted argument about going for a bike ride. She gave in quickly and put in a very solid performance and agreed she does better before dinner so will try to do it that way more often.

Praying for rest, strength and confidence.