Month: December 2013

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

Renovation Day 65. All quiet on the renovation front today as Randy worked from home again and all I did was finish readying the ensuite.

Today was team meeting day for Janet so I was out at Connect for 10am to join the conversation and Janet was waiting in the Den. I tried sneaking up on her but she’s getting smarter about that sort of thing and caught me before I got into the room.

Our discussion about and with Janet was a good one as she participated and responded appropriately throughout the hour. Brian, as Head Coach, led the meeting and provided reports from the coaches that couldn’t be there. Mary Lou is changing the focus of her therapy away from Speech to Reading and Writing. Janet’s speech is now at a point very close to “normal” so it’s time to bring in some other skills. Wendy, Cognition Coach, is beginning a training program with Janet to help her memory and to plan and be responsible for her daily activities. Delivering the envelope yesterday was part of that and this morning Janet successfully delivered a birthday happy face lollypop to Brian without prompting. One of Wendy’s tools she will provide Janet with is a daily journal type of book. I hope to meet with Wendy before her plan is implemented to see if using the iPad would be more appropriate. Given the choice, Janet would default to the book but she admits her writing is poor and that she’s getting better using the iPad. We will go with whatever has the most upside for Janet’s future. Nurse Jen wants to reinstate the Self Medication Program with Janet. We tried this a few months ago with zero success and feel Janet has progressed to the point where she should be able to gradually catch on to managing her meds herself. This ties in nicely with Wendy’s plan too. Tez would like to see Janet using a cane as much as possible so as soon as he tells me what kind she should have we will go cane shopping. He also wants Janet to continue her work in the pool. I think that means doing a little more than swimming in the deep tank so tomorrow we are going to try some walking and balancing in the kiddie pool. Curtis thinks its deep enough and we know for sure it is reasonably warm. For a few months now, myself and other family members have used Heather’s upcoming wedding as motivation for Janet to start walking. My pitch was I want to dance with her there and she has been pretty positive about trying to make that happen. Today Tez made that an official goal for Janet. Unassisted walking by June! Its very exciting to have that be a real goal instead of just wishful thinking. The team believes Janet can do it and she certainly wants to. The big challenge is her right leg and I followed up on the AFO situation today and hope to have an answer tomorrow as to when we’ll have it. Janet is kind of holding out for that to arrive before really getting going on walking practice. I can’t blame her seeing how much her right ankle rolls now.

That was a full morning mentally for Janet and she hung in there really well. I went to work at the church for a bit while she did the rest of her Wednesday activities. She was watching Ellen when I got back and said she had gone for a bike ride, had lunch and watched soccer on TV. She was in a good mood and quite chatty so I didn’t rush her off to the gym feeling it’s OK to change up the pace now and then. One of the kids presented us with a little drama via text message this afternoon and Janet and I had a good long discussion about how to respond and our plan actually got some good results. I feel blessed to be able to have discussions like that with her as she always was a great parent.

With dinner done and things settled down around the house, Curtis and I took Janet upstairs for some walking practice. She worked really hard but was using a lot of negative self talk and didn’t have Big Country there to cheer her on so had a few frustrating moments. Hopefully that type of work can take place during the day when she has more energy and hopefully we can get that AFO soon.

X Factor had already started by the time we were done walking and with Janet being tuckered out from the hard workout she barely made it through to the end of the show. Praying for a night of deep and healing sleep and lots of energy for tomorrow.

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

Renovation Day 64. Randy continues to work from home while I readied the ensuite for operation and hung around while flooring guy did the last little bit of that work. The end is very near.

Janet was sitting up in bed, in the dark, trying to read her watch as I entered her room late this afternoon. I reminded her she has a digital clock beside her bed and she giggled and checked the time. It was past time to get up but she hadn’t slept at all so we discussed the day so far before starting phase two.

Janet says she tried to give that letter to Wendy this morning but didn’t know where to take it. I was too late getting there today to see any of the day staff so I’m not sure what happened but the letter is gone from her room and she says she tried and I think that was the point.

Tez worked with Janet this morning and apparently was a little upset that Janet wouldn’t go in the sling walker. It was explained to him that she’s scared of it and that Curtis and Tiffany and I have been walking her at the parallel bars with some success and he seemed OK with that. Janet said the work this morning was hard and her feet hurt a little.

Singing with John made up for the pain in the morning and Janet agreed it was fun as they sang a little with Big Country and a little on their own. I’m still hoping that a group of them will sing at the Christmas party Friday night. Janet and Big Country sang after dinner tonight and it’s so much fun to see the smile on Janet’s face and to note her happy body language when she’s singing. It’s awesome. Big Country had some words of encouragement for Janet tonight as he very seriously told her to stop saying “it doesn’t work” and “I can’t”. He explained that she can do a lot of things he can’t right now and I think that really made Janet think. Awesome moment.

Janet’s bike ride tonight was a personal best using level three for the first time and going the whole thirty minutes making 2.6 miles! She once again admitted the bike is fun. I hope to get one in the house before Janet comes home for Christmas so she can exercise there too and keep this progress going.

It was a little bit of a struggle getting Janet to the Shuttle after dinner but she cooperated in the end and showed Curtis and I some notable improvement. Her right leg extension has increased and the strength of that leg is far greater than a month ago. I used to have to hold her right foot and knee in place while she pushed or her leg would fall away from the push plate. Not tonight. All on her own. Hoping to feed off the success of the Shuttle we had Janet on the wobbly board for a bit afterwards and she was not impressed. She did manage a few shifts from side to side but was clearly too tired for any more. Good effort though.

Earlier in the day I had mentioned to Janet that we needed to complete her list of people she wants to give Christmas cards to and when we got back to her room after the gym she remembered that and suggested we do it then. An impressive display of her short term memory coming back. That took us until it was time to watch The Voice and sadly for Janet her guy was sent home and my girl was voted safe so I get another Blizzard from Janet. Yeah!

This was a very solid day for Janet and I pray for more of the same tomorrow.

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

Renovation Day 63. Another work at home day for Randy while I put up some towel bars and a decorative shelf and cleaned the kitchen area. The last bit of vinyl planking arrived today and will be installed over the trap door to the crawl space tomorrow.

Janet was hanging with Jess in the living room when I got to Connect this afternoon. She was bright and cheery and excited to tell me she had worked with Wendy this morning testing her reading comprehension. Janet said she didn’t do very well but knowing Janet, I’ll wait till I hear from Wendy before coming to any conclusions. One part of the test is still in effect as Janet has to remember all on her own to deliver an envelope to Wendy in the morning. Janet seems determined to pull this off and has the envelope ready on her bedside table. I think Janet’s comprehension has improved substantially over the last couple of months and expect her to do respectably with Wendy. Unrelated, I asked Janet to type a reply to an email from her mom and she did so without hesitation. I never once had to help her with spelling and only had to help her locate some letters on the keyboard. She never once complained that she can’t do it and found maybe thirty percent of the letters completely on her own. High five.

The first order of business after the daily recap was a bike ride. Jess had Janet in the gym this morning for a lot of stretching work and range of motion stuff on her legs. The bike ride tied a personal best and I think Janet is ready for level three if I can sneak that on her.

We had a nice Skype chat with Heather just before dinner and Janet excitedly told her of our party Friday night without prompting and of singing along to The Sound of Music. She needed a little reminder of that one but laughed a lot about knowing all the songs.JanetSuzanneDedicationParty

Tiffany helped us at the parallel bars after dinner with Big Country cheering Janet on. Considering the lack of walking over the last four days and no nap today Janet did quite well. I noticed a tendency to get out of rhythm from time to time and she was a little fast to give up on herself. I think to really make headway on this walking thing Janet needs to practice daily and with the AFO which hopefully will come soon.

I warned Janet tonight would be hard and I didn’t think she’d go for the Standing Frame when I mentioned it but she did and got a good stretch for forty five minutes while we watched The Voice. She seemed to have a natural let down as soon as the show was over and asked to get ready for bed so I could read a little to her before lights out. I don’t think she made it three pages before she was out and didn’t even stir until I was all packed up with my coat on ready to go. To me that’s a sign of a productive day. Janet had good physical and mental workouts today and I pray for similar success tomorrow.

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

Renovation Day 62. I think I was a little ahead of myself yesterday in giving Randy the day off. I was in Sunday mode but it was only Saturday so I suspect he was working from home on cupboard doors and such. Hopefully he took today off! Janet and I started to decorate a little then she decided she didn’t want to hang the pieces we were considering so down to the crawl space they go.

Today started a little earlier than yesterday with Janet willing to get up but not that thrilled about it. Her energy level was a little low all day and I’m not sure why. Our morning included a nice Skype chat with Mary/Gaga during which Janet communicated very well and was happy with how she did. I challenged Janet to make her own coffee this morning and she did so with minimal coaching. Our chores were completed in time for the Seahawks game and that is how we spent our afternoon. Like I said, Janet’s energy level was a little low so she wasn’t into cheering so much during today’s game and I think that was a contributing factor in the loss.

I suffered a bigger loss than the Seahawks today as a piece of Janet’s clothing finally beat me. We attended a turkey dinner for everyone in the complex this evening and Janet wanted to wear her new dress again. It was a challenge putting it on her for our party Friday but we were successful but tonight it beat me altogether. For now I’m saying it shrunk just enough in the wash and it wasn’t my incompetence that caused the fail. It did spoil the evening a little as I was not a very happy guy after battling a dress for half an hour. Janet said she had fun at the dinner and we did meet some nice people there but it was a little weird and old. Still good to go as I learned I will be assisting with the next event, a wine tasting in January. Word travels fast!

Returning to Connect Janet asked to get ready for bed then have me read Open for a little while. That was a nice way to calm back down for both of us and I found it very hard to leave the room for the night. Part of me gets very used to having Janet at home, especially the new one, and part of me wants her to keep working hard at Connect to get better. I know the latter is what she needs still and the prospect of Janet being at home full time is a little frightening right now but having to say goodnight and drive thirty minutes away sucks.

Praying for a night of restoration and lots of energy for a productive tomorrow.

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

Renovation Day 61. A day off, I hope, for Randy. A day of decorating and organizing for Janet and I.

Our house finally felt like a home Friday night when it was full of friends and it felt like a home this morning as Janet and I slept in big time. For once there was nothing scheduled until church in the evening so we took our time getting up and having breakfast with Janet admitting she didn’t wake up at all overnight. Quite the change from the “terrible” sleeps she used to have. In fact she was sleeping so quietly at one point I had to make sure she was still breathing. We both were very happy to see the sun streaming through our windows this morning and noticed how nice and bright the house is even with no lights on. Home.

Now that most things are unpacked and in an area where they belong it’s easier to see what we have and where it ought to go. Janet was eager to go through the entire house section by section and rearrange things as needed. She made some good decisions and let me make a couple as well. Not wanting to stop for lunch she chose spots for a few more pictures in the bedroom as she was starting to fade a little. That somehow re energized her though and after a late and light lunch we hung out for a bit before venturing out in the cold to go to church.

The music at Trinity this weekend is provided by Greg Sczebel, one of our favourites, and the first Christmas music of the season for us. Janet sang loud and stood for a long time. We had nice long chats with a lot of people after the service and didn’t leave the building until 7:20. It’s not often I can get away with that with Janet but today was going at such a nice pace that even she wasn’t in a hurry to move on.

Janet’s favorite all time movie is The Sound of Music and tonight we watched the live television version starring Carrie Underwood. Going in I was more interested to see how NBC would manage to pull it off live but as soon as the first song started and Janet joined in singing along it turned into a somewhat emotional experience bringing back a lot of memories involving Janet and music. Kiko would sing to Janet when she was super sick and get sometimes no reaction from her at all. Then one day she sang along to Do a Deer and her first expression of real emotion was crying when I played I Won’t Give Up by Jason Mratz. Music is a powerful thing and the joy I saw and heard in Janet tonight was heartwarming. She knew almost every word to every song except the new ones and had lots of intelligent comments afterwards about the story, the characters and the differences between this production and the movie. Loving it.

Praying for another night of deep and healing sleep.

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

Renovation Day 60. The electrician was here first thing this morning and finally completed the electrical work! Randy was here too and put in a couple more drawers, re installed the bathroom mirrors and built a wheelchair ramp at the garage entrance. A few weeks ago I had mentioned to the Strata my concern about condensation on some of the windows in the mornings. Valley Glass came by this afternoon and measured for the replacement of two of our windows and maybe more depending on what the Strata thinks. A good day of progress.

Because of the busy morning we were up early and its a good thing too. Once breakfast was done Janet and I started getting the place ready for our house dedication party tonight. Janet was a good assistant all day doing a variety of tasks from sorting to decorating, helping to cook, arranging furniture and cleaning.

We made a run for a few last minute groceries and to pick up some macaron from Sandrine. Janet hadn’t seen Sandrine for quite a long time and they had a brief but warm reunion with Janet saying to me with a big smile afterwards, “she’s really nice”. And she makes awesome desserts!

Janet faded soon after our late lunch and called her own nap time wanting to be as awake as possible for tonight. That was a good call as she slept for two hours and I think would have gone more if I let her but it was time to get really busy. There was still food to prepare and wine glasses to put out and Janet had to get into her new party dress. Despite our best efforts we got way behind schedule and with thirty minutes to go and Janet’s dress half on, the gate phone rang. Thankfully it was Courtney who went to work right away and saved our butts big time.

Janet was super excited about people coming over tonight and when the first folks arrived she opened the door and greeted them with an enthusiasm I’ve not seen in a long time. Her eyes sparkled all night with only a few moments where I noticed things maybe overwhelming her a little. According to Janet she liked all the people that were here tonight and they are “very nice people and fun, and our new neighbours are all very nice too”. It was an enjoyable evening and is hopefully the first of many more.

Still pumped up from the party Janet took a little while to wind down after the last guests left. We opened the cards and gifts that some people brought then watched a little TV until yawning became the thing Janet was doing the most of.

I feel tonight did Janet a lot of good. She was shown how a lot of grown up intelligent people love her, how many of those have been beside her since she got sick and how blessed we are to have a home with which we can welcome our family, old friends, new friends, and soon to be friends. Praying for a night of deep and healing sleep.

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

Renovation Day 59. Randy continued his work from home routine getting cupboard doors ready for install. I hung a couple pictures this morning before meeting up with Janet.

Janet was already cold today before hitting the water for her swimming session so the initial shock wasn’t nearly as dramatic. Sticking to the deep pool again, Janet had her strongest swimming session ever today. There were a few lengths where I had to really work to keep up with her and her rolls from back to tummy to back were outstanding. She seemed somewhat accepting of my praise afterward and said she’d like to be a good swimmer again and wishes her right arm would work. Maybe it will but if not, she’s still a really good swimmer.

I think it was pretty obvious Janet needed a haircut today.
JanetB4Hair
Ya think?

After a quick lunch stop I took her to see Chelsea to see if she could do anything with Janet’s mop. I was hoping for something radical like Demi Lovato’s neon blue hair but conservative Janet held true to form and this is the result.
JanetChelseaAfterHair
Cute, clean and manageable. Thanks again Chelsea!

We did a little grocery shopping on the way home then started to plan our evening with which I’d hoped we would prepare for our House Dedication Party tomorrow. Janet was in clear need of a nap however and that cost us almost a couple of hours as there wasn’t much of anything quiet that I could do while she slept. When she woke at five thirty she had a hard time believing it was that late. Time flies when your snoozing.

After dinner we managed to check a few things off the list and knowing Janet really wanted to watch X Factor I called a stop to the work so we could do that then get to bed at a reasonable time knowing tomorrow is busy. Janet stretched out nice on the chaise lounge again and was very engaged in the show and thrilled we didn’t have to watch the commercials. Both of our contestants are out of the competition now but we will continue to watch.

Janet is figuring out her bathroom routine here but is having a little trouble using the bedside transfer pole to stand up. I think it’s because it’s on the opposite side from every pole she uses at Connect but part of it may be her reliance on her left arm. She tends to pull herself up a lot instead of pushing up with her legs. We may need some lessons in standing and sitting technique to get her back on track. Janet says the bed seems really comfy today so we’ll see how that goes over the next three nights. If she’s still saying that on Sunday I think we’ll keep it.

Praying for a night of uninterrupted sleep that provides lots of energy for a busy day tomorrow.

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

Renovation Day 58. Another work from home day for Randy. I spent the day at Trinity helping the team there. Apparently Christmas is coming soon and there’s a set to be built.

Janet once again was cozied up in bed when I got to Connect and once again she never made it to the gym during the day shift. This time it was because they went on a field trip. Aberdeen Hall Prep School invited the residents to a special Christmas concert put on by the pre school kids. Janet was right back in her natural environment and the kids recognized that and gave her lots of attention. She said it was a lot of fun and even Wes sang a little. At the end of the concert the children gave out arts and crafts pieces they had made to whoever they chose. Guess who got the most? JanetPreSchoolBling

Clearly happy with that experience Janet was reasonably accepting of having to do her exercises tonight and started with the bike again. Singing and smiling she pedalled her way to a new personal best of 2.5 miles in thirty minutes at level 2.5. High five!

After dinner Janet surprisingly chose to do sling walking over the Shuttle. We discussed with Jess and Curtis the pros and cons of the sling walking with me expressing concern over Janet’s fear of the thing. We decided to give it one more try but while Janet and I were waiting for Curtis to finish instructing Wes I had Janet try and walk along the parallel bars like Willie was doing yesterday. She did very well and with Curtis and I assisting she made it down and back twice, getting better at the technique the more she did it. Curtis held her hand in front of her to discourage Janet from using it as a crutch and I braced her right knee as it tends to flex outwards when weight is put through it. Janet is on the list to be fitted for an AFO which will support her in that way and we hope it can be made soon as that will give Janet more confidence and ability to use her right leg. Fitting will take place at KGH as soon as the doctors get their paperwork in order.

Walking pretty much exhausted Janet so we spent a nice quiet evening catching up on emails and watching X Factor. Praying for a night of deep and healing sleep and a willingness to work hard tomorrow.

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

Renovation Day 57. Randy worked from home today while I hung a few more pictures and cleaned some areas up. I was also able to retrieve our wine and spirits from Barb and Gary’s house now that we have a place to put it. Thanks for looking after it you guys!

Janet was all snuggly in bed still when I got to Connect around four. Her day had not been as physically demanding as I had hoped but she was tired from some mental exercise. She attended a group meeting this morning which seems to be helping her come to terms with what has happened to her as I asked her what she talked about there and she said, “why I’m here, because of my aneurysm, X Ray, last year”. Made me laugh but also proud that she could say that. Unfortunately because of other things going on in the house that meeting took Janet’s gym time away which meant she had a very busy evening with me.

Allowed to choose the order of her exercises it was off to the bike first where Janet put in a solid performance while enjoying singing along to some familiar songs on the radio. Dinner provided a break and a chance to build some energy but the best item on her plate for that she’s decided she doesn’t like anymore. Janet used to gobble up any Quinoa dish but is now adamantly saying no to it. Too bad, because its really good for her.

Next up was sling walking and when Janet figured out what she’d gotten herself into she was none too happy. Big Country and Willie were in the room with her, Curtis and I and they cheered her on to the point where she worked really hard and showed good improvement from the last time I saw her doing this. Her right leg requires assistance still and Janet needs to trust the sling more but she’s getting there. To help her gain some trust we let her hang in the sling and try to get back to her wheelchair from about ten feet away. She made it but we don’t want to encourage doing that, we just want her to know she can’t fall.

The last exercise of the day was in the form of the Standing Frame and Janet stood very straight and strong for forty five minutes earning a dessert of mandarin oranges and Tootsie Rolls as we watched The Voice. That was pretty much the only time she stopped in the six and a half hours I was with her today and a lot of her work was hard. I had left a note for Garrett and Jess that Janet was not using her wheelchair footrest around the house and she didn’t all day. I thought all she could handle was the short trips from her room to the kitchen or living room but she went once all the way to the gym then again even farther to the parallel bars for sling walking. Of course there was lots of complaining and saying “I can’t” but she did it and is getting better at it already. Janet is not propelling with her right leg at all but is managing to move it in concert with the left one. A big improvement.

All of Connect was talking about Janet’s singing session with John today as Big Country and Kieran joined them for some Christmas Carolling. Janet said it was a lot of fun and those that I talked to that heard them said they were pretty good. Hopefully they will perform at the Christmas party coming up in a couple of weeks.

Praying for a night of uninterrupted and healing sleep that provides Janet with lots of energy for more exercises tomorrow.

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

Renovation Day 56. Randy was here for a good chunk of the day putting the finishing touches to a lot of the drawers. Janet, Laurel and I did a lot of decorating. The house is really looking like a home now.
Hutchdecorated

Janet woke up this morning feeling good but complaining about being a little sore. I think the mattress we got is too soft so I’m going to see if we can switch to something firmer. Janet also finds it hard to adjust her positioning in bed. I thought it was mostly because I had her on the opposite side from what she’s used to but we tested the other side this morning and found the same result.

After breakfast we all got started emptying the last few boxes and filling shelves. Laurel was a big help in hanging paintings and pictures with Janet making good choices on what goes where. It was steady work for the balance of the day and Janet hung in there and contributed the whole time. She did have one lapse in judgement when we unpacked a little statue and I claimed it was from her mom and Keith and she thought she bought it. We put a Blizzard on the line and called Mary/Gaga to settle the bet. I won. Janet was a little frustrated with losing but showed how much she’s thinking these days by commenting that she has no money and asking how she’d pay for a Blizzard. Laurel and I assured her that she has money, our money, and she seemed fine with that for now. Janet has raised this concern before and even asked if she should get a job soon. It would be awesome if she got well enough to work at something one day but I reassured her that she doesn’t need to work.

All the thinking that goes into decorating wore Janet out a little and she agreed to a nap before going for an early dinner so we could drop Laurel at the airport. Janet is always sad when the kids leave after a visit, especially a short one like this but Laurel will be back for Christmas in a couple of weeks and that allowed Janet to hold back the tears.

Our plan upon returning to Connect was to watch the Seahawks game but since they were dominating the Saints right from the start I convinced Janet to get in a bike ride then watch the second half. Her ride was decent, breaking the two mile mark and pedalling at level 2.5 the entire thirty minutes. A pretty good warm up for what I hope will be a strong day tomorrow.

The football game was a blow out so we watched The Voice with Wes and Kieran with Janet being pretty quiet as she wound down from a busy weekend. Praying for a night of deep and healing sleep and lots of strength for an active day tomorrow.