An active afternoon it was. I could tell Janet had been in Houdieno mode while I was gone but she was asleep when I arrived. When she woke it was time for a little stretching then a phone call to Mary/Gaga. Janet listened intently often looking directly at the phone. She likes to hear her mother’s voice. A walk in the sun was next and in the essence of time I drove off the ward and to the beach. I did get Janet to push the elevator button though and she did. I guide her hand to it but she can now get enough force behind her finger to light the button. It was a beautiful afternoon here and only a handful of people at the beach. I could tell Janet was loving the warm sun. She was also the most comfortable in the chair I’ve noticed for a long time. She still grabs for her left knee but not with the sense of pain and urgency of before. On the way back I challenged her to drive all the way from the security desk in the Centennial Building to the first bench in the hall. About fifty feet. She did it non stop. High five! I drove a little ways farther down the hall and challenged her to go the rest of the way to the door. About forty feet. She did with only one short pause and did not take her hand off the wheel. High five! Also on this outing for the first time I noticed Janet grab the wheel herself. I have always had to guide her hand to it so this is a good sign she is gaining confidence. Back in the room it was past dinner time (oops) so into bed she went. I suggested we weigh Janet then so we did. A slight loss from last week but very slight so I’m not concerned.

I expected a nap during dinner and was wrong so I brought school into session. She loves iBlackboard. She scribbled unassisted a few times then I tried getting her to write Y, X, a circle and a check mark. Pictures of her attempt at Y and X are attached. I think she did well considering. She totally has the motion for drawing a circle but as you can see she just doesn’t want to stop. She only had mild interest in the ABC song today and none in the Naming Therapy. No luck with signing either but the drawing more than made up for that.

I could sense her starting to tire and the sun was setting so I decided to read some Anne of Green Gables. Aren’t I brave? I’ve never read it before. Too girly but I have to admit it is fun to read. Love the style and the word choices. I’m amazed at how into it Janet is. She had her head on my shoulder the whole thirty minutes and I guess listened because she didn’t fall asleep. Cool. I got her changed for bed, she gave me a goodnight kiss and I left feeling very happy and encouraged by everything that she did today.

Thanking God, thanking Team Save Janet and praying for complete healing and a productive day tomorrow.

Some things are worth waiting for.

Janet was awake when I came in this morning and was getting cleaned up. As soon as Naomi was done Janet was back to sleep. Till 10am! Think of the sleep in I could have had. I did manage to be productive while waiting and she woke up just in time for Tom’s physio session. He wanted to demonstrate the high tech sliding board to me as I had not seen it in action. It is a plastic board with a disc that Janet sits on and she in theory can slide herself from bed to chair and back. We were both in demonstration mode not expecting much from Janet as she had just woken up but she totally understood what was going on and how she could move herself. Once about half way across she could grab the arm rail of the wheelchair and she pulled herself the rest of the way. High five!(which she gladly gave to Tom btw). It’s more difficult going back into the bed but still good for Janet to try. I demonstrated the standing from sitting that I do with Janet and Tom was happy. So much so that he suggests we take her to rehab to try a couple workout sessions there. Apparently there is a “standing rack” down there that would allow Janet to stand in the position I had her in only on her own and for much longer. I can only hold her for a minute at a time. Tom is also wanting to see how Janet responds to the busy environment of rehab in hopes that the stimuli there might trigger some re connections in her brain. Praying that this is a foot in the door to rehab if she does well.

The good news continues as after Tom was done I took Janet for a drive around the ward in the little wheelchair. She did the best she’s ever done. On one stretch she went about thirty feet without stopping. She also did a lot of moving without me coaching her. High five!

So far this round of C diff. doesn’t seem as bad as the first round. I left Janet at 12:30 as she was napping during her lunch feed. Looking forward to an active afternoon.

What a “diff.” three hours makes! After returning from a lunch break and while Kiko was painting Janet’s finger nails it was announced that the C diff. is back. Ugh. Apparently the test results we saw from this morning were from a sample sent a few days ago and yesterday’s sample came back positive this afternoon. That means Janet was clear for a while but has recontracted. I suspect Dr. Sharko will put her on some med for it tomorrow and back to the gloves and gowns we go. Sigh.

The return of the C diff. put a real damper on the rest of the day which had been pretty darn good up until that point. Deb and Ramona stopped by the house on my break and left a nice care package. Thanks you guys. Totally unnecessary but very much appreciated and it’s so nice to have you on the team! After Kiko painted Janet’s finger nails I sat her up on the side of the bed and did some standing with her. She continues to improve at this, standing way more upright each day. She is also getting better at lying back down on her own, I help with the legs and aiming her for the right spot and she does the rest. Janet fell asleep around 5:15 and was still out just after six when I decided to go home. Once again as soon as I changed and leaned in to say goodnight she woke up. I very reluctantly left anyways telling her to get lots of rest and make that C diff. go away.

Praying for a restful and healing night and a day of massive improvement tomorrow.

C Diff. is officially gone! Yay!

No more gloves and gown! Test results came back negative so all that needed to be done was a detailed cleaning of the room. Janet was awake when I arrived after a reported very good nights sleep. I got her all stretched out just as the special cleaning lady showed up. She cleaned the wheelchair first then I got Janet into it and we went for a walk while the rest of the room got sanitized.
We found a nice warm sunny spot in the courtyard of the rehab area and Janet had a twenty minute sun nap. We then took a lap around the perimeter of
the hospital and ended up going down to the rehab wing. Dr. Main saw us and was very impressed and happy with Janet’s progress. It has been a month since he was Hospitalist on her ward. Still always amazes me how people see the changes in Janet right away. Cool.

Back in the room it was noon and past Janet’s lunch time so back into bed she went and Mirella plugged her in for lunch. As I said goodbye to go home for a bit, I asked for a goodbye kiss and got one! Happy day!

A pretty good visit with Janet today. She didn’t seem quite as bright but there were moments of radiance for sure and no naps!

I arrived shortly after two and got a little smile of recognition from her as she sat in her wheelchair. I moved her into bed so I could do some stretching. Her left leg and right arm are still problematic and as I tried to make a fist with her right hand she winced in pain. Surprisingly when I stretched out her right leg she actually cried. I took it easy on her after that and got her seated on the edge of the bed. Once she was sitting up straight her whole mood changed. You could see the lights coming on and her awareness improving. I stood her up a few times and noted she is able to stand much straighter than previous and really seems to enjoy that. Next up was the new wheelchair which hadn’t been used for a few days therefore today wasn’t her best effort but it was decent. We took a quick walk to the beach as I didn’t want her to be late for dinner. Janet was very aware of the people at the beach as well as the flowers we pass by on our walk. I often stop and let her look at them and touch them, this time she reached out without any prompting to have a feel and look at one.

Back in bed and plugged in for dinner I was expecting her to fall asleep, but no, wide awake the whole time. We used the iBlackboard, practiced sign language, played the abc song on the iPad, tried a few different things on the Naming Therapy app and tried to speak. She was not stellar at any activity but is quite interested in the iBlackboard and the Naming Therapy apps. We will keep practicing. I got one yes sign on command today but still not in response to a question. The best part of the visit was when I got two kisses on command! I got two because the first one was kinda awkward (as first kisses usually are). I didn’t expect her to actually do it and I was a little too far away to make contact but the second one I was ready as she moved in and puckered up. The sweetest thing about it was I asked her again half an hour later and all I got was a ” are you kidding” look.

Had a little chat with Dr. Price and he confirmed Janet did not pass the swallowing test. She needs to follow commands better to have a chance at it. He did agree to write an order for Dr. McCann to come and see Janet and assess her rehab potential. Pray hard y’all.

I tucked her in and headed home just after 7:30, she was finally getting sleepy. Praying for a restful and healing night and productive and active day tomorrow.

Laurel and Raju hung out with Janet for the first part of today before hitting the trail to cowtown.

Laurel gave Janet a good stretch then practiced sign language with her. That went well then Janet scribbled a bit on the iblackboard. Laurel feels Janet likes that app. She always has preferred old school stuff. Only a couple small naps for Janet before Laurel and Raj left just after noon.

Grateful for the opportunity to worship at Trinity this morning and welcoming some new members to the Team. Thank you Deb and Ramona for the promise of food for the freezer and I look forward to training Ramona on the range of motion exercises for Janet. If anyone else is able to visit Janet for thirty minutes or so at anytime and read or sing or tell jokes please let me know.

Looking forward to my visit this afternoon.

Many thanks to those that helped care for Janet while Laurel, Cam and I were away. Especially to Kiko who continues to bless Janet with loving attention and musical therapy. Congratulations on your first Physio session with her today Kiko! You are an invaluable part of this team. A huge thank you to Joel, Wendy, Twyla, Wayne, Kiko, Kyle and Nick for the thoughtful card of support and the gift cards! The iTunes one has been used to purchase an app for Janet that was recommended by the speech therapist. Laurel, Raj and I tried it out tonight and we feel it will be very useful and worth the investment. More info here. Naming Therapy

I love my wife. That’s all I can say.

Laurel and Raj arrived around 4:30 to find Janet very awake. They did a little stretching and some sign language practice with Janet doing well with the yes sign. Laurel read some Anne of Green Gables to Janet and there was one line that reads funnier than intended and Raj laughed at it which made Laurel laugh at it and they noticed a big smile on Janet’s face as well. Maybe we need to do some comedy therapy next. Their visit was very positive with Janet staying awake till about 6.

I arrived just after seven to a real pretty smile from my beautiful wife. One ongoing lesson from this ordeal is the reinforcement of “appreciate the small things”. A simple smile from her after not seeing her for thirty two hours was enough to fill my heart (and my eyes but we won’t talk about that). She was incredibly bright my whole visit and was following commands like crazy. Even with her nurse at snack time. I dare say Janet seems to really have stepped it up a notch or two these past few days. I’m really looking forward to my afternoon with her tomorrow.

Laurel and Raj are heading back to Calgary tomorrow where Cam is now as well. Praying for a safe drive for them and very grateful for the important work Laurel has done with her mom so far and for Raj being so supportive to both Janet and Laurel. Janet will miss Cam’s late night visits but maybe her sleep patterns will improve now 🙂

Really looking forward to tomorrow and thanking God for all we have been blessed with.

From Kiko

September 1, 2012 AM
Janet was asleep when I arrived. I started playing music softly to wake her up. First bit I spent wiping her face, brushing her hair, etc – general grooming. Then I stretched her out. My first experience 🙂 She did seem more loosened up after, which was great. After that she snored away softly. I took that opportunity to take off her nail polish (to see the white part of the nails that needed the trim) and trimmed and filed her nails. Didn’t get a chance to repaint – perhaps one of the TSJ members can do that when they visit, cuz Janet seemed sad that the pink nail polish was gone. I left just before 1:30 and told her to expect Laurel and Raj later this aft and Larry tonight.

A quick update before Cam and I hit the road. Janet was sleepy till 9:30 then had a quick change before Tom arrived to put her on the tilt table. She tolerated it really well and actually seemed quite relaxed the whole 35 minutes.

Looking forward tom seeing her tomorrow night.

I know you are all laughing at the picture so I will talk about that first. I DID NOT PUT THE BOOTY ON HER HEAD. Honest! I had put her into bed for dinner and put one booty on her tummy while I put the other on her foot. I knew she started playing with it and by the time I looked up to see what she was doing she had it on her head and was making it “just so”. I laughed so hard and scrambled to take a picture before she realized what she had done. With the picture taken I was able to laughingly tell her that is not a hat and she took it off. I laughed so much she actually smiled!

It was a very enjoyable afternoon with Janet. I really missed her yesterday and was happy she was awake when I came in. Brenda was finishing her visit and had been singing to her when Janet woke up. I coached Brenda through some basic range of motion exercises she can do with Janet then had a little chat with Christi and Arlene. Christi mentioned some redness on Janet’s coccyx and we noticed some discoloration around her peg site. I asked Dr. Price to have a look and he said her coccyx is a little red but not nearly like it has been in the past so no worries there. When he came in I asked Janet to roll onto her side so he could look and she did! Dr. Price said he had not seen a peg site go the color Janet’s is right now but feels its just a mild reaction to the silver that was put on it a couple days ago. We will watch it closely. Laurel was a little concerned about Janet’s cough today so Dr. Price had a good listen and says her chest and lungs seem fine and the cough is likely a result of her inability to swallow effectively. I asked about that and he agreed to order a swallow test as it has been over a month since the last one. I think Janet is close to being able to try some food orally but not quite yet. The test will be interesting. I also asked him about the C diff. and he was unsure of protocol at KGH. Christi later said they will send another sample to the lab and if negative we are good to lose the gloves and gowns.

Just as Dr. Price arrived so did Kiko ready to learn some range of motion stuff too. Kiko will stretch Janet out for us Saturday morning while I’m in Calgary and Laurel is in Vancouver. If anyone else has time to visit Friday afternoon or Saturday please do.

Janet and I went for a little stroll to the beach then up to the front of KGH. She drove her wheelchair a little bit but not as well as previous. When I told her it was time to go in for dinner she immediately released the brake on her wheelchair! She actually took the handle right off and had a good look at it. Back in the room it was into bed for dinner and of course the booty hat. Janet fell asleep shortly after dinner stated to I went home to load the car up for Calgary. Cam has done a good job of getting ready.

Laurel and I went back to say goodnight to Janet this evening and she was sound asleep. We got her into her PJ top and splint and left her to rest.

Praying for a safe drive to Vancouver for Laurel, a safe flight to Vancouver for Raju, a safe drive to Calgary for Cam and I, and a joyous day for Nancy and Jim Church as their daughter Gillian is married tomorrow. Praying also for Janet’s full and immediate healing.