Janet’s visit home today ramped up when Heather and Allan made their first appearance and were able to officially tell Janet of their engagement. I had told Janet of Allan’s intent to propose a couple of weeks ago and she was quite pleased with the news. When I told her she would see Heather today and asked what news she would have for her she said “that So and So was going to ask her to marry him”. We are thrilled to have Allan join the family officially as we feel he has been a part of it for along time already. Blessings to both of you!

Heather and Janet did some Christmas baking this afternoon in addition to some measuring spoon karaoke and some wheelchair dancing. She enjoyed the banter from everyone and hung in there enough to stay for dinner which I went and picked up from KGH. Chicken and gravy with mashed potatoes and puréed vegetables is what she got and she plowed through most of it.

My mom and I took Janet back to rehab and I gave her a light stretch before getting her ready for bed. She got quite chatty when we got to the familiar and quiet confines of her room. I think we need to be careful with the amount of “partying” she does.

Praying for a restful night and a fun family day tomorrow.

My mom and I arrived at Janet’s room this morning to find her in the process of getting washed and dressed. She had a nice loud “hi” for my mom, first time she’s heard Janet’s loud voice and pretty much the only loudness of the day.

Breakfast was a little slow and quiet but the room was buzzing and that may have had Janet a little overwhelmed for so early in the morning. Afterwards she Bam Bam’d her way down to the gym fairly well and was happy to see Moira and get on with some activities.

I drove mom out to see Connect and she gave it a passing grade. We met a staff member I had not met yet and saw Janet’s room. It’s in house C1 and was being readied while we were there. Seems like Connect is ready for Janet, I hope she is ready for them.

Janet was sitting at the lunch table when I got back to rehab and quickly said she’d rather have lunch at home when I asked her. We are here as I write and hoping she can stay for dinner too!

Dr. McCann did his Botox thing with Janet. Mostly in the right arm and shoulder as he is not convinced he could do enough to make a real difference in Janet’s legs right now. He did inject some into her right ankle as there is a bit of deflection starting there. If the tone in her legs persists over the next few months he said he would then try to Botox in a more concentrated form. Guess I have to trust that he knows what he’s doing.

We got to the house just after three this afternoon and Janet helped Laurel and Cam make some Christmas baking. Janet was very happy to sit at the table and help with mixing and stirring but mostly I think she really enjoyed being home with two of her kids. Janet F. came by for a nice visit complete with some yummy Christmas baking of her own and another scarf for Janet’s growing collection. They are really nice accessories that thanks to Jason I now know how to install on Janet. I went back to Rehab to get her dinner tray so we could all eat dinner at home together. Fish was on her menu tonight and she seemed to like it. She didn’t eat a huge dinner but she did have a large lunch not that long before. The visit home ended a little sooner than hoped for as Janet was having some toileting issues that needed to be addressed back at Rehab. It was just after seven by the time she was back in her bed so that was a pretty good outing. I gave her legs a little stretch before saying goodnight. Janet seemed happy with the busy day she had and is looking forward to seeing a whole bunch of family tomorrow.

Praying for a restful night and a happy day of visiting tomorrow.

Janet was getting ready for her shower when I arrived this morning and was in good spirits about it. She came back all smiley and warm and after getting dressed we headed for breakfast. Janet ate well, even trying two bites of cottage cheese. She did not like it but she tried at least.

There was no time to do anything after breakfast other than drink water, brush teeth and get to the gym. Janet greeted Moira with a smile and with a little prompting was able to tell her “supposedly we are moving Monday”. Moira of course had heard and agreed it would be good for Janet to have one last session with her Monday morning before moving. I left them to do their thing and went to do some of my things.

I got back at noon with the intention of bringing Janet home for lunch and to do some baking with Laurel. Jessica and Nathan were tinkering with Janet’s wheelchair trying to maximize the comfort for Janet. The chair we all want her to try hasn’t arrived yet so we’ll have to do that at Connect.

Connie wanted to assess Janet’s swallowing one more time so asked if she could stay for lunch. She was happy with how Janet ate and will switch her to a full puréed menu starting with dinner today. She also watched Janet drink water from a cup and was satisfied enough to allow Janet sips of water, coffee or tea between meals. Big steps.

During lunch I cornered Dr. McCann to find out when he would Botox Janet. He said today was his only chance.

So, here we sit waiting for Botox then we are going home to bake and have dinner. I’ll bring Janet back for bedtime. All these delays have been good as we are getting lots done and Janet actually had a little rest.

Looking forward to some Christmas baking.

Janet and Laurel were chit chatting away when I finally made it into KGH this afternoon. Janet was looking very cute in her hot pink Adidas jacket that Heidi gave her and she gave me a really good report on her day so far. I was impressed with how much she remembered and there weren’t a lot of the usual “nothing” or “terrible” answers. It took a little while and a few attempts to get her loud voice going but she did pretty good for a while then faded in and out the rest of the evening. We attempted a little inside walk before dinner. Janet seemed confused at times but also had moments of Steve McQueen speed. Laurel said goodbye after the walk and Janet and I got ready for dinner.

Cam surprised us with his presence just as dinner was served and stayed for a nice visit. Dinner was two portions of macaroni and cheese, soup and pudding. Janet ate all the mac and cheese and most of the soup and even drank a quarter cup of water from a cup afterwards. She said she “hates the whole thing” about drinking water so we need to keep encouraging her to do this so the peg tube can be removed.

Cathryn came out to see me and tell me Janet has been accepted into Connect and is scheduled to move there Monday. We discussed the fact that is Christmas Eve but Cathryn doesn’t think we can change that except maybe to this Friday but I think that’s too soon. I will speak with Jen at Connect tomorrow and see how we can make this work. When I told Janet the news and asked if she was excited to move there she said “not excited to move but will probably be ok once I’m there”. I have mixed emotions about it but am glad for a change, Janet will have been in hospital for 224 days on Monday.

The rest of our evening was spent opening some Christmas cards then getting ready for bed which included a light stretch. Praying for a restful night, an exciting day tomorrow and a smooth transition to Connect.

I went skiing for a little bit this morning so here is an update from Laurel on the day so far.

Update from Laurel:

When I arrived today Mom was still in bed as the nurses were late getting the patients up today. They soon came in and got her ready. Judging by their use of the Arjo with her later on, I’m pretty sure they were rough with Mom’s right arm, as its been sore all day. Jess said she put a note about that but will try to speak to them again.

Mom was happy to have coffee at breakfast, and said it was “very good.” She ate all of the yogurt and fruit on her tray, but nothing else came. We had a little stretch then headed to Physio, where Mom did well on the Nu-step and with standing exercises. She went to speech on her own and then I joined her for OT where Jess had her practicing transfers and writing. Mom had a pained expression on her face and pointed to her stomach when we asked what hurt, so OT ended a little early. Mom did well at lunch, and I was able to convince her to get in bed for a rest afterward. She stayed in bed listening to Stuart Maclean stories for the whole hour while I whipped home. Back at the hospital I surprised Mom with her favorite coffee cups and an afternoon coffee to sip with me, and we are now about to take a look through her recipes to find some Christmas baking ideas. Looking forward to it!

Update from Laurel:

I arrived this afternoon shortly after Larry had left, but Mom had already gotten out of bed, once again refusing the opportunity for a rest. I found her in the nurses station, and walked up to the door and said “Mom.” I was very happy that she quickly turned around, gave me a big smile and rolled up to me to say hi. We went to her room and had a really nice chat, the best one I’ve had with her since this incident. It was nice to hear her speaking loudly, clearly, and even offering appropriate questions and comments. At one point, we were talking about Christmas movies that we could watch. There is a joke in our family about Mom and the movie “A Christmas Story,” as for two or three Christmases in a row Mom claimed she had never seen the movie, and then we’d rent it for her and 5 minutes in she’d realize that she had seen it, and then the next year the situation would repeat all over again. During our conversation today I sarcastically said that we should watch A Christmas Story as she’d “never seen it,” and to my surprise Mom actually laughed and sarcastically offered “Oh yah, I’ve never seen that one,” shaking her head at herself and seeming to have remembered the family joke.

Cam joined us shortly after and Mom was very happy to see him. She had us both laughing multiple times, and she seemed to enjoy Cam’s use of her old wheelchair. Eventually we had talked Mom out, which even she realized as she made comments about “losing [her] voice.” We had a Skype session scheduled with Mary/Gaga however, so we called her up and Mom was able to partake in the conversation, although much more quietly and with more time spent listening than earlier in the afternoon. Eventually, I was able to convince Mom to rest in bed for a little while before dinner and watch some YouTube clips with me.

Although the rest was meant to give her more energy before dinner, it ended up appearing to disorient her. Mom was quite angry when we arrived in the dining hall for dinner, and eventually I was able to discern that she thought she had already had dinner and was very upset that I was trying to make her eat a second dinner. Mom initially refused to eat anything at all, though with some time and a little coaxing and reassuring she ended up eating all of her soup and most of her fruit and yogurt. Heidi joined us during dinner and Mom appeared to enjoy her conversation about Christmas and family. We ended our visit with Heidi giving Mom an early Christmas gift – a very pretty pink hoodie. Mom was visibly happy and appreciative of the gift, rolling forward to give Heidi a big thank you hug.

I got Mom back into bed and she still seemed a little confused, asking me if we had to have breakfast. An obvious sign of fatigue setting in. We ended the night doing some stretching and then listening to Stuart MacLean Christmas stories. Mom had her eyes closed and I thought she had fallen asleep, but then at very appropriate times she would laugh out loud at the story being told. Another reminder that Mom may at times struggle with being confused, disoriented, and/or forgetful, but nonetheless she really does comprehend so much of what is going on around her and is still so very intelligent.

So thankful to have started off the Christmas holidays today with Mom.

Today got off to a difficult start. Janet was just returning from the toilet as I arrived and we did our usual routine in preparation for breakfast. She was smiley but quiet and seemed fine to start the day. At the breakfast table things were fine at first but deteriorated in a hurry. I quite excitedly offered her a cup of coffee. She smiled and nodded her head but when it arrived she wanted nothing to do with it. I had to convince her to try some which she eventually did but only one sip. Her breakfast tray came and the only thing on it she would eat was yogurt and as she took the first spoonful, the sip of coffee she had a few minutes earlier came streaming out of her mouth. I was not impressed and told her so. She smiled and proceeded to try and “drink” her yogurt from it’s container. She completely ignored my instructions to use her spoon and kept trying to drink it, laughing as she did so. I believe the laugh was not a funny laugh but a I’m confused and don’t know what to do laugh but I was getting mad at her. Breakfast could not have ended soon enough and back to her room we went thinking I would let her drink her water rather than have me inject it. That was a disaster as well as she seemed to have lost her ability to swallow altogether. She started crying and that’s when I figured it was time for a restart. I sat her real close to me and told her we were starting the day over again because I wasn’t happy with the way this one was going so far. We prayed and I read her a bit of the Christmas story and we pretended the day had just begun.

Luckily this all happened on a Tuesday because this is the day Moira is always late getting back from Rounds so we didn’t have to worry about being late for Physio. Janet Bam Bam’d her way to the gym and lifted a few weights then played catch with me while we waited. She seemed a lot more with it after the restart and got a big smile on her face when Rob nearly fell off the mat he was kneeling on onto her lap. Finally a funny reason to laugh.

While Janet was in Physio I got a chance to speak with Dr. McCann. He is confident the timing is right for Janet to go to Connect and understands my concern about Physio. He said Janet has done better than he and other people expected her to do but probably isn’t getting full benefit from an hour long intensive Physio session now. If she shows signs of recovery as in close to walking again then she would be welcomed back to Rehab for a three or four week period. He feels the odds are against her walking again but she has fought her way through a lot already so you never know. He agreed that it is worth another try at Botoxing Janet’s legs and will do so before she moves to Connect. We are to continue with the passive stretching each day in an effort to maintain her range of motion and by the time we hit the one year mark we should have a clear picture of where Janet will end up physically. At Connect Janet will receive less direct physiotherapy but more active therapy from the staff. In other words, her day will be more active all around rather than busy busy for a short period of time. I asked about hydrotherapy and Dr. McCann is totally in favor of Janet coming to Rehab as an outpatient for that as soon as the peg tube is gone and her toileting improves.

Cindy the nutritionist stopped by next and we talked diet. Janet had another nice weight gain and is now in her proper BMI range. I explained that the lunches and dinners are going well but breakfast is a challenge. There are not many choices for breakfast on Janet’s diet so we will attempt the porridge one more time tomorrow and Cindy will try to dream up something else. Based on Janet’s weight and willingness to eat the pureed foods Cindy agreed to stop the late night tube feed for one week and see how Janet does without it. If her weight holds we can start thinking about getting rid of the peg tube provided we can hydrate Janet orally. Good news.

I picked Janet up from OT as she stayed after class to discuss the outfitting of her wheelchair. Another OT was working with Jessica and they came up with a few modifications to help Janet be positioned correctly in the chair. We then went for lunch and sat at our own private little table so Connie could join us and observe Janet’s eating habits. Lunch was a block of pureed beef and mashed potatoes along with a bowl of soup and some fruit, Ensure and pudding. There is no way I would eat all that even if I thought it was good so I’m not sure how they expect a patient to eat it all. The meat looked like dog food and I was really concerned that Janet wouldn’t go for it but thankfully she did. In fact she ate it all along with most of the mashed potatoes, soup and a little fruit. Connie was pleased with how Janet did. There were no swallowing issues other than a couple of delays and Janet did well feeding herself this time too. She kept a nice steady pace. Big steps forward.

Despite saying she didn’t have to go I some help to get Janet on the toilet and she went. I used that opportunity to get her into bed for an afternoon rest and told her I was leaving and Laurel would hang out with her the rest of the day. She didn’t believe me but stayed in bed at least until I was outside and past her window.

Thankful for all the information gathered today and the progress Janet is making.

Janet did a great job with her chores this afternoon and the best part was she was quite happy to do them. This is her bed after she made it including changing the pillow case and taking the dirty linen out to the bin in the hallway. The only help I gave her was some verbal instructions along the way. I didn’t physically help at all.

I had her open and read a Christmas card from our friend Esther. So nice to hear from you! We also read Tim’s column on “how do you judge christmas” which led to an interesting discussion about what makes a successful Christmas. Janet said Christmas to her is “fun, love and giving”. Very nice for an uncoached answer. Her discussion powers were waning so I convinced her to lay down on her nicely made bed for a while and offered to join her. The thirty minutes of downtime gave her enough energy to get through dinner. Macaroni and cheese, mushroom soup and puréed apricots for the most part vanished from her tray. She quickly wheeled back to her room where we spent a little time chatting before getting ready for bed. She wanted to read Anne 2 as she fought the need for sleep but as soon as she hit the pillow I knew she wouldn’t last more than a page or two so I cancelled the reading and laid beside her again for a bit as she started to doze off.

Janet continues to fight to stay awake all day without a nap or rest time and it kind of caught up to her today with the two rest breaks. I don’t think it’s anything major to worry about but I will continue to remind her how it benefits her when she does take a break.

Praying for a night of healing and a day of fun and learning. Praying for a safe and onetime flight for Laurel.

Janet was in her usual spot at the breakfast table this morning. No coffee this time but she was still laughing about yesterday. She was a little on the quiet side overall and only ate her yogurt as she didn’t like the puréed pears. Back in her room she transferred herself very strongly from wheelchair to bed using the sliding board and I was able to get a really good stretch on her ankles and right arm before going to the gym for Physio.

Transferring from bed to wheelchair is getting pretty easy for Janet and she wheeled very confidently down to see Moira. As we moved away from the bed I asked Janet to try a little two footed Bam Bam action and she did for about five steps. It was clear this time that she’s not kicking her right foot forward but she is lifting her right leg up which allows the foot to spring ahead. Still encouraging. I mentioned it to Moira and she will see if she can get Janet to do more.

I sat in on Speech this morning so I could talk diet to Connie. She put Janet through a new series of activities identifying things in groups and naming favorites. Janet did well as long as she had some cueing. Connie was surprisingly accepting of the coffee drinking and said as long as Janet is under close supervision and not eating she can have thin liquids. I’m chilling the wine now.

When I returned from running errands and shoveling snow Janet was reading a magazine in the dining area “just being me”. I had encouraged her to rest after lunch but it was no go. She seemed very happy to be out on her own and while I’ve been writing this she’s been putting away her laundry and making her bed and seems to be enjoying the challenge. Looking forward to an afternoon of learning.