Whew! What a day. The warmest day of the year so far and a perfect day for Janet to try sailing. I met her and the others at the yacht club this morning expecting to watch her for an hour or so then take her with me to run some errands but I actually got to go on the boat with her! I really enjoyed it despite the calm conditions, Janet enjoyed sitting in the sun but that was about all. I may try and convince her to go again as it’s an awesome way to spend a sunny morning.
Wes and Janet sailing along.
Cool Connect Crew and cool Matt.
From there we went to have Janet’s dress for the wedding hemmed. It was quite the production as we had to get Janet into the dress and shoes, have the expert pin where the dress should hang to then get her regular clothes back on. I don’t know how you women put up with stuff like that. We did a little shopping since we were out and enjoyed lunch in the sun at Janet’s request. By the time we got home she was exhausted and went for an almost three hour nap!
I was getting worried she’d never wake up as the clock moved closer to departure time for Heidi’s house but Janet finally woke up just before 5. All I could think of the last hour of her sleep was her Dilantin levels being out of whack and what sort of impact that is having on her. Janet’s doctor was not in today so I had made the decision to hold back a third of her dosage again tonight then get her levels tested tomorrow. When Janet woke up she seemed refreshed but was really warm and her left eye seemed a little relaxed compared to the right one. By the time she was dressed and had a glass of water she seemed fine. Praying for resolution to this tomorrow.
Heidi had all of her SheLife ladies over to her house for dinner tonight and I dropped Janet off there then went to work at the church. This is the first time I’ve left Janet somewhere far away from me and for an extended period of time. I know all the ladies would take good care of her and they did. Janet said she enjoyed the evening but everyone helped her a little too much. This marks the end of SheLife until September. It’s been a true blessing for Janet.
Curtis surprised us with a reduced dosage of Dilantin when we got to Connect. Apparently Janet’s doctor ordered the change and the pharmacy delivered it tonight. That is a bit of a relief knowing the doctor is aware and took action so I will hold off on testing until I hear from her. On the car ride to Connect Janet was able to tell me about her evening quite accurately and with good but a little quiet speech. I feel better about the situation tonight and pray she has a good night of sleep and an energetic and bright day tomorrow.
Jess brought Janet in to KGH for her appointment with Dr. Miller this morning and I met them there. Janet is always pretty upbeat about seeing Dr. Miller as she knows its just for a chat and she always receives lots of positive feedback. This morning was no different and I could see Janet openly seeking Dr. Miller’s approval on things and truly valuing his opinion. I can’t think of anyone else she gives that much credibility to. Jess and I encouraged Janet to walk into the office at the start of the meeting and she did the last ten feet freestyle which won her praise from Dr. Miller, but he rightly pointed out that Janet’s cognitive gains are more impressive and carry more weight in the long term. I knew that but needed to hear it again. Janet participated well in the discussion and agreed to speak at a gathering of Rehab staff that Dr. Miller will organize as he believes strongly in staff being able to see the results of their work long term. This idea came about from Janet’s SheLife speech and my prompting that we feel its important Janet share her story. To put Dr. Miller’s theory to the test he encouraged Janet to seek out some staff that worked with her on her way out this morning. Thankfully there were a lot of them around and no seeking was necessary, in fact once Janet was spotted, they were doing the seeking. Each encounter was filled with surprise (Janet was walking through the ward) and excitement and Janet felt good about it all, she even demonstrated her freestyle walking to Moira who came out from her lunch break to see Janet. A very positive morning.
As soon as I got to Connect this afternoon I sought out Tez to have a look at Janet’s painful right foot. He didn’t notice any structural issues and suggests it could be from the increase in walking and using muscles that haven’t been used in a long time. To rule out the new shoes he told Janet to stop wearing them for a couple days. We will keep monitoring this.
Janet had her Dilantin levels checked again this morning and this time they are well above therapeutic range and I expected a phone call from her doctor but didn’t get one so I made an executive decision to reduce her dosage by one third tonight and hopefully talk to the doctor tomorrow. I asked Dr. Miller if he would nudge the neurologist to respond to our enquiry on this topic and he said he would.
The pain in her foot didn’t stop Janet from doing some good walking tonight along with a decent Shuttle workout and Standing Frame session. She really enjoyed the dinner Chelsea made and very reluctantly walked up to Games Night and put in a fine performance there. He “favourite” game is one where the group is asked what they’d pack for a vacation to a certain destination. Each person has to repeat what the person or persons ahead of them said then add what they’d bring without duplicating anything. Janet does best with the sunny destinations of course.
Sleep came seconds after I started reading to Janet tonight which is good because she needs to be up a little early to go sailing tomorrow. She of course is not at all excited but I think its worth a try. Praying for a good night of rest, for Janet’s Dilantin levels to stabilize and the pain in her right foot to stop. We are also praying tonight for Janet’s step dad who is in hospital in Collingwood and for Willie, a resident at Connect who is having some heart issues tonight, his 65th birthday.
My lunch hour phone call to Janet today caught her full of energy and talking really loud. It wasn’t just her phone, she was amped up, giggly, loud and confident. Nice to hear although she still has challenges in bringing out key words.
The Janet I found when I got to Connect later on was tired and sapped of energy. She said she slept but it didn’t look like it to me. There wasn’t a lot of motivation to do any exercise but she was happy to go do her duty prepping dinner as indicated on her daily schedule. Chelsea had her helping to make breaded pork chops, rice and corn on the cob. Janet thought the whole process was “ridiculous” and it was a little chaotic and unorganized but still good she helped.
With time to wait before the dinner was served I encouraged Janet to go for a bike ride hoping that would perk her up a little. She said she was tired but turned in a very respectable ride and it did liven her up. Janet walked well from her room to the dining table and then back to her room. She complained a little of a sore right foot again and we’ll keep an eye on it. It didn’t seem to bother her later in the evening, especially when she free walked from her bed to her room door and then from her bed to the bathroom. I didn’t even ask her to do that one and she made it the whole way without grabbing me once. High five!
Respecting her low energy levels we did a bunch of Speech type work tonight that included reading, typing emails, voicing emails and a Skype chat with Laurel. Turned out to be a good use of time as Janet did well with all tasks.
The results of Janet’s blood work were emailed to me tonight and the Dilantin is still at the high end of the therapeutic range with no reply from the neurologist yet. An answer soon would be nice as I’m starting to see some signs of side effects with Janet or maybe I just think I am. I do think it’s strange the levels are so high all of a sudden but at least they are staying there now.
Janet was in bed by 9:30 and really wanted me to read but by 10ish she had fallen asleep numerous times and seemed out for the count so I said goodnight. Praying for a night of rejuvenating sleep and lots of energy for tomorrow.
I’m not sure how to start this post as Janet and I along with a few other Connect folks saw the movie Noah tonight and I’m still rather consumed by it. I didn’t meet up with Janet today until she and the others got to the movie theatre but I did call her at lunch time and she was quite excited to be outside at Beasley Park having a picnic with a bunch of Connect people. She also was excited to tell me she had done some walking from the breakfast table to somewhere she couldn’t name, I’m thinking the Den but it may have been further. Point is, she was excited to have done it.
Janet expressed all emotions except laughter during Noah and overall thought it was a good movie with a lot of parts she didn’t understand. I would concur and Janet and I had a good talk about it in the car and right up until bedtime and would love to hear from any of you as to what you thought of it. It was exciting to be able to take Janet to a movie and for her to sit through a long one like that. Her sitting was made more comfortable in that she was able to sit in a theatre seat after a difficult transfer that included negotiating a three inch step down to get to her seat. Popcorn and pop helped too of course.
Praying for a restful night of sleep tonight and for an energetic Janet tomorrow and also for Heather to arrive safely and on time.
I was a little concerned as I arrived at Connect this afternoon and saw a tired looking Janet sitting in the Standing Frame. We had planned on leaving early for SheLife so we could run an errand and not be rushed through dinner. Turns out Janet was just getting out of the Standing Frame, not into it, and she had tried to nap but just couldn’t do it so off we went and my concern was all for not as Janet had an excellent evening.
The first part of her day was pretty routine from what I could gather as she had done all the requisite exercises and worked on Speech with Mary Lou. When I asked about walking, Janet was quick to say she had not done any yet but was going to at SheLife. I was pleasantly surprised she remembered that and that she still wanted to do it. We arrived at the church a half hour early so Janet could have a bathroom break before attempting to walk to her table for the evening’s session. She thought I was going to make her walk from the bathroom but that’s probably in the 150 foot range and even I am not that mean to have her try that yet. Janet happily suggested starting from a set of doors about 80 feet from her table. It was still early so no one was around as she started out which gave her time to really get going without the distraction of people watching. Twenty minutes later Janet sat down at her table to loud applause and cheering from the whole room and Janet was visibly happy with herself. Along the way, she took some really good steps, corrected her direction well with lots of coaching from me, and only once let people distract her from what she was doing. It was an excellent public walking debut and Janet is truly excited about having done it as she even reported it to Chelsea upon our return to Connect. I think I’m more excited about Janet feeling great about accomplishing such a thing than I am about the feat itself. Exciting times.
Praying that Janet sleeps well tonight and has a productive Thursday.
I arrived at Connect this afternoon to a very tired looking Janet hanging out in the living room. She said she slept but it sure didn’t look like it. That didn’t stop her from making a nice salad and setting the dinner table at Chelsea’s request. You think she knew I was lining up some exercise for her?
At my suggestion earlier in the day Janet did some walking in addition to her regular gym stuff and after dinner tonight I was able to get her to walk farther than I anticipated. She made it from her room to the Den very nicely and didn’t complain once the whole way. Despite a lot of resistance we went to Games Night following the walk. Janet feared not knowing any of the answers to the “stupid” games played and said she would only go to watch. On the very first question, Janet piped up quickly with the correct answer and did so a number of times during the evening. According to her, even with that success, “it was not fun”.
The last few days have been great for Janet both physically and cognitively. Her walking, in my opinion is improving, her short term memory is getting better too and she almost always can tell me the day, date, month and year, a skill Dr. Miller was encouraging a few months ago and I think we can now say has been achieved. Janet had another blood test today checking her Dilantin levels and they came back fine. All these positives are helping to grow Janet’s confidence to the point where she says she’s going to try and walk the last part of the way to her table at SheLife tomorrow. Can’t wait.
Praying for a solid night of sleep and a positive Wednesday.
Janet went right back to work today at Connect with a morning walk from the dining area to her room. That’s the longest walk she’s been on, close to 80 feet, and she was, dare I say, excited about it when I called at lunch time. She repeated that distance this afternoon with me, going the other direction, and showing improvement in her balance and confidence. Very exciting.
That was for sure the highlight of the day but Janet was in a good mood and quite bright the whole time I was with her. She practiced some hand writing using a workbook Mary Lou gave her and is producing more consistent letters than before. After reading The Artisan Soul, which talks a lot about artistic freedom, it is hard for me to tell Janet to stay between the lines, but I think it’s best she does. Janet reluctantly agreed to a Standing Frame session after dinner. It had been a while since her last session partly because of the pain she was complaining of in her right leg. That seems to be diminishing as Jess was able to stretch Janet well this morning and I got no mentions of pain tonight. Fortunately the NCAA basketball championship was on while Janet was standing and that provided a nice distraction and a fun way for Janet to end a very hard working day.
Praying for lots of strength and a positive attitude for tomorrow.
Sunday started out well and ended really strong. Janet has bounced back from whatever was bothering her the last few days and by tonight was at her brightest ever it seemed.
I let her sleep in a little this morning then she got her water, meds and coffee all by herself while I showered. Usually I’m watching as she gets her breakfast but today I let her go on her own and she did fine. Our plan was to have pancakes and Janet helped me make the batter but the egg we used was from a carton that expired in February and we added too much milk so it was back to toast and peanut butter. Janet took part in the weekly Skype session with her mom and enjoyed that conversation.
The first walking attempt of the day was a good one and I continue to see improvement, especially in Janet’s ability to step with her right leg. The weather was nice enough to walk around and hangout outside for a little bit this afternoon and Janet helped me with some landscaping ideas before her nap. A half hour is better than nothing and Janet got up feeling pretty good and executed a really good walk from the bathroom to the dining table. She seems to be even gaining some speed although I’m not timing her yet.
Janet helped build a salad and we enjoyed a nice dinner with pretty amazing conversation lasting well into return to Connect time. After Janet’s surprise announcement yesterday that she wanted to share her story at SheLife I thought that would be it for amazing announcements for a while. Wrong. I helped Janet take some notes on what she wants to talk about and that lead to some very interesting comments and questions from Janet centred around what happened to her, why, how amazing it is that so many people have supported her along the way and how much she has improved. She’s finally accepting that truth and I was able to reinforce it today by showing her some old video of her 4B and Rehab days. Janet took it all in and really processed it well, asking very poignant questions without getting too emotional. A couple of hours later and Janet had a very clear picture of where she’s been and how she’s gotten to where she is today and I think it’ll stick with her now. She wants to meet Dr. Redekop and thank him for performing the surgery that gave her a chance and was intrigued by my stories of the incredible nurses at VGH ICU and would like to meet them too. I’m not sure if any of this is possible but we’ll try to make it happen. The hardest part of this journey for Janet to understand is why so many people stepped up and did so much to support her. She’s still lacking confidence but is immensely grateful to all of you for all you’ve done and I believe you’ll be hearing more about that from Janet herself soon.
Praying that Janet has a most excellent sleep and a productive Monday.
A much better day for Janet today in all areas. Only one toileting accident, some really good walking and good participation in the things we did today. I am somewhat relieved, especially in regards to the toileting thing and am still keeping an eye on her right leg. Janet didn’t complain of pain as much as yesterday and when I put her to bed tonight she said it felt fine. Cautious optimism.
Her walking was borderline exciting today as there were moments when she was pushing down nicely with the lower part of her right leg. A lot of the time she more or less drags it into position but a few times today there were strong and deliberate steps taken.
We managed a visit with John today finally. He has moved to a care home and is not too happy about it. This is a temporary stop while he waits for a room at the facility he’d like to be in. We pray that happens soon. Janet had a nice little chat with him at his dinner table and also with his table mate, a former pre school teacher from Ontario.
The highlight of the day in my opinion was when Janet “woke” from her afternoon nap, that was just a rest. She said that someone at SheLife said they would be having some of the ladies share their stories to the whole room and Janet “…would really like to tell my story”. She said a little of what she’d like to talk about and it was very sweet and insightful. I’ve prayed lots for her to be willing to share and am excited she may get an opportunity soon. The first step was to clarify what was said at SheLife so Janet emailed Heidi to find out. Who knows, maybe she’ll be writing this blog soon instead of me.
Praying that Janet has another great night of sleep so that she has energy and strength to keep on improving tomorrow.
Surprisingly, Janet was in bed when I got to Connect to take her to her eye doctor appointment just after lunch today. Her morning was busy but not overly so with a light workout in the gym that included stretching of her right leg. A good sign that the pain there may be subsiding. The rest of the time was routine except for a couple of toileting errors that Janet is upset about. She went pee a lot today which is unusual for her but isn’t to the abnormal range yet and there’s no indication of any other symptoms suggesting a problem anywhere. Hopefully tomorrow is drier. Despite falling asleep as soon as she hit the pillow last night, Janet feels like she woke up in the middle of the night and didn’t sleep well after that which is why she was trying to nap at 1pm today. There was no time for such nonsense then so up she got and off we went.
Our Optometrist gave Janet a very thorough exam and noted some improvement in Janet’s vision from a year ago. We agreed that most of the improvement is from Janet compensating for her right side impairment better and just being way more aware over all. Her eyes remain healthy with some physical improvement and the doctor noted Janet’s vastly improved reading skills. To help with that some more Janet is getting a pair of reading glasses so she hopefully won’t get frustrated as fast as she does now.
Janet was deserving of a nap when we got home and took advantage of the opportunity for two hours. We had planned on a date night tonight but I sensed that Janet wasn’t in top form and after some discussion we agreed to get some take out and stay home. She was worried about having to go to the bathroom a lot and her energy level could have been a lot higher. We both really enjoyed our meal from Hector’s Casa, our neighbourhood Mexican restaurant, and along with watching The Voice it made for an enjoyable evening. Janet got the place to herself for an hour as I had to run out to Connect to get her new meds that arrived late in the afternoon and she handled that just fine. At the end of the night Janet agreed to walk from the couch to the bathroom but got a few steps in then had to pee so that ended that. Tomorrow will be different.
Praying for Janet to regain control of her toileting, for the pain to leave her right leg and for her to be able to do lots of walking this weekend.