hope

Janet, A Success Story. May 16. #TSJ

I was so pumped to write yesterday that today seems a little anticlimactic but here goes.

My intention for the day was to let it unfold at a Janet pace with therapy taking place covertly and I think that’s how it ended up going down. We were up at a decent hour and Janet elected to have a shower to start off with. That made breakfast to be more like brunch which also set back the planned trip to the grocery store. Janet wasn’t too into that idea so she was thrilled when I offered to go alone and have her vacuum while I was gone. That is a challenging task for her and she was still working at it when I got back although more accurately she was trying to free herself from the hose so she could go to the bathroom. High five for effort.

The sun was shining again so we went for a nice long walk then sat out and had a late lunch while trying to get some colour on Janet’s legs. She’s been somewhat shy about showing her AFO and I’ve had to really insist she wear shorts or a skirt so far. She’s getting more confident about it though and was pleased to see some tanning happening on her legs today.

We simplified our dinner plans to take in a movie tonight, something Janet was very excited to do. When asked what it was that was so exciting about going to a movie, she was like a little kid saying, “just the whole thing about going out”. There aren’t too many Janet movies out right now and we agreed on Heaven Is For Real. Janet said she was “into it right from the beginning, I couldn’t even eat the popcorn”. I wasn’t sure if she was into it or zoning out so was glad to hear at the end that she really enjoyed it. Janet also mentioned its not a movie for everyone but really was for her. A big part of her connecting to it was the fact its centred around a four year old and we all know about Janet’s connection to them.

I mentioned there was to be some covert therapy today and it came in the form of purposeful walks, like to and from the bathroom. Janet really complained about her sore foot and I’m starting to think she’s psyching herself out about it more than anything now. There is nothing to indicate any soreness anywhere except when she puts weight through it. She said tonight that she felt like she hadn’t been walking enough and things felt stiff. We’ll change that tomorrow. The rest of the therapy was focused on independence with Janet doing a lot of “everyday” tasks on her own. I tried to get her to tell me what she thought she’d be doing with herself once she’s home full time and neither of us has an answer for that right now. That’s a little scary I must admit.

Praying for a solid sleep and a Saturday full of progress.

Janet, A Success Story. May 15. 2 yr Anniversary Video. #TSJ

Feeling confident after having Janet’s doctor adjust her Dilantin dosage I chose to hold off on getting her blood tested today and instead went to Connect this morning to observe Tez working with her. Janet is still complaining of a sore right foot but indicated it might be a little better after not having walked at all yesterday. There were a group of students with Tez who invited Janet to be a bit of a guinea pig in demonstrating the walking sling and sharing her story and the challenges she’s faced along the way. Janet did so with great enthusiasm and humour and I think made the session a good learning experience.

Given the choice between lunch and a bike ride, Janet chose bike ride so she could get it over with. We had to wait a few minutes for another resident to finish which gave me time to ask Curtis about Janet’s positioning on the bike. She had typically been seated fairly close forward to give her the easiest pedalling position but I wondered since she is so much stronger now if it would be more beneficial to sit farther back and extend her legs more. Curtis agreed and we set Janet up that way with the bike on the same difficult settings as yesterday and she rode really well, only sacrificing less than half a mile while gaining a much better stretch and more activation from her right leg.

We enjoyed lunch in the sun then got Jess and Chelsea to help with a little video shoot in the parking lot. Janet nailed her scene in one take! As a reward for her hard work and to “celebrate” her second anniversary I brought Janet home for the weekend a day early. She was thrilled and even tried powering through without a nap until almost five o’clock when things finally caught up to her. It had been a much improved day compared to the last couple and we finally got news from the neurologist re the Dilantin levels. He said fluctuations are common and Janet’s don’t present any reason to change course other than trying a lower dosage. One contributing factor is hydration level and with Janet walking more and the warm weather she’s sweating out a lot of fluid without replacing it all. This time I believe she fully understands and drank well tonight. We will continue to watch her levels closely.

A lot of you have been with us since day one of this journey and on this two year anniversary day Janet and I want to honestly thank you all for your prayers, encouragement, support and friendship. Each day, Janet seems more and more aware of the impact you have had on her recovery and realizing that, motivates her to share her story with others and give support where she can to those facing their own challenges. Today could have been a sad reminder of a horrible day but neither Janet or I had even the briefest thought of that. Today has been a quiet celebration of the amazing recovery that Janet has made through the grace, love and mercy of our Lord and Saviour, and a look ahead to the changes yet to come. This video is a reminder of Janet’s amazing success story and the beginning of a new chapter in a life full of love.

Janet, A Success Story. May 14. #TSJ

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.

Wes and Janet sailing along.

Cool Connect Crew and cool Matt.

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.

Janet, A Success Story. May 13. #TSJ

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.

Janet, A Success Story. May 12. #TSJ

Is the tide of doubt changing? Janet actually said she did well walking in the sling this morning and she repeated that descriptor tonight. Her confidence in walking is for sure getting better and she is more willing to free walk now albeit for relatively short distances. The pain in her right foot apparently has shifted from above her arch to the area where the leg becomes the foot and is only present when she puts weight on it. I asked Chelsea to note it in Janet’s chart in hopes that Tez can be made aware and talk to Janet about it.

As I walked into Janet’s room this afternoon she only woke long enough to say she’d had a big sleep then went right back to sleep again for a good twenty minutes. Her day had been pretty busy so I let her call most of the shots tonight. After setting the table for dinner we spent a nice time in the sun on the patio and Janet was upset with herself for not being out in the sun earlier. There was no hesitation in going for a bike ride after dinner and Janet set another record riding for 3.6 miles. I snuck her into a higher level of resistance too and she didn’t even notice. High five!

Walking with me this evening was good but not her best. She complained regularly about being in pain while hanging onto me but when free walking she was quiet and did very well. I think that as long as that pain goes away Janet could free walk forty or fifty feet very soon.

Janet chose to just hang out in her room most of the evening doing some reading, coin rolling and chatting. Her reading seems to be improving and could be a lot better if she’d remember to turn her head all the way to the right in order to see everything on the page or screen. When I read to her in bed tonight she actually stayed awake for the whole hour and gave some good feedback on what we read.

Praying for immediate healing of the pain in Janet’s right foot and for a productive Tuesday.

Janet, A Success Story. May 11. #TSJ

I hope all you mothers had a great day today. Janet said hers was “boring” and I got really mad at her for saying that which made for a mediocre evening after what I thought was a rather pleasant day.

Janet was up earlier than yesterday as she had a Skype chat booked with her mom but she still got a sleep in compared to a Connect day. She did a great job getting her breakfast on her own with one little reminder from me for the toaster oven. The mom chat was pretty good and we then walked in the sunshine to the store for some dinner supplies. Upon our return Janet was back on Skype, this time with Heather, and curiously, she didn’t seem to have much to say except for when the topic was Heather’s wedding. Janet is truly excited about that and knew on her own it is just over a month away.

Wanting to enjoy the sun more, we took the dog for a walk around the neighbourhood which ended with a nice chat with our neighbours Bonnie and Toly. I’m really grateful for such good neighbours and for Janet to be able to “bump into” them so often. It will be great when Janet is here full time.

Since we had been in the sun so much we figured John would be wanting some so we drove out to see him and after a slight bit of arm twisting we got him out of bed and out into the world. This was his first adventure off the property and you could see the life returning to his face. I’m somewhat concerned that now that he knows the code that unlocks the doors he might make a run for it one day. Only partly kidding.

Janet slept for an hour when we got back home then chatted with Andrew, Laurel and Cam. Those conversations were poor I thought and Janet agreed that she should’ve taken some time to wake up more before making those calls. Now we know.

Janet had two excellent free walking sessions today going from our bathroom to the dining table, once needing a little help along the way and the other completely on her own. Still being Janet, she refused to acknowledge how well she’d done. The good part about that is she really wants to do better. She will.

Praying for a night of uninterrupted sleep for Janet and that she wakes, refreshed, energized and with a positive attitude for the day ahead of her.

Janet, A Success Story. May 10. #TSJ

After a big sleep in this morning Janet made her own breakfast then tried to compose an email by herself. She is getting pretty good at using the talk to text function on Gmail and I’m teaching her to use Siri on the iPad but her speech isn’t always clear enough to allow for a clean translation. Her email took a long time to compose but she did a solid job.

We chose to run a few errands while we could, one of which was to pick up her new shoe that had the strap sewn onto it. Janet test drove that pair at church tonight and other than being a little noisy they seemed good, good enough that she walked all the way from the car to her seat without complaining and only stopping briefly to chat once along the way. That was her farthest walk yet and it was repeated in reverse after the service. Big high five!

There was a Social Club event at our strata’s clubhouse tonight that we joined in on as soon as we got home. It involved playing a rather silly dice game called Bunco but the real fun was in hanging out with the neighbours for a couple hours. The game required moving from table to table each round and Janet and I played separately so she was at a different table than me most of the night. At first I wasn’t sure if she would enjoy that but each time I looked over at her she seemed to be smiling bigger and by the end of the night she admitted it was OK. High praise in Janet’s book.

Popcorn and American Idol closed another late night but what the heck, as long as Janet is awake enough and engaged in something I’ll let her do it and she enjoyed the show and especially the popcorn.

Praying for a good night of sleep and lots of energy tomorrow.

Janet, A Success Story. May 9. #TSJ

Going home day for Janet today and she didn’t get to go as early as she had hoped. I had lots to do before I could go and get her so while she waited she did lots of walking with Nicole, a student on practicum at Connect. Janet complained of that sore right foot when I called her at lunch but never mentioned it at home tonight. That foot does seem a little swollen on the arch to me so we may be headed for the doctor for this one. On our way home we stopped at the show repair place as they requested Janet’s foot to make sure the strap they put on her clog fits. I used the opportunity to have Janet walk from the car into the store and back as we were able to park right outside. She did well on the way in, stepping up a three inch curb very nicely. The way back she chose not to follow my directions and went a little sideways stepping off that curb. No risk of falling but not very graceful.

We hosted two couples at our house this evening who are interested in joining a Small Group we have been wanting to start for a while. They all seem nice and the conversation was good although Janet seemed a little disconnected after the first twenty minutes or so. She had all positives to say after our guests left though and we are looking forward to meeting with them every other Friday to study Crash the Chatterbox by Steven Furtick.

It was late when the company left but we stayed up to catch up on The Voice and I’m happy to report that Janet’s new pick is on to the semi finals. We haven’t done so well this season but Janet is really enjoying the show.

Praying for a night of deep and healing sleep and a fun day tomorrow.

Janet, A Success Story. May 8. #TSJ

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.

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.