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.
Its a good thing Janet got lots of rest over the weekend as today was a big work day for her. Jess had her in the gym and walking this morning. Wendy had her and the other residents filling out daily schedules that they need to follow and check things off as they complete them. Janet was not thrilled with that idea as she doesn’t “like people telling me what to do”. When I explained it was a way for her to map out what she had to do each day she was more accepting of it. All this info is on Janet’s calendar on her iPhone so I guess its time to teach her how to access that better.
Nap time was without sleep again for the most part and Janet admitted to being “out of it” as I helped her get up. To her credit she suggested doing something active to get herself going again so off to the Shuttle we went. Janet is slowly getting stronger and more able to control her right leg. The increases are minimal but there. Her effort was good and overall she showed stronger than a week ago. It took a lot of convincing but Janet got onto the Tilt Table next and tolerated it for thirty minutes. I was impressed by her ability to stand on her right leg for a count of four or five and pleased that she’s starting to recognize the benefits her left leg receives when she shares the load with the right.
Karl’s chicken curry was too spicy for Janet so we switched dinners tonight then started the real work, walking. Janet is pleased with her new shoes and I notice more stability for the left foot with them and we had a nice warm up walk from the kitchen to her room. That used to be the absolute extreme for Janet, now its a warm up. After a break and chat in her room we headed back to the kitchen to ask Chelsea if she would assist with the sling. Janet was nervous about doing this but is starting to understand the safety aspect of it and I think thats what allowed her to agree to do it tonight. Compared to her first attempt last Thursday she was a hundred times better tonight. After a forced fall to better understand the equipment Janet walked around the course really well and without complaining until she got tired. Her cornering was great and as long as she keeps momentum she walks quite well. Fear still controls her a little but I saw a lot of confidence creeping through tonight. The last walk of the night came as a trip to get her meds and feeding off that increase in confidence I had Janet free walk from her bed to the door of her room. She made it half way in what was her best free walk yet. I’m excited for what tomorrow brings as hopefully Tez will work on the sling with her and hopefully I can be there.
“Exhausted” after all that walking Janet was happy to sit down and reply to some emails. She typed one to her mom with very little help from me then voiced a couple of others as the concentration it took to type wore her out a little. Or maybe a lot as she was asleep before ten as I read to her.
Praying for continued improvement in Janet’s walking abilities and the confidence to keep working hard.
What a difference going to the pool in summer weather. So much easier as Janet isn’t wearing fifteen layers of clothes to change out of and into and she’s not already cold before getting near the water. There were even bigger differences in her abilities today as opposed to a few months ago when she last went, such as, walking down the ramp into the kiddie pool with me leading then walking up it on her own using the handrail all the way to seating herself in a wheelchair. Walking down the stairs into the hot tub and up again using the handrail with me supporting at the hips. I used to have to carry her into the hot tub. High five!
Today’s agreement was for kiddie pool and hot tub only and I stuck to that as the whole point was to give Janet a safe environment to walk on her own in. It took a little while to get loosened up and confident but after a few attempts and some coaching from Tez Janet walked on her own for five or six steps at a time. She fell a few times and didn’t seem to mind at all and I think that eased her fear a little. For the most part she did a good job of pushing down with her right leg. The experience was good and in talking afterwards Janet was receptive to trying the sling once to compare.
That opportunity came sooner than Janet expected when she walked from her room to the kitchen after a nap to ask Curtis if he would help her before he left for the day. To Janet’s dismay, Curtis agreed. The difference in Janet’s walking in the water and using the sling is night and day so I had to rescind my offer of her choosing one or the other as the sling is just a million times better for her. She is scared and pouted a lot the first attempt but persevered and turned in an excellent walk around the ten foot square the sling allows her to travel in. Janet stood on her own for over five minutes arguing for us to take the sling off not even realizing she was standing on her own. She thinks that somehow it is holding her up and affecting what she does but its all her and on the last lap I think she started to realize that. She put good combinations of steps together, made really nice turns and corrected her balance well a few times. She lost it a few times too and I think started to understand how the sling prevents her from falling and nothing else. After a lot of sweat and hard work Janet completed what will now be a daily routine at Connect for her and should help her to make significant gains in walking on her own.
Having worked so hard today I gave Janet a pass for good behaviour and brought her home tonight. Along the way we stopped at the mall to do some shoe shopping. The lady that built Janet’s AFO stopped by Connect this afternoon and gave some advice as to the types of shoes Janet can wear with the biggest rule being no heals. For casual shoes, pretty much anything that fits will be fine and for the wedding it’s a lot more complicated. Janet is wanting a dressy shoe for that but is restricted by needing pretty much the whole shoe to open up in order to get it on her AFO. We found some that were close, one pair actually went on but just weren’t stylish enough for her. We may try more tomorrow.
Praying for strengthening of Janet’s right leg and confidence to keep working hard.
No phone call from Janet today, she was too busy. Tez had her in the gym and up at the parallel bars where Janet “walked” a couple of laps using a cane while in the sling. Tez insists that is the safest way and Janet didn’t complain much to me about it so maybe she feels a little better about it now. She did say the walking was very hard and she doesn’t think that’s the way to start really walking again. Janet says she will just “get up and go, in a couple of days”.
I could see Janet as I rounded the corner into the Connect parking lot as she stood in the Standing Frame. Its funny being able to see her like that, taller than she really is. Dinner followed the standing with Janet doing an excellent job cutting her ham with a rocker knife. Most meals don’t require such cutting so it had been a while since I’d seen Janet use the rocker and I’m impressed with her improved skills.
Janet asked to work on her SheLife stuff for tomorrow after dinner and I have to admit I found it a little overwhelming myself. We ended up just reading the associated Bible story which Janet followed well and asked some good questions of. She still doesn’t think she gets it but I can’t see what else there is to get. Her questions were exactly what I would ask and seem to be totally appropriate discussion points for her group. Hopefully things go well for her tomorrow night.
The only exercise Janet didn’t do before my arrival today was the Shuttle and she turned in another fine performance this evening which earned her the right to choose the rest of her night. Olympics it was and she really enjoyed the Slope-style skiing and the figure skating, so much so that there was no time left for reading. So ended a strong day for Janet and I pray she gets a solid night’s sleep and has a productive Wednesday.