Working out in the gym with a smile on her face is where I found Janet this morning as she was counting out her reps for one of the new exercises designed to increase control of her right leg. I was early to take her to the Botox appointment so I went to chat with nurse Jen and Wendy while she finished her workout. Jen agrees that Janet is doing really well with her toileting lately and wants to move very slowly towards stopping the laxatives Janet currently gets. The dietician is checking with Janet every couple of weeks and is in control of this part of things. I find myself wanting to end as many drugs as possible as quickly as possible for Janet but that’s not always best for her. I will be patient and enjoy the success Janet is having. Wendy agreed that Janet is making progress with the iPad but isn’t fully grasping what she’s doing. That is one of the trade offs of this method of teaching as Wendy wants Janet to not be thinking of how to do the simple things like turn the iPad on but it makes it hard to add more complex tasks right away as Janet doesn’t understand what she’s doing. Patience again and we decided to try and make the iPad more of a focus of information for Janet so no more white board in her room. The staff and I will communicate with each other and Janet using the calendar in Janet’s iPad so she has more reason to use it throughout the day. It would be great if more of you would drop an email to Janet more frequently. I know she doesn’t like to type replies but dictating them is kind of fun for her and that is something all of us can help her with. She just needs more, short, emails to reply to. email@example.com if you are willing.
Dr. McCann took his time with Janet today, really wanting to make sure the best areas are targeted with this latest round of Botox. Janet was a little nervous heading in but appreciated the attention and opportunity to say how she was doing and what hurt etc. We agreed to ignore the left leg, inject for the right fingers and wrist and especially the right hamstring and the muscle that controls the side to side movement of the foot. Don’t ask me what it’s called. Janet was a trooper and I think we hit all the right spots. Dr. McCann remains “surprised” at Janet’s level of progress and still has an image in his head of when he first met her and it’s not a pretty one. I think she was somewhat encouraged by his comments.
We did a little shopping before going home and Janet propelled herself around parking lots and stores really well and to the point of tiring. So much so that she called her own nap time shortly after getting home and slept for an hour and a half. A refreshed Janet did an outstanding job helping with dinner and was a lot of fun the whole evening at home, singing and just being happy. Her transfers were consistently better today and she knew enough to say no to a glass of wine with dinner, saying, “I have to go back to school tonight”. Back at Connect I noticed a little improvement in her one legged bike riding and she got a good hamstring stretch using the Standing Frame.
A very busy and successful day ended with some reading of Open and we got quite a few chuckles tonight and Janet stayed awake for the entire session. Praying for an energetic and productive tomorrow.