Where are my spoons?
Elizabeth is lovely. She is sweet, gentle and caring. She loves to clean while Gilly sleeps, but I was unprepared for instructions in this arena. She took initiative and organized some of my kitchen drawers and cupboards; problem is I like to know where all my utensils are, so it’s a little alienating. She wants to know how to use my washing machine and where the cleaning products are kept…if I had time to spend with her I could show her. All in good time. I reminded her that the #1 priority is Gilly’s comfort and safety and she wholeheartedly agreed. We’ll manage to strike a balance; my house certainly can use some shining around the edges. I just have to find a way to break it to her gently and ensure that she does not move my stuff.
Last night went smoothly. Gilly spent the night on his chair downstairs, refusing to come upstairs. I checked on him periodically, but I managed to sleep well in between. He agreed to mont the stairs at 6:30 a.m. just as I got busy preparing platters for Gilly and notes for Elizabeth. I was unperturbed, knowing that Elizabeth would give him breakfast and lunch, which she did. I had a peaceful start to my day, and I’m sure my students noticed the difference in my demeanor between this morning and yesterday’s harried entrance. All went smoothly throughout the day.
I was lucky enough to get a lunch hour walk in with Cathy today in between the raindrops (thanks, good friend). We both needed the air and exercize. I missed yoga cass yesterday because I was so stressed out before leaving the house that I neglected to prepare myself lunch. I figured I'd faint during class, so stayed back to eat cafeteria food instead. It was a wise choice, but I'll be sure to prepare my lunch on Monday evenings from now on because yoga class is too precious to miss.
I realize now how true it is that lost sleep can never be made up; I am more tired now than I was yesterday at this time. I think that a more relaxed day allowed me to find time to feel my body’s true physical state; exhausted is an understatement. I’m off to bed now to try and regain some lost energy for tomorrow’s long day; work from 8:30 to 2:00 followed by a 2:30 rendez-vous with Gilly at the Jewish. My mom will drop Gilly and Elizabeth off at 1:30 for physio, and I’ll take over at 2:30 for the pre-Kavan blood test. We have a scheduled visit with the CNR crew at 3:00 and Dr. Kavan at 3:40. A whirlwind of medical intervention in one fell swoop.
I am guessing that Dr. Kavan will take some time to consider the pros and cons of continuing with Temodal, but he may order some tests before making his final verdict. My instinct tells me that it is too taxing, but my mind is open to at least listening to and trying to understand a potentially contrasting viewpoint.
I assume Thi will report on Gilly’s diminishing strength, particularly on his right side, but I do not think they will find a weight loss; we’ve yet to see. His deteriorating motor control and balance will be discussed as well, I assume. I cannot imagine what they will say, but I’m hoping they’ll continue to believe, as Thi has up until our most recent visit, that physio still has its merits and is a worthwhile endeavor.
The OT at the Neuro who is replacing Robert called this afternoon to say that she will have Maria, the neuro-oncology nurse call me tomorrow with some suggestions. I’m not holding my breath, because this is the woman who never called back when I was concerned about Gilly having been in contact with pneumonia a few months ago. Who knows? Perhaps she will redeem herself and follow through this time. She was one of the reasons I decided to switch from the Neuro to the Jewish. I suppose she deserves another chance; I’d rather have ample information from a variety of sources at my disposal. The OT from the CSSS will be here on Friday morning to make further suggestions.
Gilly is slightly less tired than he was yesterday. Gilly's friend Emma from our favourite fruit store sent him a care package of fruit that he loves (mango and fresh figs) this evening. He devoured 2 full plates, and he looks content as can be. His appetite is still there, especially for certain foods. Fruit is always a hit.
Again, while watching t.v. this evening he laughed aloud. I asked if he can see better. He answered affirmatively (although his answers are not always accurate). I reminded him that we are scheduled to see the eye docotr on friday afternoon. I wonder how the optometrist will manage conducting a proper, accurate eye exam now that Gilly's responses are difficult to comprehend. I guess I'll find out on Friday.
I am taking a blog night off tomorrow; I have a date with my friend Trudy. I’m allowing myself some much needed respite in hopes that the old adage is true; a change is as good as a rest.
Last night went smoothly. Gilly spent the night on his chair downstairs, refusing to come upstairs. I checked on him periodically, but I managed to sleep well in between. He agreed to mont the stairs at 6:30 a.m. just as I got busy preparing platters for Gilly and notes for Elizabeth. I was unperturbed, knowing that Elizabeth would give him breakfast and lunch, which she did. I had a peaceful start to my day, and I’m sure my students noticed the difference in my demeanor between this morning and yesterday’s harried entrance. All went smoothly throughout the day.
I was lucky enough to get a lunch hour walk in with Cathy today in between the raindrops (thanks, good friend). We both needed the air and exercize. I missed yoga cass yesterday because I was so stressed out before leaving the house that I neglected to prepare myself lunch. I figured I'd faint during class, so stayed back to eat cafeteria food instead. It was a wise choice, but I'll be sure to prepare my lunch on Monday evenings from now on because yoga class is too precious to miss.
I realize now how true it is that lost sleep can never be made up; I am more tired now than I was yesterday at this time. I think that a more relaxed day allowed me to find time to feel my body’s true physical state; exhausted is an understatement. I’m off to bed now to try and regain some lost energy for tomorrow’s long day; work from 8:30 to 2:00 followed by a 2:30 rendez-vous with Gilly at the Jewish. My mom will drop Gilly and Elizabeth off at 1:30 for physio, and I’ll take over at 2:30 for the pre-Kavan blood test. We have a scheduled visit with the CNR crew at 3:00 and Dr. Kavan at 3:40. A whirlwind of medical intervention in one fell swoop.
I am guessing that Dr. Kavan will take some time to consider the pros and cons of continuing with Temodal, but he may order some tests before making his final verdict. My instinct tells me that it is too taxing, but my mind is open to at least listening to and trying to understand a potentially contrasting viewpoint.
I assume Thi will report on Gilly’s diminishing strength, particularly on his right side, but I do not think they will find a weight loss; we’ve yet to see. His deteriorating motor control and balance will be discussed as well, I assume. I cannot imagine what they will say, but I’m hoping they’ll continue to believe, as Thi has up until our most recent visit, that physio still has its merits and is a worthwhile endeavor.
The OT at the Neuro who is replacing Robert called this afternoon to say that she will have Maria, the neuro-oncology nurse call me tomorrow with some suggestions. I’m not holding my breath, because this is the woman who never called back when I was concerned about Gilly having been in contact with pneumonia a few months ago. Who knows? Perhaps she will redeem herself and follow through this time. She was one of the reasons I decided to switch from the Neuro to the Jewish. I suppose she deserves another chance; I’d rather have ample information from a variety of sources at my disposal. The OT from the CSSS will be here on Friday morning to make further suggestions.
Gilly is slightly less tired than he was yesterday. Gilly's friend Emma from our favourite fruit store sent him a care package of fruit that he loves (mango and fresh figs) this evening. He devoured 2 full plates, and he looks content as can be. His appetite is still there, especially for certain foods. Fruit is always a hit.
Again, while watching t.v. this evening he laughed aloud. I asked if he can see better. He answered affirmatively (although his answers are not always accurate). I reminded him that we are scheduled to see the eye docotr on friday afternoon. I wonder how the optometrist will manage conducting a proper, accurate eye exam now that Gilly's responses are difficult to comprehend. I guess I'll find out on Friday.
I am taking a blog night off tomorrow; I have a date with my friend Trudy. I’m allowing myself some much needed respite in hopes that the old adage is true; a change is as good as a rest.
posted by Gilly at 8:50 PM
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