It's been a beautiful Sunday in NY. Jilly got her first fresh air in four weeks this afternoon. I had arranged to take her downstairs at about lunchtime and asked Ann Liv to bring baby Lovey (is that a great name or what? It's perfectly descriptive of this little sprite). Several other friends showed up as well, and we all stepped out into the Serenity Garden for awhile. It made for a delightful reintroduction to the outside world, and Jilly was even able to admit to being tired as we headed back upstairs. Jilly babysat for Lovey just a week before the accident and is absolutely smitten with her--as we all were today.
Later Paul, who was a witness to the accident and visited earlier, while Jilly was still asleep, stopped by and met her awake for the first time. She pegged his accent as Australian, but it's actually Irish. Paul was the second car stopped at the intersection, so he saw the accident, covered Jilly with a blanket, and talked to her until the EMTs arrived. This makes him another of our heroes. Paul talked a little about what he had seen. I was afraid this might upset Jilly, but this doesn't seem to have happened. She's becoming more aware of the details every day, straightening them out as she goes along. For a few days she thought she had been "attacked," but now talks about being hit by a car.
Last Christmas Jilly gave Raymond and me a gift certificate to a Cuban restaurant that we used to enjoy decades ago in its earlier, much more modest location and incarnation, before the Underground Gourmet made it famous and expensive in the early seventies. The idea was we should use it when we came here in April for Jilly's show at Dance Theater Workshop. Unfortunately we forgot it on that trip--so tonight, with Jeremy and Katie, we enjoyed a wonderful meal there, toasting Jilly and wishing she were there. I don't know what she would have eaten, though: Maybe black beans and plaintains.
And now begins another week. Who knows what it will bring, but we are more hopeful for Jilly's complete recovery every day.
Our best to all,
Ingrid
Sunday, September 7, 2008
Saturday, September 6, 2008
Saturday, September 7, 2008
On a day when New York was receiving its share of Hurricane Hannah, we were nevertheless able to enjoy some great family time.
This morning Jilly had a great phone conversation with DonnaFaye. Still not sure why she has to be in this place, Jilly is desperate to do everything on her very complicated fall schedule. I am hoping to persuade her that doing even a part of it will depend on how well she does in all her various therapies. She was at least a bit more respectful to today's substitute occupational therapist, not attempting, as far as I could see, to switch roles with her. Our relationship during her teenage years has resurfaced, as she does her best to bargain with me in pursuit of my help in getting out of the hospital.
When I explained to Jilly today that her neurosurgeons will have to clear her for release, she began to question me about the surgeries. I tried to answer her both directly and delicately, first asking her to stop me if it upset her too much. Luckily, my understanding and my sketching skills are too rudimentary to incorporate many disturbing details--but the explanation still upset Jilly. I do hope telling her about it was not a mistake; I just felt she needed to understand how badly she was hurt as part of the process of accepting the treatment period.
With Jeremy and Katie, we managed to pull off an odd little party in one of the public rooms on the floor. Unsuccessfully tring to dodge the raindrops, Raymond and I were able to find a nearby deli with lovely pasta salads, a small portion of which turned out to be the first full serving of anything she has completed. We also bought some goodies, and of course several delicious beverages.
After this rain, I'm here to tell you that it ain't easy being a New Yorker. Every day wears me out--but Raymond and I (knock on wood) remain in excellent health. Just another in our long chain of post 8/11 miracles.
Our best to all,
Ingrid
This morning Jilly had a great phone conversation with DonnaFaye. Still not sure why she has to be in this place, Jilly is desperate to do everything on her very complicated fall schedule. I am hoping to persuade her that doing even a part of it will depend on how well she does in all her various therapies. She was at least a bit more respectful to today's substitute occupational therapist, not attempting, as far as I could see, to switch roles with her. Our relationship during her teenage years has resurfaced, as she does her best to bargain with me in pursuit of my help in getting out of the hospital.
When I explained to Jilly today that her neurosurgeons will have to clear her for release, she began to question me about the surgeries. I tried to answer her both directly and delicately, first asking her to stop me if it upset her too much. Luckily, my understanding and my sketching skills are too rudimentary to incorporate many disturbing details--but the explanation still upset Jilly. I do hope telling her about it was not a mistake; I just felt she needed to understand how badly she was hurt as part of the process of accepting the treatment period.
With Jeremy and Katie, we managed to pull off an odd little party in one of the public rooms on the floor. Unsuccessfully tring to dodge the raindrops, Raymond and I were able to find a nearby deli with lovely pasta salads, a small portion of which turned out to be the first full serving of anything she has completed. We also bought some goodies, and of course several delicious beverages.
After this rain, I'm here to tell you that it ain't easy being a New Yorker. Every day wears me out--but Raymond and I (knock on wood) remain in excellent health. Just another in our long chain of post 8/11 miracles.
Our best to all,
Ingrid
Friday, September 5, 2008
Friday, September 5
What a treat to welcome Jeremy (brother) and future sister-in-law Katie today. They had both gone back to ABQ before Jilly's move to the Rehab floor, so were really seeing her conscious for the first time.
So many stories today, I don't know which to tell.
Occupational and physical therapy sessions wear Jilly out, but she is making her peace with them. Today she walked into the PT room, showed me to a seat, and headed straight for the treadmill. She set the machine for five minutes, with a slowly increasing speed, before the therapist had a chance to tell her what to do. Later she told a friend that the PT was "Ok, but you know..." with a gesture that said "way too athletic." She has promised (threatened?) to give the therapist a ballet barre next week.
Jilly's usual speech therapist was off today, and as all interesting students do, she gave the sub a run for her money. She found one of the exercises silly, and took her own therapeutic approach: "Well, I think if you want to say it that way, you should go for it." At the end of the session, she pretty much switched roles with the therapist, encouraging her to admit that she'd like to be a famous writer. They talked about good memoirists for awhile; then Jilly told her, "You need to get an MFA. You should go to Bard. Or Columbia. A friend of mine went there. She's amazing." The therapist walked out the door shaking her head.
Jilly still can't figure out why so many people are able to visit her in London. She is asking for some details about the accident, but doesn't want to know too much. Wise girl. Two of the wonderful nurses from the ICU came down to see her today, on the verge of tears over how great she looks. She does not remember them at all, of course, but enjoyed the stories of how every fifteen minutes they had to unwind the cords and cables she'd tangled herself in with all her movements.
If I'm this sleepy, it must be the end of another poignant day.
All my best,
Ingrid
So many stories today, I don't know which to tell.
Occupational and physical therapy sessions wear Jilly out, but she is making her peace with them. Today she walked into the PT room, showed me to a seat, and headed straight for the treadmill. She set the machine for five minutes, with a slowly increasing speed, before the therapist had a chance to tell her what to do. Later she told a friend that the PT was "Ok, but you know..." with a gesture that said "way too athletic." She has promised (threatened?) to give the therapist a ballet barre next week.
Jilly's usual speech therapist was off today, and as all interesting students do, she gave the sub a run for her money. She found one of the exercises silly, and took her own therapeutic approach: "Well, I think if you want to say it that way, you should go for it." At the end of the session, she pretty much switched roles with the therapist, encouraging her to admit that she'd like to be a famous writer. They talked about good memoirists for awhile; then Jilly told her, "You need to get an MFA. You should go to Bard. Or Columbia. A friend of mine went there. She's amazing." The therapist walked out the door shaking her head.
Jilly still can't figure out why so many people are able to visit her in London. She is asking for some details about the accident, but doesn't want to know too much. Wise girl. Two of the wonderful nurses from the ICU came down to see her today, on the verge of tears over how great she looks. She does not remember them at all, of course, but enjoyed the stories of how every fifteen minutes they had to unwind the cords and cables she'd tangled herself in with all her movements.
If I'm this sleepy, it must be the end of another poignant day.
All my best,
Ingrid
Thursday, September 4, 2008
Late Thursday, September 4
Yesterday morning when I walked into Jilly's room she was sporting an orange-sherbet trache tube, which replaced the old lime-sherbet one. When I said "Good morning, Jilly. How are you doing today?" she whispered, audibly, "I'm good. How are you." That was enough to make my heart jump, so imagine how I felt this morning when I walked in, saw no sherbet tube at all, and heard her speak the exact same words!
So Jilly can now speak--hoarsely but understandably--and they bring her a tray of food three times a day. She eats a little, but is mostly interested in liquids: vitamin water, regular water, root beer. Now that soy latte is in her reach, it's not what she asks for.
I can't say enough about Jilly's occupational therapist, Rivky, and her physical therapist, whose name I keep forgetting (maybe I'm the one who needs therapy). She starts off the sessions saying she's just too tired, and could they come back later, but they jolly her along until she gives the activities a try. Today, after she had spent several minutes on the treadmill, I asked her how that felt. She answered, "Good. I was thinking maybe I could actually do this."
Some of these stories may sound as if Jilly is almost back to normal, and I don't mean to imply that at all. She's quite frail, still rather shaky, and confused about many things. But people who haven't seen her for a few days are amazed at her progress. We hope to learn more in a meeting with her doctors tomorrow morning.
Meanwhile, I need sleep!
As always, thanks to all.
Ingrid
So Jilly can now speak--hoarsely but understandably--and they bring her a tray of food three times a day. She eats a little, but is mostly interested in liquids: vitamin water, regular water, root beer. Now that soy latte is in her reach, it's not what she asks for.
I can't say enough about Jilly's occupational therapist, Rivky, and her physical therapist, whose name I keep forgetting (maybe I'm the one who needs therapy). She starts off the sessions saying she's just too tired, and could they come back later, but they jolly her along until she gives the activities a try. Today, after she had spent several minutes on the treadmill, I asked her how that felt. She answered, "Good. I was thinking maybe I could actually do this."
Some of these stories may sound as if Jilly is almost back to normal, and I don't mean to imply that at all. She's quite frail, still rather shaky, and confused about many things. But people who haven't seen her for a few days are amazed at her progress. We hope to learn more in a meeting with her doctors tomorrow morning.
Meanwhile, I need sleep!
As always, thanks to all.
Ingrid
Giant Soy Latte In Jilly's Future
Not only was Jillian's trach downgraded in size yesterday but she also passed her swallow test, which means she's one step closer to being allowed to drink that latte she's been demanding. (Very little ice and sweetener!)
Tuesday, September 2, 2008
For New York Friends: Visiting Hours Note
This morning we spoke with the social worker for the rehab floor. The staff has expressed concern that visitors who stay too long are overstimulating Jillian, resulting in less sleep for her at night and consequently a lower ability to concentrate the next day during her therapy sessions. We get so excited by her progress that we forget what a long way she has to go. The therapy is critical; it is her way back to health. So please plan to limit your visits with Jilly to 20 minutes. The two-at-a-time rule also prevails. Either Raymond or I will hover throughout visiting hours around the orange-&-white seats or just beyond, where the less chairs are less colorful but more comfortable. We will call whoever is up wih Jilly to bring down a pass.
Each visit means a lot to Jilly, and to us. Please help us support the staff's efforts and Jilly's recovery by respecting this new rule, which is a compromise between their wishes and ours.
Thank you,
Ingrid
Each visit means a lot to Jilly, and to us. Please help us support the staff's efforts and Jilly's recovery by respecting this new rule, which is a compromise between their wishes and ours.
Thank you,
Ingrid
Monday, September 1, 2008
Labor Day Update
Today, Jilly had many moments of great lucidity ad wit. We have to remind ourselves, and her, that she still has quite a way to go. The hospital's art therapist visited, bringing a brand-new box of oil pastels and a nice fresh pad of art paper. Jilly responded to her well, selecting three colors when asked, but turned away from the materials to her computer, which is where she creates her own art. She's not quite ready for that either, but she did agree to see the therapist tomorrow.
This morning we think she was asking when her occupational therapist, whom she really likes, would be coming. This being a holiday, there was no scheduled therapy at all; I think the art therapist just came in because she wanted to get Jilly started.
Thanks to the resident on the floor, Jilly has her walking privileges back, which is a relief to us. It is much easier to follow in her wake than to keep her in her room or on her wheelchair. Her posture is what it always was, her speed is remarkable, and today we only set off the perimeter alarm once. I blame it on Raymond; anyone who knows me realizes I would never try to help her bust out.
The other rule she asks every visitor to help her break is the ban on beverages. She is not above scooping water from the bathroom sink, and she has made a lunge for a water bottle in my tote more than once.
The end of the day is Jillian's most difficult time, as visitors head for home. She pleads to leave at that time, and is only beginning to understand that she cannot. We talked a bit about the accident today; I got the feeling she thought for a moment she had caused it herself and had perhaps even been driving, but I think we got past that.
We have hard moments, many times a day, but the great kindness of an enormous circle of friends from our world and Jilly's much wider one has become a sacred trust to me. I promise all of you that we will settle for nothing less than a full recovery for our remarkable daughter, and once again thank you all from the bottom of my heart.
This morning we think she was asking when her occupational therapist, whom she really likes, would be coming. This being a holiday, there was no scheduled therapy at all; I think the art therapist just came in because she wanted to get Jilly started.
Thanks to the resident on the floor, Jilly has her walking privileges back, which is a relief to us. It is much easier to follow in her wake than to keep her in her room or on her wheelchair. Her posture is what it always was, her speed is remarkable, and today we only set off the perimeter alarm once. I blame it on Raymond; anyone who knows me realizes I would never try to help her bust out.
The other rule she asks every visitor to help her break is the ban on beverages. She is not above scooping water from the bathroom sink, and she has made a lunge for a water bottle in my tote more than once.
The end of the day is Jillian's most difficult time, as visitors head for home. She pleads to leave at that time, and is only beginning to understand that she cannot. We talked a bit about the accident today; I got the feeling she thought for a moment she had caused it herself and had perhaps even been driving, but I think we got past that.
We have hard moments, many times a day, but the great kindness of an enormous circle of friends from our world and Jilly's much wider one has become a sacred trust to me. I promise all of you that we will settle for nothing less than a full recovery for our remarkable daughter, and once again thank you all from the bottom of my heart.
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