Kayla Quote: "May your heartaches be forgotten.
May no tears be spilled."
Short Synopsis: Kayla did a 360! Uncle Chris and cousin Susan visit her and bring her spirits up. She plays games with them.
Long Story: At 7:00 in the morning, it is pouring rain. Rain is a good thing as droughts are scary. People say they don't like the rain but for me it is a blessed thing, a good omen. Drench the earth please and thank you oh dearest God.
Today Pops and Lori leave to head up to their New Hampshire paradise home on the lake. They have been a wonderful support system. Our dishwasher has been broken so all of us have been doing the dishes by hand, side by side. Mike is always happy when his parents are about.
In the basement is a new wooden laundry stand. Mike, on his quest for all things "green" and good for the environment is now hanging his wet laundry on this wooden stand to save the energy that would have been used for the dryer. I respect all of his new (and old) thinking but I am not going to give up my dryer! It looks wonderful seeing his few clothes hang away!
I locked in the cats as I am planting the public island down below. This year I put in pink petunias and a sweet potato plant. Beauteous! The lawn looks fabulous and very green. This is the tail end of Spring and a good time for beauty in the northeast.
Mike finds out that Medicare will cover eight hours of home care if we need it when we bring Kayla home on her assisted device. We will have to figure out how much help we need. Since I am not working now, I can cover my daughter for many hours.
Every year I go to the Memorial Parade with my dear friend Nancy. We roam up and down the crowded street and feel very patriotic. There is usually a "fly by" with a military plane that is quite fast, breaking the sound barrier. It rumbles through your body and you realize that this is a great country to live in where there are freedoms found no where else in the world. For me, the top medical care has saved my daughter many, many times.
I see Steve Palmioto and his big brood. His wife Mary Ellen is on a truck in the parade waving to us. I see my dear friend Lisa Conway too. The sun is out and it is hot.
At 4 p.m. I drive down to visit "the muffin." I go up to our corner to inspect again. There are kids running around with our little blackboard but they put it down. I take it and write "Are you here Debbie? Are you here Beth? Stephanie"
Am pleasantly surprised when I see Kayla in a special waiting room playing a card game UNO with Uncle Chris and cousin Susan. There is lots and lots of laughter. They stay for hours!
I am sent out to buy some chicken parmesan for Kayla. It is a favorite food made extremely well at Famiglias. In fact, all the small hole in the wall restaurants along the street outside the hospital have some of the best food in the world. This is New York City after all. Only the best little eateries survive. The best flan is just up the way and I have tried flan everywhere. There is no comparison anywhere else. "Carrot Top" has the best recipe and it is smooth with no curdles. Perfect!
I leave for Tarrytown at 9:30 p.m. There is no air conditioning. It is broken. They give me a small, funky fan. I sink into my couch bed and look out at the Hudson River...
- - - - - - - - -
On the internet they are reporting about Violet's leg band, the one that has caused her a lot of trouble. It is quite swolen and looks painful. The belief is that it has been on her leg for more than four years. The research says that it was put on October 3, 2006, her hatchling year, in New Jersey near the Delaware Water Gap as part of an ongoing study of hawk migration patterns.
Later, in October 2010, a wildlife photographer photographed Violet (presumably - red-tailed hawks all look alike) and her leg was swollen with the band jammed halfway up her shin. He brought it to the attention of nature authorities. There was talk about capturing the bird and removing the band. Five months later her leg was suddenly worsening. Experts felt capturing her would be impossible.
The 40-year study for migrating hawks revealed a reduction in fall red-tailed hawk migration probably due to climate change, not a reduction in hawk population.
Experts believe that Violet probably sustained this injury in the last year from a bite from her prey, such as a squirrel. The swelling pushed the band up from her ankle to her shin where it lodged. Sitting on her eggs made her more sedentary and probably worsened her condition.
According to Dr. Bunting, a wildlife veterinarian, "the swelling could be due to scar tissue or fluid retention, neither of which is life-threatening, and it is not clear what role the band is playing in the injury." When they inspected her leg up on the New York University ledge, they found there was a tiny bit of space between her leg and the band.
- - - - - - - - -
To: Mordechai
From: Stephanie
cc: Steve, Ross, Rabbi Cohen
Re: Your Mom
Mordechai:
Are you telling me that she is still at Columbia Hospital? That is great news - they give the best care.
Kayla is progressing physically but she is depressed so it affects her overall state. She needs to help herself and doesn't listen to anyone around her. This is problematic but Mike and I keep trying to reach her and help her. Her anxiety is her number one enemy. Physically she is walking, talking and eating again. She no longer has a trach but her lungs still need support as she recovers from pneumonia. She has a hole in her throat which will close up over time and it has a patch over it. She walks with physical therapy around the hall pushing her luggage cart machine device.
My plan is to keep loving her and making her happy with the little things she wants. She knows exactly what she desires - a certain fruit smoothie or some special shampoo for her hair. My overall plan is to improve her nutrition and help her to become physically stronger so she will be in a better state to receive a heart. As a smart mother, there is nothing more that I can do. I also plan to have meetings with key people to become part of the team. They have left me out and it pisses me off! Now they will see the power of an angry mother who wants life for her child. They are off and running in directions which I don't believe in.
Let your Aunt Debbie know I am up on the 7th floor and would love to say hello to her. I keep writing messages on the chalkboard to Beth and will now include messages to Aunt Debbie.
The triathlon? Yesterday I surprised myself and did the 14 mile bike run of the course with ease, no problems. Did it in an hour and there were many up hills. The tri is on Sunday, June 5th - less than a week away. I have not been able to train, but I am sure all the walking up New York City hills by the hospital and up the back stairs behind the elevators has kept my fitness up. I did keep up the swimming training over the last few months. Normally I would have done the bike course 10-12 times before the race but this time, I have done it only once, so far. Taking care of Kayla has sidelined my life, but I will prevail! I will do the race and not worry about it - just have fun and concentrate on finishing reasonably.
We have 7 people from our Wolfpit Running Club who are signed up for the race - 4 men and 3 women. Rick, Joe, Robert (first time) and Dave are the men. Women are me (have done it twice), Kathy (this is her 4th time) and Lisa (3 or 4 times as well). This is the 5th year of this now very popular race. It had to be closed off at 400 participants. The first year it had 200 entrants.
I train mostly with Kathy, one of my dearest friends and a tremendous role model. She is 62 and a far better athlete than me! We did the biking together yesterday and we had great fun! I am fealess on the dowhills (it scares her) yet she is far stronger on the uphills. She generally finishes a few minutes ahead of me but she pushes me and that is grand! We also swim together all the time. The running club is a second family for all of us, having forged friendships for over 35 years. All of us have one common thread - we like to live healthy, fit lives.
Are you keeping up with your running?
Hope you and your family are well,
Regards,
Stephanie
May no tears be spilled."
Short Synopsis: Kayla did a 360! Uncle Chris and cousin Susan visit her and bring her spirits up. She plays games with them.
Long Story: At 7:00 in the morning, it is pouring rain. Rain is a good thing as droughts are scary. People say they don't like the rain but for me it is a blessed thing, a good omen. Drench the earth please and thank you oh dearest God.
Today Pops and Lori leave to head up to their New Hampshire paradise home on the lake. They have been a wonderful support system. Our dishwasher has been broken so all of us have been doing the dishes by hand, side by side. Mike is always happy when his parents are about.
In the basement is a new wooden laundry stand. Mike, on his quest for all things "green" and good for the environment is now hanging his wet laundry on this wooden stand to save the energy that would have been used for the dryer. I respect all of his new (and old) thinking but I am not going to give up my dryer! It looks wonderful seeing his few clothes hang away!
I locked in the cats as I am planting the public island down below. This year I put in pink petunias and a sweet potato plant. Beauteous! The lawn looks fabulous and very green. This is the tail end of Spring and a good time for beauty in the northeast.
Mike finds out that Medicare will cover eight hours of home care if we need it when we bring Kayla home on her assisted device. We will have to figure out how much help we need. Since I am not working now, I can cover my daughter for many hours.
Every year I go to the Memorial Parade with my dear friend Nancy. We roam up and down the crowded street and feel very patriotic. There is usually a "fly by" with a military plane that is quite fast, breaking the sound barrier. It rumbles through your body and you realize that this is a great country to live in where there are freedoms found no where else in the world. For me, the top medical care has saved my daughter many, many times.
I see Steve Palmioto and his big brood. His wife Mary Ellen is on a truck in the parade waving to us. I see my dear friend Lisa Conway too. The sun is out and it is hot.
At 4 p.m. I drive down to visit "the muffin." I go up to our corner to inspect again. There are kids running around with our little blackboard but they put it down. I take it and write "Are you here Debbie? Are you here Beth? Stephanie"
Am pleasantly surprised when I see Kayla in a special waiting room playing a card game UNO with Uncle Chris and cousin Susan. There is lots and lots of laughter. They stay for hours!
I am sent out to buy some chicken parmesan for Kayla. It is a favorite food made extremely well at Famiglias. In fact, all the small hole in the wall restaurants along the street outside the hospital have some of the best food in the world. This is New York City after all. Only the best little eateries survive. The best flan is just up the way and I have tried flan everywhere. There is no comparison anywhere else. "Carrot Top" has the best recipe and it is smooth with no curdles. Perfect!
I leave for Tarrytown at 9:30 p.m. There is no air conditioning. It is broken. They give me a small, funky fan. I sink into my couch bed and look out at the Hudson River...
- - - - - - - - -
On the internet they are reporting about Violet's leg band, the one that has caused her a lot of trouble. It is quite swolen and looks painful. The belief is that it has been on her leg for more than four years. The research says that it was put on October 3, 2006, her hatchling year, in New Jersey near the Delaware Water Gap as part of an ongoing study of hawk migration patterns.
Later, in October 2010, a wildlife photographer photographed Violet (presumably - red-tailed hawks all look alike) and her leg was swollen with the band jammed halfway up her shin. He brought it to the attention of nature authorities. There was talk about capturing the bird and removing the band. Five months later her leg was suddenly worsening. Experts felt capturing her would be impossible.
The 40-year study for migrating hawks revealed a reduction in fall red-tailed hawk migration probably due to climate change, not a reduction in hawk population.
Experts believe that Violet probably sustained this injury in the last year from a bite from her prey, such as a squirrel. The swelling pushed the band up from her ankle to her shin where it lodged. Sitting on her eggs made her more sedentary and probably worsened her condition.
According to Dr. Bunting, a wildlife veterinarian, "the swelling could be due to scar tissue or fluid retention, neither of which is life-threatening, and it is not clear what role the band is playing in the injury." When they inspected her leg up on the New York University ledge, they found there was a tiny bit of space between her leg and the band.
- - - - - - - - -
To: Mordechai
From: Stephanie
cc: Steve, Ross, Rabbi Cohen
Re: Your Mom
Mordechai:
Are you telling me that she is still at Columbia Hospital? That is great news - they give the best care.
Kayla is progressing physically but she is depressed so it affects her overall state. She needs to help herself and doesn't listen to anyone around her. This is problematic but Mike and I keep trying to reach her and help her. Her anxiety is her number one enemy. Physically she is walking, talking and eating again. She no longer has a trach but her lungs still need support as she recovers from pneumonia. She has a hole in her throat which will close up over time and it has a patch over it. She walks with physical therapy around the hall pushing her luggage cart machine device.
My plan is to keep loving her and making her happy with the little things she wants. She knows exactly what she desires - a certain fruit smoothie or some special shampoo for her hair. My overall plan is to improve her nutrition and help her to become physically stronger so she will be in a better state to receive a heart. As a smart mother, there is nothing more that I can do. I also plan to have meetings with key people to become part of the team. They have left me out and it pisses me off! Now they will see the power of an angry mother who wants life for her child. They are off and running in directions which I don't believe in.
Let your Aunt Debbie know I am up on the 7th floor and would love to say hello to her. I keep writing messages on the chalkboard to Beth and will now include messages to Aunt Debbie.
The triathlon? Yesterday I surprised myself and did the 14 mile bike run of the course with ease, no problems. Did it in an hour and there were many up hills. The tri is on Sunday, June 5th - less than a week away. I have not been able to train, but I am sure all the walking up New York City hills by the hospital and up the back stairs behind the elevators has kept my fitness up. I did keep up the swimming training over the last few months. Normally I would have done the bike course 10-12 times before the race but this time, I have done it only once, so far. Taking care of Kayla has sidelined my life, but I will prevail! I will do the race and not worry about it - just have fun and concentrate on finishing reasonably.
We have 7 people from our Wolfpit Running Club who are signed up for the race - 4 men and 3 women. Rick, Joe, Robert (first time) and Dave are the men. Women are me (have done it twice), Kathy (this is her 4th time) and Lisa (3 or 4 times as well). This is the 5th year of this now very popular race. It had to be closed off at 400 participants. The first year it had 200 entrants.
I train mostly with Kathy, one of my dearest friends and a tremendous role model. She is 62 and a far better athlete than me! We did the biking together yesterday and we had great fun! I am fealess on the dowhills (it scares her) yet she is far stronger on the uphills. She generally finishes a few minutes ahead of me but she pushes me and that is grand! We also swim together all the time. The running club is a second family for all of us, having forged friendships for over 35 years. All of us have one common thread - we like to live healthy, fit lives.
Are you keeping up with your running?
Hope you and your family are well,
Regards,
Stephanie
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