On October 15 Fredi turned 68. As you can see she has come a long way.
We had just a small celebration with August, Sharon, Daniel and I. It was perfect.
Monday, October 20, 2008
Friday, October 10, 2008
7 weeks later - 10-10-08
Hello everyone,
I just wanted to let you all know how Fredi is progressing at home.
She came home on August 25 so it has been 7 weeks.
She gets stronger all the time and we are all pretty much getting along. August really likes having her around but it is really interesting living in this house with it this full. Sure there is a lot of space but there has never been more than two people living here at a time. Now there are 4.
Fredi has come a long way in terms of her strength. On the day she arrived home she had to stop two times on the way up the stairs to rest. Now she goes all the way up without stopping and alternates with her feet. It is really incredible.
Last weekend I took her to Shelter Island. Thank you Sue. As you can imagine that was REALLY special for her. She thought she would never see it again. Of course she also thought she would never see her apartment again. Now she has seen both. While we were there she was able to practice walking over grass and gravel. That wasn’t easy for her. She also got in and out of the car. She hasn’t been in a real, low to the ground since she got sick. We even went to the Old Navy at the mall to look for a pair of pants.
Next week she has another birthday coming up. Maybe she will look forward to this one a little more.
As far as her becoming more independent, that will continue to be a struggle. Her bed (which is the one she had on Shelter Island) was very low and she couldn’t get out of it by herself. Thanks to her cousins, Lynne and Valerie we are got bed risers and a handrail that has made doing that much easier. Now she can take herself to the bathroom. As I said in an earlier post, Medicaid will pay for a $1000 hospital bed but not for a few small items that can make a regular bed more accessible for someone disabled. It is crazy..
Meanwhile, she is receiving OT and PT three times a week and is getting stronger. She can also get out of her wheel chair by herself and she has a chair that is higher than most (kind of a bar seat) that also makes it easier for her to be independent. It is hard to imagine but her knees do not bend to a full 90 degrees. This is why she can’t get out of low seats. Imagine what it would be like to get out of a chair with your feet in front of, rather than under, your knees. Try it. It is really hard.
I am also encouraging her to do more things for herself. Her aids make her meals and I am speaking to her therapists about her being able to engage in more life skills tasks like standing long enough to make a sandwich or coffee or get something out of the fridge.
Her aids are kind of funny. They help by doing her laundry, getting her cleaned up, helping her to the bathroom, going on appointments with her and fixing her meals. The challenge is that they aren’t very creative when it comes to what’s in the fridge and what is available in there. I am trying to keep foods that Fredi likes around but if it isn’t ham and cheese or a can of soup, these women don’t seem to know what to do. If the fridge is full of food that we all like they say there isn’t anything if there aren’t any traditional sandwich fixings. One of them said that there wasn’t any cheese because there wasn’t any sliced American cheese in there. I said to her, “what about the big chunk of cheddar?” Her response was that is wasn’t sliced. I reminded her that we have knives. Plus there were a bunch of other things in there; veggie burgers, tortillas, Manchego cheese, a HUGE jar of marinated artichokes, salad greens, eggs, pickles, yogurt, pasta, rice…. You get the picture. I told Fredi that she should go into the kitchen with them to scope out the fridge. I guess we’re just too gourmet.
Another thing. Fredi survived August's 6th birthday party the week after she arrived home. On August 30 we hosted about 17 6 year olds and their parents and we all survived. I think Fredi may have even had a good time. It is good sometimes to be surrounded by so much unfettered energy.
I just wanted to let you all know how Fredi is progressing at home.
She came home on August 25 so it has been 7 weeks.
She gets stronger all the time and we are all pretty much getting along. August really likes having her around but it is really interesting living in this house with it this full. Sure there is a lot of space but there has never been more than two people living here at a time. Now there are 4.
Fredi has come a long way in terms of her strength. On the day she arrived home she had to stop two times on the way up the stairs to rest. Now she goes all the way up without stopping and alternates with her feet. It is really incredible.
Last weekend I took her to Shelter Island. Thank you Sue. As you can imagine that was REALLY special for her. She thought she would never see it again. Of course she also thought she would never see her apartment again. Now she has seen both. While we were there she was able to practice walking over grass and gravel. That wasn’t easy for her. She also got in and out of the car. She hasn’t been in a real, low to the ground since she got sick. We even went to the Old Navy at the mall to look for a pair of pants.
Next week she has another birthday coming up. Maybe she will look forward to this one a little more.
As far as her becoming more independent, that will continue to be a struggle. Her bed (which is the one she had on Shelter Island) was very low and she couldn’t get out of it by herself. Thanks to her cousins, Lynne and Valerie we are got bed risers and a handrail that has made doing that much easier. Now she can take herself to the bathroom. As I said in an earlier post, Medicaid will pay for a $1000 hospital bed but not for a few small items that can make a regular bed more accessible for someone disabled. It is crazy..
Meanwhile, she is receiving OT and PT three times a week and is getting stronger. She can also get out of her wheel chair by herself and she has a chair that is higher than most (kind of a bar seat) that also makes it easier for her to be independent. It is hard to imagine but her knees do not bend to a full 90 degrees. This is why she can’t get out of low seats. Imagine what it would be like to get out of a chair with your feet in front of, rather than under, your knees. Try it. It is really hard.
I am also encouraging her to do more things for herself. Her aids make her meals and I am speaking to her therapists about her being able to engage in more life skills tasks like standing long enough to make a sandwich or coffee or get something out of the fridge.
Her aids are kind of funny. They help by doing her laundry, getting her cleaned up, helping her to the bathroom, going on appointments with her and fixing her meals. The challenge is that they aren’t very creative when it comes to what’s in the fridge and what is available in there. I am trying to keep foods that Fredi likes around but if it isn’t ham and cheese or a can of soup, these women don’t seem to know what to do. If the fridge is full of food that we all like they say there isn’t anything if there aren’t any traditional sandwich fixings. One of them said that there wasn’t any cheese because there wasn’t any sliced American cheese in there. I said to her, “what about the big chunk of cheddar?” Her response was that is wasn’t sliced. I reminded her that we have knives. Plus there were a bunch of other things in there; veggie burgers, tortillas, Manchego cheese, a HUGE jar of marinated artichokes, salad greens, eggs, pickles, yogurt, pasta, rice…. You get the picture. I told Fredi that she should go into the kitchen with them to scope out the fridge. I guess we’re just too gourmet.
Another thing. Fredi survived August's 6th birthday party the week after she arrived home. On August 30 we hosted about 17 6 year olds and their parents and we all survived. I think Fredi may have even had a good time. It is good sometimes to be surrounded by so much unfettered energy.
Sunday, August 31, 2008
What Fredi came home with
I forgot to let everyone know what we are laughing at this week.
The day before Fredi was supposed to arrive at home (Monday) I told her that I might not be able to pick up her boxes until Tuesday. Because of that it would be a good idea if she packed what she would need initially for overnight; a toothbrush, something to sleep in, a change of clothes....
She arrived home the next day with:
a bag of paper (information and documents she had collected since last July) She really needed that?!
3 half full bags of candy
a toothbrush
That's all.
She would make a terrible girl scout or Farm and Wilderness camper.
Thursday, August 28, 2008
Fredi Has Come Home
Well. It has finally happened.
Fredi has returned home to 11th Street.
No your eyes aren’t deceiving you.
After 19 months Fredi was delivered home Monday by ambulette accompanied by an aid.
No, we didn’t have a party although I was planning one. With all the preparation; getting what we needed, cleaning out a room for her, trying to spend a few days away, planning for August’s 6 birthday party, getting ready for school.... I have just been overwhelmed so… no party. At least not for her right now. We are expecting about 30 people on Saturday for August’s 6th birthday though. Heaven help me.
It was an emotional return for her. Only August and I were here and we made it up the stairs slowly. She rested on two landings sitting in her chair for a few minutes before continuing. When she saw the apartment she cried. So the question now is, what next. As glad as she is to be here the climax is over and now we need to think about the next steps.
She is still challenged by her body but her mind works and she is wants to feel useful again. There is work to consider and how to get it done from the apartment. She has already had a timely call from a referral for career counseling and we will see what else the future holds.
I also think that she is challenged by not being in a controlled environment. She was saying that she was bored at Amsterdam House and I told her that she would be bored at home too. We are learning how to make the most use of her aids who, so far, mostly do nothing.
On Friday I am going to get her out of the house again for a walk around the neighborhood and probably the dentist. Coming and going kind of need to be a scheduled event at this point so that is when we are going to try the down and up. Wish us luck.
For the immediate future she can be reached at 212-243-4675 or Verizon wireless 347-461-3556 and mail should be addressed to her at, 348 West 11th St, #4A, New York, New York, 10014. She can also be e-mailed at fjbalzano@emr-trends.com. We are expecting the cable guy today to install the router for the computer so she can have easy access to her e-mail and the Internet. Send her a note and she will be able to access it later barring any unforeseen circumstances.
Later that day...
The unforeseen circumstances occurred and while the router has been installed we are unable to connect it to her computer at this time. The only internet machine is upstairs and that makes it hard for her to use. Send notes anyway and I will print them out and give them to her.
Tracy
Fredi has returned home to 11th Street.
No your eyes aren’t deceiving you.
After 19 months Fredi was delivered home Monday by ambulette accompanied by an aid.
No, we didn’t have a party although I was planning one. With all the preparation; getting what we needed, cleaning out a room for her, trying to spend a few days away, planning for August’s 6 birthday party, getting ready for school.... I have just been overwhelmed so… no party. At least not for her right now. We are expecting about 30 people on Saturday for August’s 6th birthday though. Heaven help me.
It was an emotional return for her. Only August and I were here and we made it up the stairs slowly. She rested on two landings sitting in her chair for a few minutes before continuing. When she saw the apartment she cried. So the question now is, what next. As glad as she is to be here the climax is over and now we need to think about the next steps.
She is still challenged by her body but her mind works and she is wants to feel useful again. There is work to consider and how to get it done from the apartment. She has already had a timely call from a referral for career counseling and we will see what else the future holds.
I also think that she is challenged by not being in a controlled environment. She was saying that she was bored at Amsterdam House and I told her that she would be bored at home too. We are learning how to make the most use of her aids who, so far, mostly do nothing.
On Friday I am going to get her out of the house again for a walk around the neighborhood and probably the dentist. Coming and going kind of need to be a scheduled event at this point so that is when we are going to try the down and up. Wish us luck.
For the immediate future she can be reached at 212-243-4675 or Verizon wireless 347-461-3556 and mail should be addressed to her at, 348 West 11th St, #4A, New York, New York, 10014. She can also be e-mailed at fjbalzano@emr-trends.com. We are expecting the cable guy today to install the router for the computer so she can have easy access to her e-mail and the Internet. Send her a note and she will be able to access it later barring any unforeseen circumstances.
Later that day...
The unforeseen circumstances occurred and while the router has been installed we are unable to connect it to her computer at this time. The only internet machine is upstairs and that makes it hard for her to use. Send notes anyway and I will print them out and give them to her.
Tracy
Saturday, July 19, 2008
July 18 2008
Well it has finally happened. Fredi has been given the green light to come home. Right now that is scheduled for September 1.
Most recently she walked up 24 stairs, almost 1/2 of the 49 required to get to the apartment. She becomes more independent every day. Earlier this month she had her PEG feeding tube removed. That makes her tube free.
Now there is a whole new set of challenges. I need to get a full size box spring, commode, walker, bed rail, life alert, wheel chair, bedding, pillows and a light folding chair with arm rests. That is all I can think of right now. If anyone has had the unpleasant experience of caring for someone with a disability and has any of that stuff please let me know. We will be sorting out what and how much will be covered by insurance.
Back in June Fredi attended her 50th high school reunion accompanied by her sister. While things went well she began discovering some of the challenges of being in a wheel chair.
She was below much of the conversation which made it difficult to participate. Now when we go out she sees first hand the fact that when you are in a wheel chair people think you are stupid.
Anyway, she is looking forward to a lot. Spending time with August, getting back to work, seeing her apartment. She hasn't been home in 18 months. March 1, 2007.
Tuesday, May 13, 2008
May 28, 2008
Well we have taken Fredi to the ballet and on June 13 she is planning on going to her 50th high school reunion. The staff at the nursing home and I have been flabbergasted by her recovery. She just keeps getting stronger and stronger. It has been a really long haul and will still be but things do continue to improve. Here's how:
Tracheostomy - Her Trach was removed last Friday. I am sooooo happy about that. I remember the day they told me they would be inserting it. She wasn’t able to handle her secretions and was in danger of drowning on her own saliva. It was awful. I really thought we were going to lose her. I didn’t think that thing was ever going to come out, but it has. She still has her feeding tube and I think that is appropriate since she is still on a lot of medication. If she didn't have the tube she would have to swallow all those pills and that would make her very unhappy. Now they just grind them up and inject them directly into her stomach.
Talking - After not being able to speak for the better part of a year Fredi has a lot to say. She complains often and entertains her nurses and CNAs. They are seeing a side of her that they never have before; smart, funny, active.
Eating - After not having anything in her mouth for the better part of a year Fredi eats almost anything that you put in front of her. I brought her some asparagus from the farmer's market and she recently had Chinese food for the first time compliments of Christina Wright but she is happy with the food they give her at Amsterdam House. There is still some danger that she will aspirate so while she can have water between meals she cannot drink unthickened liquid with food. There is the possibility that water could carry a small morsel into her lungs and then the whole process would start all over. The last thing we need is another pneumonia.
Cutting Food - When Fredi as at Village Nursing Home last year she couldn't cut her own food. Now she can handle a knife and fork quite well.
Walking – Fredi continues to use her legs more and more. Recently she walked 50 feet and now she is using one helper rather than two, one or either side. She is also learning to maneuver her walker so that she can sit on the toilet. She hasn’t done that in a year either.
Heartburn and Acid Reflux - With the repair of her hiatal hernia Fredi hasn't had any heartburn which was pretty constant before she got sick.
TTFN
Tracy
Tracheostomy - Her Trach was removed last Friday. I am sooooo happy about that. I remember the day they told me they would be inserting it. She wasn’t able to handle her secretions and was in danger of drowning on her own saliva. It was awful. I really thought we were going to lose her. I didn’t think that thing was ever going to come out, but it has. She still has her feeding tube and I think that is appropriate since she is still on a lot of medication. If she didn't have the tube she would have to swallow all those pills and that would make her very unhappy. Now they just grind them up and inject them directly into her stomach.
Talking - After not being able to speak for the better part of a year Fredi has a lot to say. She complains often and entertains her nurses and CNAs. They are seeing a side of her that they never have before; smart, funny, active.
Eating - After not having anything in her mouth for the better part of a year Fredi eats almost anything that you put in front of her. I brought her some asparagus from the farmer's market and she recently had Chinese food for the first time compliments of Christina Wright but she is happy with the food they give her at Amsterdam House. There is still some danger that she will aspirate so while she can have water between meals she cannot drink unthickened liquid with food. There is the possibility that water could carry a small morsel into her lungs and then the whole process would start all over. The last thing we need is another pneumonia.
Cutting Food - When Fredi as at Village Nursing Home last year she couldn't cut her own food. Now she can handle a knife and fork quite well.
Walking – Fredi continues to use her legs more and more. Recently she walked 50 feet and now she is using one helper rather than two, one or either side. She is also learning to maneuver her walker so that she can sit on the toilet. She hasn’t done that in a year either.
Heartburn and Acid Reflux - With the repair of her hiatal hernia Fredi hasn't had any heartburn which was pretty constant before she got sick.
TTFN
Tracy
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