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.