Here’s a little something I was asked to post to this blog, so here goes:

I am Jenny?s sister, Melissa, and am participating in the LA Triathlon on September 11th, 2005 to honor Jenny and her accomplishments as well as to raise money to donate to the American Stroke Association. You can help by clicking on this link to donate to the cause:

OK, everyone, time to step up to the table and pitch in!

Oct 30, 2004

Great things have happened since the last time I wrote. We finally broke a huge barrier when it comes to Jenny using the computer. Her vision has been good enough to do most things, except read. She has been working a mouse better each and every day, but not able to read print. We finally hooked up a computer to a large screen tv to see how she could do. Right away, she checked her e-mail and cried. She wrote a message to me, and cried. She wrote a message to her parents, and cried. They were all really good cries. Her typing skills are limited, but she can hunt and peck a couple sentences before exhausting herself. The whole process is still not perfect, but it works for us.

For those who write to Jenny’s own e-mail address, there are a few things that will help her see better. Type in a bold, all caps, larger font (at least 18), and make sure to double space lines. Double spacing is the biggest thing she needs to see since it gets all jumbled up with her blurry vision. I wanted her to write on this web page, but she was worried that people would think that she was more capable than she actually is. So, just so everyone knows- Jenny still struggles with the most basic tasks and needs assitance with almost every thing a person does. With that said, I hope to convince her to write at some time.

Outpatient therapy is wonderful! She ended up with a different speech therapist who is perfect for Jenny. Jenny most likely went as far with homebased therapy as was possible, so this was a good move at a good time.

May 16,2004

Jenny has shown much improvement and seems to have dropped her temp and is less congested. Her condition was associated with a UTI as well. These are the things we were told we would have to address on a frequent basis throughout Jenny’s life. Jenny has a new trache that has irritated her throat and made itdifficult to swallow. She is unable to trun her head to the right without the trache causing discomfort or coughing. Everyone we tell about this seems to think it is okay, but I feel the trache does more harm than good. Jenny was hoping to have it out prior to coming home. I’m not sure how her discharge will work out due to her current health status.

She has experineced more spasms due to the discomfort and coughing. All it takes is for a cough or strong feelings of emotion to send her into painful, uncontrolable limb etension/spasms where Jenny’s head, arms, and legs twist and stretch in uncommon ways. It is difficult to discuss some topics with or near her without causing emotions that lead to spasms. I fear what will happen once we return to more activity in the community since the initial experiences will undoubtedly be emotional for her.

As with anyone who visits with Jenny, especially for the first encounter, I would encourge people to greet her in a more upbeat fashion and let Jenny know of their love and that they miss her without bearing their soul and causing more emotional turmoil than needed. Hopefully, there will be a day when these spasms will cease and be more controllable. Interestingly enough, even though Jenny has been in more pain and discomfort this last week, she has beeen more concerned with others. She completed the lengthy processing of spelling out her desire for me to start putting together Zach’s birthday party in July (which waiting this long to start is late for Jenny). She had bought all the party supplies months ago on a great sale, so I guess she is not starting too late. I had to promise that I would be anal about planning before she felt confident about leaving the topic alone so I could return to figuring out what I could do to make her feel better.

Looking for links and books

Brian has sent me some web links and book references that talk about some miraculous recoveries from locked-in syndrome. I’m working on creating some special web pages so that this information can be shared with everyone.

While I’m putting that together, it would be nice if anyone who has found good links or book references would let me know about them. That will allow me to make these pages even more useful.