We are preparing for our second trip, this time with our whole family. We seem to think that we worled out the wrinkles of our last travel experience and feel much more confident in our travel abilities. Jenny reports that she is seeing better now. She has some difficulty with focusing, but she is able to read things that she was incapable of reading just weeks before. We have also taken the step towards making communication easier for us. I have introduced ASL signs (not just the alphabet) to make things a little faster. Jenny knows more than I do (I have to look on the interenet and in books) and she often tries to introduce new signs in our communication, and it takes me a while to figure out what she is doing. Of course, she is limited with just the one arm and even that has limited range. Most signs seem to work so far. I wish the deaf community would agree on using the same signs for words. For example, every person I ask how to say “tired” tells me differently (as well as each book I look at). Apparently, Jenny will not be allowed to be tired until we figure it out. A dear friend did tell her how to say “liar”- which is her favorite word to me now. I always thought it was my kids that I needed to worry about picking up new words from their friends. As with the alphabet, we will have to make our own changes to suit or needs. It seems like everyone else does it anyhow, so it works for me.
Jan 27, 2005
Jenny survived her first plane trip this week. We just returned from visiting where our new home will be in Austin. The actual time on the plane was no problem at all. As a matter of fact, I finally realized who they built the plane seats to accomidate. Jenny fit good in them and was well supported, so you can blame her for uncomfortable seating if my theory is correct. The other stuff was not so smooth (cancellations, rerouting, late arrivals, missed planes, blizzard conditions etc…). Several years ago, Jenny had her bags lost and she stated, “To have my bags lost is by biggest fear of anything.” A much wiser Jenny remarked a couple days ago, “After a stroke, most problems that occur seem small and are not worth worrying about.” The real difficult part of traveling was being without her assistive equiptment such as her power chair, accessible van, accomidated bathroom, and so on. She had a rental chair that tilted back and folded up (since her other chairs do not travel well). It turned out that the chair actually made her work so hard to stay up that it wore her out.
We did attend what would be our new ward. As it turns out, a few families (all with kids our kids’ ages) live on our short street, so our kids will know their neighbors better since they will get exposure at school, church, and the neighborhood. Jenny’s favorite part was that since it was a new building, there was a ramp that led to the podium. The members were just as nice as those in Indiana, but the building its self felt more accomidating. Overall, Jenny loves the area and would love to move there! that was a big relief for other family members and myself (mostly since we are starting construction there). The weather was wonderful. Jenny has a difficult time with the cold now, so being that Austin was in the 70’s and Indianapolis was having a blizzard, it proved to be a good place to go.
Jan 17, 2005
We have been highly encouraged with Jenny’s increased strength related to her knee bends that she is able to do while strapped on the tilt table. She has definatley demonstrated the ability in doing significantly more bends each time she does them. Little things like this can still be physically exhausting for the rest of the day. I also see greater shoulder strength while Jenny is laying down, but nothing new in her shoulder while sitting up. Even the physical therapist is surprised that the movements have not carried over.
The extreme cold weather is highly difficult on Jenny. She is really looking forward to her trips to Austin and Orlando in the next few weeks.
January 13, 2005
Jenny has had a “bumpy” few days and continues to be a tough woman. She has had a number of bumps and bruises stemming from various reasons. Her new chair is awesome, but she has got her foot caught under the foot peddle as it was moving, the arms are too narrow and bruise her legs, and she pinched her toes between the table and foot rest when leaning it back. We do have an appointment to fix some of these wheel chair concerns. The worst incident was when she sneezed herself off the toilet and landed on her face. I was nearby, but not close enough. It was a weird experinece to see someone fall slowly like that, but not be able to brace their fall with her hands. It was painful, but Jenny was incredible with handleing the pain. Her face is only a little sore on her cheek, but no bruise. It did cause her to be able to pucker her lips better on command. Discomfort has always helped motivate her intentional movements. She kind of liked being able to move her left leg and foot. Instead of crying, she was laughing and excited as she told me to watch as she made her foot move. She is doing good, but has had more accidents and bruises these past two weeks than in the past 10 months.
January 10, 2005
Jenny continues to do well with driving around the house and using her arm support. We were excited to see her show some strength in her legs by being able to bend (a little) and then strengthen them (a little) while at a 75 degree tilt on the tilt table. It is a good step in the right direction. Jenny feels a mixture of some successes and a large degree of frustrations and losses. I would say that her life is still very much filled with trials and struggles that are difficult each and every day. Our big goal is to get her speech working. There are glimpses of sounds and words all the time, but nothing that is solid and permanent. I would love to hear her voice again and be able to know what she is thinking and in need of without the slow/difficult process of ASL spelling (which is still tons better than the blink spelling).
JENNY LYNN'S NEWS 