A number of people have asked if Jenny saw the most recent “ER” episode last night about a woman who had a stroke and was ‘locked-in” briefly due to the stroke. Jenny did see the episode because she saw the previews for it. She use to love ER, but finds it too hard to watch, but wanted to see how they portrayed it. If you watched it without sound, it was pretty accurate. Jenny stated that the woman’s thoughts were “lame” and “written by someone who had never had a stroke”. Of course, there was a tv ending where the woman almost fully and immediately recovered even though she had a totally blocked artery for several hours (it only takes minutes to cause permanent damage). A few scenes were too real (the woman was a mother of three in her 30’s). Jenny reassured me that that at no time did she ever think that her emergency room doctors were “hot”, like the tv show lady was thinking.
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Feb 9, 2005
We returned from a 5-day vacation to Disney World last night. We went with Jenny’s brother (Steve) and his family and had one of the best times of our lives. Steve and Ellyn had planned it so Jenny was able to do all of the activities and basically feel that there were no barriers for her to truely have a good time. They had occomplished this task perfectly. Aside from the normal Disney excitement/activities, so many wonderful things occured while on our trip.
Despite Jenny’s previous worries, she was able to ride rides, find an accessible bathroom, and enjoy living life. She stated that this was the first time she had been truley happy all day since her stroke. I knew this because for 5 whole days she did not cry once (except happy cries), whereas she typically cries at least once daily due to pain, suffering, and general depression.
After our maiden voyage to Austin to figure out air travel, it seem like we were able to smoothly conquer our hurdles of the previous trip. Also, Jenny was able to actually utilize the accessible elliments in a hotel room. Not only that, Jenny was able to drink water for the first time without gagging or coughing at any degree. She typically coughs at least a little at first, but generally does fine when drinking the bulk of her liquids. We did an improvisation of standing since her tilt table was back in Indy. I supported Jenny against a wall and let her do weight bareing exercises that way. In the process of doing standing therapy, we learned that Jenny could stand against the wall without any support or assistance for short periods of time (I did not dare let go of her for more than 10 or so seconds), but she could have gone longer. This was the first time that Jenny has been able to sleep without the assistance of medication (and I think that it will continue). Sophia even surprised us by showing excellent toileting skills there- which have continued since coming home.
We loved spending this time with Steve’s family and our kids had a ball with their cousins. Jenny loved the weather and just seemed to do better physically and emotionally. Right now, she is on the tilt table-wishing that she was back in Florida. It will be nice once we move closer to more of her family and live in a warmer climent. It was nice to just leave our worries behind and enjoy being with the kids and not worrying about insurance, therapies, dr appointments etc…
Jan 31, 2005
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.