Family

dec 14, 2004

Missy and Dustin are visiting, which is always a good thing for Jenny- and the family. Since they were here for so many months just after the stroke, it has been a great baseline to judge her progress over the past 3 months. I had forgot what Jenny had been doing when they were here last, so it was fun to see how excited Missy would get to see some large improvement. Jenny felt a little proud of herself as well.

We are still waiting for some medical equiptment (such as the power wheel chair), which will make huge changes in Jenny’s life. Hopefully, it will be a nice Christmas surprise to get these things by then. Jenny has become much stronger in her right arm and it continues to improve daily.

Dec 1, 2004

We began our Christmas decorating this week in keeping with family tradition. Unfortunately, it has been very emotional as Jenny begins the Christmas holiday knowing that she is not able to participate fully as she would like to. There is no doubt in anyone’s mind that Jenny plays an active role as wife and mother (we just need to get Jenny to realize this). To a degree I think she does. There are just many reminders of what she can not do.

As for what she can do, the list grows each and every day. She has enjoyed doing electric stimulation. As for what changes it may provide- we do not know. It appears that her left leg has more movement than we once thought, which is a promising thought.

Nov 27, 2004

We had an enjoyable week as many family came for Thanksgiving. It is always great for Jenny when family and friends visit. She tries harder during therapy and I think she likes to show off for those who have not seen her in a while (even though she would tell them that she has not gotten any better). It allows me to rest a bit to have people visiting that Jenny likes to be with. It is difficult to let Jenny sit alone, with loneliness and sadness on her face, while I try to do things around the house. Unfortunately, I am the one who likes to watch tv, not Jenny. I think that once her power chair gets here, things will improve greatly and she will not have to rely on me as much.

Jenny likes to get out more these days. Her improvements are not just physical, but emotional too. I remember when she did not want to go out into public because she did not want people to stare at her. During the holiday season, it is more difficult to negotiate the stores/restraunts/malls and find parking spaces that allow room for wheel chairs to exit.

Jenny is still making small steps in the right direction and what I notice lately is that her core strength is what is improving the most. She and her speech therapist are making gradual improvments as well.

Nov 22, 2004

Jenny has demonstrated more improvments with producing voluntary sounds. She also is getting better at using a key board. She reads e-mail (if it is in a font large enough to see), but has only writen a couple. She wrote an e-mail to her mom two days ago that took 2 hours. It was less than a typical paragraph, but difficult as could be. She cried and wailed out of frustration but refused to quit until she was done. I have decided that we have not done as much as we use to do, so Jenny is aware that things will be stepping up. She agrees that she has not improved as much since we have been getting out more, and therfore not been home to do vigorous therapy. I am trying to include movement/therapy in all activites of her day.

Right now, Jenny is sitting next to me and working on her augmentative “speaking keyboard”. She did not know what to say, so I told her to write all the things she wanted to tell me, but never was able to. That was a huge mistake on my part. I realized I opened the flood gate of complaints that no man should ever open for his wife. “The tilt table is boring.” “The kids watch too much tv.” “I hate the therapy ball because it makes me drool and the spit gets on my hand.” It goes on from here for quite a while. She gets a kick out of watching me cringe as she hits the “SPEAK” button, and then laughs as I muster the strength to say, “good job Honey, keep typing.”

We did have another tube party to celebrate getting her last tube out. Like the trache party (where everyone had to wear a trache except Jenny) everyone had to wear tubes, except Jenny. It was a huge morale booster. She has been feeling like a burden to the family and a failure as a mom. After the party, she has been more positive about her contributions. She wants to be active in discipline, affection, and day-to-day raising of the kids. Little does she know (or want to realize), but she plays a huge role. The kids fight to see who sits next to her at dinner. We now have a schedule. Anytime she is on the ground doing therapy, she is attacked by a kid with love and hugs. If the kids are misbehaving, one ring of her bell can bring the kids to a stop more than what I do. They start defending or bring there conflcits to her right away, before and/or after she stops them with the magic bell. Even though I am a child therapist- she has taught and reinforced to me that parents over lecture their kids and there is sometimes power in her silence that allows the kids to work out their own problems (with occassional redirects by the bell). If she is not actively participating in the role of a mom, than I don’t know who is. Because of the great mom that she has always been, she does not feel like she does enough- but she never thought she ever did enough.

Nov 17, 2004

There have been several big events these past few days. Jenny was evaluated for a power wheel chair (which is something she has been waiting for). She was perfect at it. All that Ms PacMan really paid off for Jenny. The chair has features that allow for new freedoms. Jenny is able to tilt herself back (to relieve pressure when needed), the chair is faster than Jessie’s bike, It can elevate up and down, and it will raise and lower her legs. Most of all, I will not leave her in a room to watch the kids play and then come in later to have her left watching a pile of toys that were left by the kids who went elsewhere.

We also went to the Louisville LDS temple last weekend with the ward. It was Jenny’s first time back since just a couple days prior to her stroke, 8 months ago. It was a bit scary for her since we did not know how she would do on a long trip, at a hotel, or at the temple. The hotel and ride were easy as pie. The temple experience was wonderful, due in part to all the supportive ward members who made it possible. Jenny told me she felt a sense of peace that she has not had in a long while and that it was a needed experience. These are just more things that we have experienced and conquered. Our next big challenge is flying, but I think we will do fine with a bit of planning.

Outpatient therapy is working well. Jenny responds best to speech therapy so far. Her therapist has been on vacation this week and Jenny has actually digressed. I was stumped as to why, since the therapy they were doing was essentially the same. It dawned upon me that the only difference was that the usualy therapist and Jenny spend half the time laughing, which activates the vocal chords and allows the therapy to work better.

Occupational therapy is Jenny’s worst therapy. A quarter of the time it is really helpful, but the rest is a waste of time or frustrating to her since they want her to do things that she does not agree with (I am on Jenny’s side most of the time). As for Physical therapy, Jenny takes on a good amount of pain and works hard at everything they tell her to do.