Recovery

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.

Nov 11, 2004

Jenny is feeling better from the tube removal. Her stomach was sore for a few days and she even took her first nap in years for a couple hours. She has been working with augmentative communication devices that speak what she types. She is good at it, but she is faster at finger spelling, so she is reluctant to use the speaking machines. Sign language does not require her to carry around a small computer, but finger spelling limits who she an speak to – mostly the kids. She did write several notes to the kids telling them how she felt about them. Plus, Zach has homework assignments where he needs to make words from a group of predetermined letters, so this offered a perfect opportunity for her to help Zach with homework for her first time. Being a past 2nd grade teacher herself, this meant a lot to Jenny to feel useful and to interact with Zach.

Of course, like most of Jenny’s things, everyone else used the communication devices more. We had to do several sentences such as, “Jessie eats worms”, or “Zach kisses girls” to make sure we really figured how to make it worked.

The kids have been really sweet with Jenny lately. They wanted so much to help their mom get better. Even our two-year-old Sophie makes sure to pray every time that, “mom gets better”. I gave therapy assignments to the kids to do specific activities with mom to help with motor skills. They involve puzzles, games, and therapy putty- so the kids are even more excited.

Last night, we had an aid to help out, so Zach became the first child to sleep with mom. Jenny needed this badly. They fell asleep holding hands and giving each other their special “I love you” hand squeezes that they have always had as their special secret way to tell each other that they loved each other. Zach is so sweet to his mom and loves her so much. The other day, Zach pulled out a bunch of his mom’s old sign language books and was diligently studying them. Jenny broke down into tears because she realized how much he wanted to communicated with her.

Nov 5, 2004

Jenny is now finally tube free! Initially, they were going to sedate Jenny and put a scope down her throat to see what type of feeding tube was placed there. Prior to our first attempt on Monday, we had prayed for a successful removal without complications and felt good about it. Since they could not insert an IV, her initial tube removal date was postponed. It was confusing to have felt good about there not being any complications, but then have complications that prevented the removal. However, it appears that things worked out better off. Since they did not want to stick her 100 times looking for an IV, they contacted the hospital who inserted the tube and asked what type it was, so all they had to do at that point was skillfully pull it out in a proceedure that took a couple minutes. It makes a person wonder why they did not make the call to begin with if it could have been this nonevasive to begin with. I now realize that our prayer to avoid complications was most likely answered in the form of eliminating unnecessary proceedures that would have been performed the first time we went in.

Jenny is doing better each day still- just tiny bits at a time though. She is back to her old love of journaling again. She just does it on the computer now. Her entries are short, blunt, and filled with strong emotions. It appears to be really therapeutic for her. Jenny was able to vote this week and do a bunch more things that she has not done in a while. Outpatient therapy is wonderful for her. Her speach therapist is too much like Jenny (even the same anti-bean eating beliefs). Jenny is rapidly making improvments with her tongue, mouth, and voice through newer and inventive therapies. I really can see her speeking some day, even though she has not made any recognizable words or sounds yet.

Jenny is in her new room with her roll-in shower. It is wonderful and there is a bigger bed so I can take over more of the caregiving at night. I was initially worried that taking care of her from 7 am to 11 pm, plus get up every couple hours at night to reposition her would be too much, but as I have taken a few more nights from the night nursing aide, it does not seem to be all that taxing. I still have a nurse who relieves me 1-2 days per week so I can do a few errands or work things. I will most likely still have a nurse come in a couple night just to make sure I sleep enough. My biggest worry is what would happen if I become ill for even a short period. Jenny is still reluctant to have others do much for her besides myself (and the nurse on occassion).

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.

Oct 26, 2004

Jenny finally gets to start outpatient therapy tomarrow! She is excited to see what they can offer. I am in the process of hooking her laptop up to a bigger screen so she can read without problems. I see her play games using a mouse and I do not see why she could not be doing more on a computer.

Sophia has been trying to be a helper in making her mother better. She often covers Jenny in band-aids, moves her arms and leg for “exercise”, and I see her try to feed Jenny every now and then, which I have to be cautious of. Jenny will usually push the buzzer to alarm me. Sophia was able to get a glass of water by me. She held up the capped feeding tube (without a way to funnel the water in) and dumped the glass over the top of the tube. Fortunately, it was bed time and Jenny needed to change into her pajamas. Sophie also accompanied Jenny to the ENT to have an injury on her ear drained. Sophia was shy until she felt she needed to tell the doctor how to do his job. She will be our child who most likely will be a doctor some day.