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.

Oct 24, 2004

I realized that I have not written in a while. Much of the reason is that Jenny has reached another plateau where she has not developed any noticable new things. I have no doubt that this is temporary. Her therapies have been less aggressive lately due to her increased mobility and being away from the house where we can do therapy. Home-based therapies have stopped and we are still waiting to get a therapy time for outpatient therapy. Jenny clearly does fewer hours of therapy each day, so it is not a surprise that she does not see any new big things.

I did get a video game joy stick so she can practice for once she gets a power chair. She does great while playing Ms Pacman. The kids have become awfully interested in her therapies since the video game came into the house. Zach is very willing to help out with this new exercise. He does a lot of demonstrations for her.

Jenny has burst into tears a lot more frequently. It is usually unrelated to any event, other than if she is allowed to have too much time to think. We have had a lot of visitors lately, which cures the “too much time to think” problem. I think Jenny does well, but she is entitled to tears when she has them. I struggle more with her sadness than she does. It is difficult to see someone sad and not do much. Being a guy, I want to fix her sadness in order to feel like I am helpful. Jenny has to remind me that just being there is all she needs from me.

Oct 18, 2004

I took Jenny for an outpatient therapy evaluation today. My most repeted statements today were, “this movement that she is doing is new”, “she could not do any of these things during inpatient therapy”, and “please be patient with Jenny because she is always emotional at first.” All the therapists seemed to have lots that they wanted to do with her, except the speech therapist. We have only had one speech therapist in the past who appeared remotely optomisitc- and it happened to be the one that Jenny made the most improvements with. Respiratory, ENT, and speech people have been our biggest “Negative Nellies”. Jenny is in a trial period where she is taking all food and liquids orally to see if she can get rid of the final tube inserted into her body. She is doing super, but I can see all the respiratory, ENT, and speech people squirming because “a person with a brainstem stroke is not able to swallow or protect the airway.” However, Jenny has the nerve to go against their restrictions and do it anyway. Jenny’s biggest barrier has not been her health, but her diagnosis. Yes, she is very limited, but not as limited as some professionals try to mold her to be.

Oct 12, 2004

For the past several years, our family has enjoyed the tradition of having weekly family nights. Once a month, we have a night where all we do is take turns sharing our feelings for each other, the gospel, and what ever else that person would like to share. For those familiar, it is like a testimony meeting at church, but much more intimate. The past several months have come with a void in which Jenny has not been able to be involved by sharing her thoughts during this favorite family activity- until now. Last night, Jenny was able to use her ever improving ability to finger spell her thoughts and feelings. We really miss hearing her voice, so it was wonderful to experince the miracle of her communicating her thoughts to us this way.

Jenny has told me on several occassions lately that she tries and tries, but her left side does not respond anymore. It has been 2-3 months since her voluntary movement on her left slowly went away. It was her stronger side and had more voluntary gross motor movements initially. She refuses to give up. We went through our closet this week, as a yearly tradition dictates. I was impressed that she finally got rid of some of her 80’s clothes from high school. When it came to her high heels, I asked if I could get rid of them. Jenny refuses to believe that she will not walk in them again some day. So, we kept them. Because it is Jenny, she probably will.