News

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.

Oct 9, 2004

Jenny seems to be telling me that she has had many more more good days lately. We are trying to get out more and she still is getting stronger. She played Yatzee Jr with Zach again and I was amazed at how much better she was able to pick things up. We still work on getting her to lift her arm up to her head. If she has an itch, it seems to get there with some effort. Otherwise, she still needs help when doing exercises. I still give her snacks like soft candies and popcorn, which seem to motivate her to want to lift her arm. I only need to give a little help for these exercises. It seems to be helping her with her chewing as well.

We started an addition on our house shortly after Jenny came home and it seem likeit might be done soon. It took forever, but Jenny will now have a real room and a roll-in shower. I will not have to carry her upstairs for a shower any more. We think that by the end of next week it will be done (much later than it was suppose to be).