News

Jenny moved hospitals

It has been a larger than normal break between updates. Jenny has had some difficult nights that lead into difficult and emotional days where rehab is hindered by her anxiety and sadness. Regardless of the reason, she will tense up and be impossible to move if something is troubling her. Jenny indicated to her sister that her needs were not being taken care of at night, so I have stayed at the hospital with her the past two nights. The first night was a nightmare. I feel bad it took me this long to stay up with her. She was not cared for very well by the night nurse, who was from a nursing temp agency. I also realized that she was waking up at 4 or 5 am each day, so by the time I got there after getting Zach off to school, she had spent too long alone. She is blind without her glasses, but only one or two nurses have ever put them on for her. That leaves her with only her hearing. Most people are unable to really know what she wants or understand her blinks.

Jenny has had some great things since I have helped ease her stress by being there 24/7. She has eaten a whole range of puree foods. Puree chicken is her least favorite, but I commned her willingness to try it. She liked Mashed potatoes until she ate them for 6 meals in a row. She liked pudding and puree fruit but her favorite was some chocolate that smuggled in after getting peer pressure to try it by her friends. Shr rocks at swallowing and she is getting better at moving food from the front to the back of her mouth. Her mouth opens wide and she has so much more muscle tone and expression in her face. Her right leg can almost lift straight out and her left arm is getting to be stronger. Her neck has been a difficult issue. Her neck is pulling her head to the left and she spends so much time that way that she is getting pressure sores. We have to hold her head for up to 1-2 hours to give her relief sometimes. It is a true fight to do so, but she keeps indicating that she wants us to keep doing it. Jenny is at a new hospital in Indy. We are at Community Hospital East. I need to hurry back so I will write more later.

April 23, 2004

Jenny has had difficult evenings for the past 2-3 nights to where her pulse and oxygen saturation levels are of concern, but she is relatively stable. They have her on monitors, but they feel that most of it is due to anxiety related to breathing problems. A humidifier, of sorts, has seemed to help this problem. Jenny has eaten a few soft/puree foods that include mash potatoes, yogurt, and pudding. Once the food gets moved to the back of her mouth, she swallows with no problem. I was told to let her practice chewing by biting on a piece of Twisler candy. She accidentally bit a small piece off and when I told her to open so I could get it, she closed tight, smiled big and swallowed it. She did not choke, so I felt better.

She still is frustrated and has difficulties trying to communicate. Her communication device is too sensative for her because the sensor has to be just so. Her head also moves to the left and she struggles to watch a screen since she only has verticle eye movement. When her body is not stiffening, she has been able to move most parts of her body to small degrees. I find that she is still quite exhausted from sitting in a wheel chair and these types of exercises, but I assume that is normal.

BARIUM ICE CREAM

Jenny had a swallow test done today to see if she was able to keep food/liquids going down the right pipe when she swallows. I was able to be there and see her swallow barium laced ice cream during her x-ray. She had no problems and they were pleased with her ability to swallow. By the way, she has a really cute skull and nice pointy jaw bone. Her speech therapist said that a week ago that she would not have thought Jenny could have done what she did today. So, Jenny gets more variety in her diet as long as it is pureed. She will start out tomorrow with fruit and maybe mashed potatoes. She will most likely have just a few spoonfuls total, but each one is going to be heaven to her. She lets us know that she misses eating foods.

I started playing Master Mind with her, and she is doing great so far. The nurses insist that I will cheat if they don’t monitor my play. They know me better than I thought. Jenny still struggles with vision and feeling uncomfortable/pain. I don’t know if I ever really get her to a point of feeling totally comfortable. I did get the okay to use high top shoes rather than these really massive boots/braces that help preserve her feet from pointing permanently. Jenny hates the boots more than anything else. I think they work better anyhow.

April 19, 2004

Jenny has been pretty stiff due to feeling uncomfortable, scared, and in pain. She struggled with physical and occupational therapy because she could not relax her muscles. She was evaluated by a neurologist this afternoon, who was very positive about Jenny being able to regain some muscle control, which would be the first neurologist who has acted like there was much hope. He suggested that we increase the amount of therapy and range of motion because of her positive muscle movements. After this, Jenny has been more compliant and relaxed. I think she hears too often what she can not do and not what she is capable of doing. Perhaps this optomisitc visit by her doctor was what she needed.
It was asked that we list our address:

12729 Geist Cove Dr
Indianapolis, IN 46236

Jenny likes cards and pictures.

April 17, 2004

Jenny seemed to be in distress and in much pain for much of the day. This is difficult for us all because we feel so helpless and we hate to see her in pain. When she is uncomfortable, she tenses her body and it makes doing range of motion exercises difficult. We tried most everything to get her feeling better, but she only seemed to become completely at ease when a couple friends (one of which has been her stylist for years) came to give her a hair cut. Jenny closed her eyes and appeared to relax and the pain seemed to be erased from her face.