Recovery

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.

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.

1 month

Today marks one month since Jenny’s stroke. March 16th was actually 8 years to the day from when we moved to Indiana. I feel like the last month has been a blur. I can’t imagine what Jenny feels. She continued practising with her communication device today now that she has dedicated glasses to mount her motion detector to. She appears to be doing better with the system and I made some changes to the format to better suit her needs. I added some fun phrases as well.

I began her candy therapy today. The speech therapist said I could help stimulate mouth movements by using Pixy Stix and Dum Dums in small/controlled quantities. Jenny appeared to like it.

She dislikes the boots she wears that keep her feet from pointing. She hates the suctioning of her trache that makes her appear to convulse. It must get bad because she will ask to be suctioned.

I would have to say that Jenny is doing better than expected for just being one month. I credit the prayers in her behalf and her strong will. Thank you all for your love and prayers.

Assistive Technology

Jenny was introduced to a communication device that allows a motion sensor to detect blinks in which she can select from a pick list of letters, words, or phrases that are arranged in catagories. A small sensor is mounted to her glasses and picks up blinks. There are some drawbacks. Any blink is registered and her double vision requires her to use an audio list that reads the choices. Once picked, the computer voice says the selected word(s). She was not resistive, but was emotional when it actually came to relying on other ways to communicate aside from her voice. She is getting better at making noises and her tiny muscle movements (which are relatively huge for her condition) are increasing, but ever so slowly. I fear that I write of the positive things to the exclusion of the trials and hardships. Each day she suffers from discomfort, pain, emotional concerns, and general fear. Her life is so scary and she often becomes emotional when I have to leave. Missy tells me she cries when I go and I hate to leave, but I am torn between caring for Jenny and the needs of our kids. Jenny realizes this, so she will tell me to be with the kids, but she is still sad. We celebrate Jenny’s successes and try to ease her daily struggles as much as we can. Thank you for all your prayers.