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.

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.