Author: jenannlynn

In March 2004, I suffered a severe brainstem stroke, & was "locked in" for several months". I have been married to a wonderful man, Mark ever since 1994, & we have 3 kids: Zach, Jessie, & Sophie. I have been blessed in so many ways by God, so I wanted to keep a blog to share my recovery, life, & answer questions.

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.

April 14 (a very good day)

They say that the next couple months are big for Jenny’s improvments. She does more and more each day. Her tiny movements are such big deal to us because each and every increase is one more thing she can do that she was not suppose to do. There are still frustrations. Her eyes are a problem because she still has double vision and her glasses do not work very well in bed. She was examined by an eye doctor today who gave very little that we could do to help, except patching an eye to stop the double vision. He also discouraged the use of contact lenses for fear of infection and other eye problems right now. But this was still our best day yet.

I was able to be there duing her speech therapy. She ate another popsicle (a few bites). This time, she opened and closed her mouth on her own and had good swallowing. She was also given water and apple sauce, which she did okay with. All of the these went down the right pipe with no problems. Jenny also gets to were a speaking valve on her trache (it lets air in the trache but directs it through the vocal cords on the way out the mouth and nose) most of the day. It was so great to hear her finally! She has made no noise for 4 weeks now and I did not realize how much I missed it. Most of the sounds are moans and slight word sounds. She does have her beautiful laugh back. In the past month, cries and laughs were silent. She moves her mouth and tongue slightly as she tries to sound out words. I can’t describe the feeling of hearing and seeing this. They took the valve off for a nap and we put it back on in the evening for Zach to hear her make sounds. We practiced words for fun and she was actually making sounds where you could almost recognize the word. Her ability to make sounds increased greatly in just those few hours. I kept working with her to say, “Hi” to Zach when he came to visit. He came in, Jenny said the word, and Zach knew what she said! Jenny was also able to make voluntary movements with her arms and right leg during occupational therapy. She was able to do them for me as well. The therapists are almost in tears each time she does a little move for them. I am in tears every time.