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.
Recovery
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 3, 2004
We were able to watch our church’s General Conference broadcast from our home this weekend, which was easier since we did not have to leave the house for church. I think it is because of our situation, but it seemes like many of the talks by the church leaders delt with overcoming trials and tribulations. It gave us an opportunity to discuss how Jenny was feeling these days about her struggles. Overall, Jenny felt that the conference talks brought comfort and peace, but she still suffers each day and it is difficult to be patient while healing occurs.
Jenny has become quite strong in using her right hand. I think it is because she signs with it so much and has functional uses for those movements that makes her exercise it throughout the day.
I was able to get out of the house, despite a reluctant wife, for the first time in a great while. I took a short hike with my father which was a needed break. Jenny still struggles to not have me with her at all times. I can easily lift her while providing her the care that she needs. Everyone else needs to use the overhead lift which Jenny finds to be uncomfortable and “humiliating”. I agree that the lift is not the funnest thing, but it is the best we have- and the safest option. While we were gone, I was even more afraid of getting into trouble for being late than I was prior to her stroke. She can not even talk, but I am still afraid of her wrath and getting lectured for wrong doing. Since the hike, Jenny has tightened the leash on letting me go anywhere.
Oct 1, 2004
Jenny seems to have hit a point of slowed progress, but this has happened many times along the way. She is still doing more each day, but not as rapid as the previous month. For instance, Jenny has been able to play games on the computer using a mouse. A few days ago it was highly emotional and unproductive, but she has now become functional, yet slow, at using the mouse. She will win a game of Mahjongg, but it takes an hour rather than a few minutes. Tonight, she was able to point and click her way to read e-mails. Jenny has become more emotional lately but her emotions will still tend to be inconsistant with how she really feels or the situation.
A nice progression has been the increased desire of the the children to want to interact with Jenny. They fight over who sits in her lap or lays down next to her. Sophia thinks Jenny is her own personal play thing. She can be really sweet as she brings over cups of water because she claims Jenny told her she was thirsty. I typically save Jenny before she drowns or gets too wet. I can not save Jenny from getting dressed up in jewelry. All the kids will help do range of motion exercises with thier mom when they see her resting. They usually encourage her and praise her efforts, and are typically gentle. Through the infinate wisdom of children, Jenny gets plastered with band aids because we all were taught as children that band aids fix everything.
Sept 26, 2004
We continue to try new things with Jenny to see what she is capable of. As with every day, life is a struggle and rarely a time without some degree of suffering. We look forward to any success and progress to be hope and joy. Typically, Jenny becomes tearful as she tries new things and they don’t work as well as she she would like. For instance, I had her try to hunt and peck at a key board to see how well she could do. She was able to push keys, but her hand or fingers would accidentally push other keys or functions that would hinder her efforts. Aside from her frustrations, the good news is that she has the rough ability to use a key board!
The other good thing we tried was to have her sit in her wheelchair without any head support. Jenny easily watched television and the only reason I put it on after about 30 minutes was because she needs to be tilted back in her chair every 30 minutes to prevent pressure sores. She indicated that she could have done it continuously for much longer.
Jenny has also been without her catheter for the past week (which Jenny is so pleased that she does not mind me telling). She came home from the hospital with the catheter, trache, and feeding tube. All she has left is the feeding tube, and that is really only there for convenience. If we needed, Jenny could take all fluids, medicines, and foods orally. Since the fluids are given orally by a small dropper right now, she is better off with the tube, but her fluid intake is increasing orally each day. Not having the catheter has presented difficulties with restroom visits. Helping her is not a problem, it is getting my attention that was our first big obstacle. The door bell on her chair seems to help, as well as sign language. The second obstacle is getting she and I into a public restroom together. So, until we figure where all the family restrooms are, and work out a more efficient bathroom routine, we do not stray from home as long.
I wanted to catch the new CSI New York this week, so I watched it after Jenny went to bed. It was about a woman forced into a “locked-in syndrome”, so I am glad Jenny did not watch it. Anyhow, seeing this actor portrayal of a locked-in person reminded me of how much progress Jenny really has made. I could list pages of things Jenny is doing since she was first in the hospital that she is not supposed to be able to do. After seeing her MRI, other than a pure miracle, I do not see how she is able to have the voluntary movement that she has with all her extensive damage. I continue to believe that we have been blessed with so much since her stroke.
JENNY LYNN'S NEWS 