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.
News
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.
red popsicles
I left the hospital to spend time with our girls today and came back to see red pigment on Jenny’s bandages by her trache. I feared some sort of bleeding, but Missy told me that Jenny had a popsicle today! Jenny was soooo happy about it that she had a huge grin. Missy tells me that Jenny was not able to open her mouth without assistance on the first 2 bites, but did not require help for the rest. The true test was to see if any red popsicle fluid came up with suctioning of her airway- which there was NONE all day! She is swallowing and doing quite well at it. They plan on starting ice and water where they use blue water to see if any comes up with the suctioning. If the blue water test works out, that is a step closer to possible elimination of the tracheostomy, begining some eating, and possible speech-but we will take it a step at a time.
On Thursday, we meet with the assistive technology people for use of communication devices and wheel chairs. That means we are getting that much closer to Jenny coming home! She still feels a lot of discomfort, but her pneumonia looks like it cleared and the fever is down. Zach read to his mom today for school homework. He was cute as he asked Jenny questions and showed pages and told her to blink if she thought certain things. Jenny had a smile on her face and a laugh every now and then as he did this. This was a good day.
April 12, 2004
Jenny spent much of Monday sleeping. She sat up for an hour, but was mostly asleep. She appears to be in less discomfort and breathing better. She has not been communicating much these past 2-3 days, but became more alert in the evening. Before leaving for the night, she kept saying her body was not comfortable and needed repositioning (she spelled repositioning). After a while, I think she was telling me this just to keep me there longer. The kids do not know how to communicate with Jenny yet, but Jessie likes to say she does. Jessie will ask her mom, “mom, can I have a treat?” After which, Jessie tells us, “mom said I could because I saw her blink.” She will ask for treats for her siblings too, but mom appearantly tells Jessie to tell them, “No!” I figured Jessie would be the first to work the system on this one.
Easter Sunday
Easter day was good and bad. The kids came to the hospital dressed in Easter dress which Jenny picked out, in part, after her stroke. Jenny appeared to be feeling better. Jenny’s brother (Steve) hooked up the hospital tv so it can play video recorded on the camcorder. In using this same concept, it displays what is being taped if the camcorder is hooked up while taping. Since Jenny lacks the ability to move her head or horizontal eyes gaze, the camcorder moved around for her as the kids excitedly opened easter baskets. Jenny could see all the action by just watching the TV screen. The kids were less anxious around her and even Jessie crawled in bed next to her until we left. Jenny was able to laugh, which the kids and my mom saw this for the first time.
As for the bad (which better put would be “difficult”), it was related to the emotional roller coaster of seeing friends at church for the first time since the stroke. I was touched by the concern and support. We are fortunate to have a rehab doc and neurosurgeon in our congregation who were asked to explain Jenny’s situation during the last part of our meetings. It was nice to not have to personally answer these questions many different times, but I am glad people have a greater understanding of what happened. My desire is that people relaize she is still the woman she was a month ago, just unable to move her body. Jenny was released from her primary music calling, which was expected, but hard. Jenny was relieved by knowing that the new chorister is talented and will do an excellent job. Knowing this helped her accept it much better. She still appears to be in constant discomfort, which affects me most of all. I hate seeing her hurt and not knowing exactly what to do to make it better. I am getting more efficient at guessing. In just 5-6 questions I found out that her ear was folded over and that was causing pain as she lay on it. Give me a couple months and I will rock at “20 questions”.
JENNY LYNN'S NEWS 