Family

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.

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”.

April 9-10

Jenny had a much better day on Friday. Zach was able to see her sitting up in a special wheel chair/bed, which made her look more like herself. She made some great movements in her left arm and was laughing tons.
Saturday was difficult because she could never get into a comfortable position (which may be relative in her situation) and she was dealing with infections, bacterias, congestion, cramping, and fever. I brought in a video of Zach’s first soccer game (in which he scored a goal), but Jenny made us aware that seeing has been difficult and she was unable to really see well – even with glasses. I was told by doctors that double vision is common, but may only be temporary. It is frustrating to not know what to do to make her feel better. For now, I suction her mouth, reposition her, ask if she needs the nurse, do range of motion, try to play music of her choice, and just be there and talk with her. It really does not seem to help much, but I guess it might be worse without it.

Last summer, Jenny joined her mother on a trip to London to she Melissa (Jenny’s sister) perform in a show. Jenny was reluctant at first because it was too close to other big trips, but I am glad she went. She made audio tapes for the kids where she told them she loved and missed them and then read them a story. I found the books and tapes (4 in all) and let the kids listen ot the 1st. It was “What Mommie Do Best/ What Daddies Do Best”. It seemed to help the kids, but It was difficult for me to hear- even thought I was longing to hear her voice. At the end of the story, Jenny reassured them that while she was not able to be with them that Daddy was going to take care of them for her until she gets back.

visits with the girls

Today was a great day for Jenny and our little girls. Hospital visits are so hard for our childen, especially since it is hard for them to carry on a one-way conversation with mom. They are so excited to visit mom up until they see her motionless and expressionless in her bed. At that point, they get a little anxious and quiet. Today, they got to go see Jenny in a more upright position and go outside in a beautiful garden area with their mom. There had a pond with fish and turtles which made the kids run around all crazy and come to Jenny in excitement while they told of the turtles. For a second, it seemed like they forgot about mom being at a hospital. Jenny needed this experience with the kids today, plus it was the first time being outside her room (except for medical transport- but that was not too fun).

Jenny also got her hair washed for the first time since her stroke. She loved every minute of it. She has been bothered by her hair, but she seemed more satisfied today. She indicated that she wanted her legs shaved, but changed her mind after I took one pass at her with a razor. I did not cut her, but I’m sure I did something wrong. Jenny seems to be experiencing more pain in various parts of her body. It is hard to not be able to do much about it. We massage, try to reposition her, and make sure she gets medications when needed, but I doubt she can ever get any too comfortable. It hurts me to see distress on her face. I try to run through a list of things that have bothered her in the past, which usually works, but sometimes fail to figure out what she needs. I feel the need to apoligize all the time for not knowing what to do for her- and for never being able to put her glasses on her without accidentally catching the nose pieces on her nostrils. I am not the only one who has that problem, so I don’t feel too bad about the glasses part.