Recovery

Sept 4, 2004

Jenny has had a bitter sweet past couple of days. There were a bunch of great things that have happened. My father finally came out to stay with us for a while. His goals, aside from helping with Jenny, were to teach the kids to ride bikes without training wheels. That took about 10 minutes before they were both darting around like they had been riding this way all summer. It took another 10 minutes before Jessie was stunt riding and trying tricks. Zach started piano lessons and was able to learn his first little song that he played for Jenny and I. These were the good parts that Jenny admitted were things she felt that made all the things she went through well worth it.

The bitter part was when the kids would crash in front of her and she could not do a thing even though they lay hurt just a few feet away. She so much wanted to let Zach know how proud she was about his piano and to give him a long hug and kiss. Even though I was quick to tell the kids that mom was so proud of them, she indicated it was not the same as holding them in her arms and her own voice telling them what she felt. Sophia was choking yesterday and later wanted to be held and comforted, and it was the same type of result. Sophie was asked if she wanted to sit in mom’s lap (Jenny was crying because she so wanted to comfort Sophie), but Sophie refused- which happens occasionally. I finally convinced Sophie, but it is just another example of the many heart breaks Jenny experiences on a daily basis.

As for Jenny’s health, she is getting much stronger. She sits longer and with less pain when on the floor. We do more standing exercises where I help support her or she stands on a tilt table. I sat Jenny in front of the piano. I could see her right hand trying so hard to push with enough force to make sounds. The keys moved, but not with enough behind it to strike the chords. She wanted to sit longer and try more. I was so proud of her and her increased desire lately. I think she hides it if things hurt during exercises. I keep asking and she tells me that she is fine. Hopefully, she really is doing well enough that these exercises do not hurt.

Sept 1, 2004

The past few days have been wonderful as Jenny and I have had more time alone and with the kids. I am impressed that she has been able to support herself in a sitting position (legs crossed and arms supporting her upper body) while on the floor. Like many other things, she could not do it this well just a short while ago. Jenny has enjoyed being able to go to the back to school nights for Zach and Jessie, but it is with mixed emotions. She has always enjoyed being a parent volunteer at school (when not a teacher herself) and it is hard to not be as involved as she would like to be. She also struggles with the fact that she has little control of her emotions, so she will either laugh or cry without the ability to control it. I know she is self conscious about it and I will see her laugh at something (that most people would chuckle about in their head) and then she will turn to tears because she knows it is not a situationally appropriate emotion.

We had a visit by my Aunt Janice and Uncle Ron, from Utah. It was great to see them and these visits are always a positive thing for Jenny’s morale. Anyhow, I guess the kids have been surrounded with so many relatives in the past few months that are new to them, or have not seen in a while that they simply just catigorize them in three groups. Children are in the cousin group. Adults in our age range are aunts and uncles, and those who are my parents age are grandparents. Ron and Janice were called grandma and grampa. Every now and then, children of our friends from out of town end up being lumped into the cousin category as well. Either way, the kids love their big family.

For the first time, Jenny may have had a good day that she admitted to. Usually, I need to be careful how I ask her things. If I ask if she feels good today, she will reply, “No”. If I ask if she is having a normal day she will usually say yes. I am not sure what a good day would be defined as, but I think it would involve speech and more voluntary movement. As for her good day, she spelled out, “Thanks for today” which the day was a good day. We had a great family night activity playing our favorite “bowling” game and Jenny ate a bunch of good foods like pizza, root beer and brownies. Obvioulsy, the food was cut small for her, but it tasted good. I also did not make her work too hard in therapies, and she had new movements in her left leg. We snuggled on the couch for a while and just enjoyed being together as a family. I’ll take “thanks for today” as a good sign.

Aug 29, 2004

Sunday is a favorite day for Jenny since I do not make her do much when it comes to therapies. I did give her the assignment to wave to anyone who said hello to her at church- which she did. Her waves started out pretty good with her lifting her forearm and do the “elbow-elbow, wrist-wrist” move. It was slow, and a bit delayed, but beautiful none the less. She has really started working the larger muscle movements on her own. I often see her doing repetative movements as she is in her chair or in bed. Jenny has been a bit more depressed this past week, but I have also seen her work harder than ever before.

Aug 27, 2004

The focus of Jenny’s therapies have been to incorporate daily living skill movements in her therapies. She has a number of strong movements, but still not yet able to do self help skills. However, Jenny is so very close to being able to do many of these things. I have been somewhat disaapointed by a lack of significant progress these past couple of weeks. I suppose so many changes occured at once that the lack of huge change (such as trache removal) makes it seem like there has been little or no change. Upon closer look at Jenny’s progress, she has had great increase in her core strength. Once realizing this, we worked with the therapists and tried more aggressive therapies. We had tried many of these therapies before with great pain to Jenny or lack of strength to do them. This go around Jenny was able to easily do these exercises that she could not do just a month ago.

Eating is better and Jenny takes in 2 of her three meals a day orally. She could eat a third meal, but we tend to give her a liquid diet through her G-tube to make sure she ges enough nutrients and liquids. She is taking water much better orally, but it is a slow process. Jenny is also sitting in her wheel chair less each day. She is sitting on high back chairs, the couch, rockers etc… more and she still requests that she sit up in the front van by me- which is more than fine if you ask me. We do more standing exercises too, but the overall thing is that she still needs support to do these things at this time. Speech is a big concern of ours since that is what Jenny wants the most. We will try speech therapy again and see what happens. Finally, Jenny was lowered in her meds again and she is doing quite well. She is always so happy to see another med dose go away.

Aug 21, 2004

Jenny’s progress keeps improving, but she has a few set backs every now and then. Earlier in the week, Jenny was suffering from horrible pelvic contractions/spasms that turned out to be related to a blocked catheter. Once the problem was discovered, she went back to normal. It brought back the memories of her earlier times at the hospital and it was difficult to see because there is so little I can do to help with this pain. Jenny has been able to interact with family by way of video over the internet. Previously, we put the phone to her ear and someone had to listen and tell the speaker when Jenny blinked “yes” and “no”. Now, Jenny can nod to to answer questions and has more of a feeling of independence. Plus, she is able to see people like her new nephew in something other than a still picture. Technology sure has made life more enjoyable for her and I imagine than 5-10 years ago that many things she is able to do would not have been available- which gives hope for what will come in the next 5-10 years.