Jenny has been a bit discouraged lately reguarding her progress. Appearantly, Jenny set a goal early on to be totally healed by Zach’s birthday (which is next week). I guess a 4 month total regaining of all abilities may have been too aggressive, but I respect her desire and faith. Of course, she has far surpassed all that she was expected to do and has the ability to go much farther. Jenny also stated that she has done all that she was suppose to do, but she did not get any better. In turn, I asked if she wanted to review some video I have been taking of her progress since she returned from Cleveland. After seeing this, Jenny changed her mind concerning her lack of progression. She still works hard and is slowly getting stronger. This was kind of a tearful day, but a good day none the less.
Church
June 21, 2004
We just finished a therpay visit and I am still amazed with Jenny’s progress. It seems like every movement is buidling upon the next and they are getting more defined and controlled. At the suggestion of some friends, I began working the ASL alphabet into Jenny’s range of motion. Her fingers have become more flexible and just today, she demonstrated huge movements in both hands and sets of fingers for the first time. I will be proficient at the ASL alphabet, but unfortunately, only if I am able to use someone else’s hand to sign with. Jenny was given the assignment to do 100 toe lifts each day. The next morning she did 200 right off the bat. I see her moving and practicing all the time. The only real area where there is no advancement has been in speech. It almost seems as she has digressed even though her swallowing, tongue/mouth movements, and breathing have improved.
Jenny went to another church service yesterday and it was much easier on her. The primary children sang for Father’s Day and Jenny handled it much better than I thought. Jenny looks better and asks to get out of bed more often. She does report constant pain or discomfort with various parts of her body, so I want to be clear that this is still a very difficult process- even though she has made great strides in the use of her body.
June 13, 2004
Yet another mile stone has been met as Jenny attended her first day back at church. I did not realize how difficult it would be to get Jenny ready for church compared to any other day. First of all, there is this skirt and panty hose issue. I almost put a pair of Jessica’s tights on Jenny that were somehow placed in Jenny’s dresser by mistake. The real stockings did not seem much bigger, but I was aware of the “dance” and stretching that is involved with putting these things on. Despite my deficits, Jenny still looked beautiful by the time we were done. She and I only attended the first of the three hours of meetings. I knew it would be overwhelming to be back to a place she has found such support and strength by means of friends and gospel message. I appoligize to those who hoped to speak with her since we left early. Jenny was emotional the whole time and struggled to compose herself. I helped her take the sacrament, which is something she looked forward to doing despite having it brought to her in the hospital on occassion. She also loved to hear the choir, despite her tears and emotions. She looks forward to returning next week.
Jenny has demonstrated more movement in her body. I noticed that her toes were moving in a rythmic, fluid motion as if she was tapping to a beat. When asked to stop, she stopped, and would continue when asked to do so. Her right hand has also began to move all its fingers and bend at the wrist when Jenny is asked to move it. She has not been able to repeat these movements that all appeared last evening, but I assume it is normal to have the ability to come and go. I can get movement in her left hand too, with a new therapy that I invented called, “booger therapy”. It is simple and plays on Jenny’s dislike of other people’s snot. I simply hold her hand out and slowly move my nose close to her hand and she either bends the threatened finger out of the way or the whole hand. I guess this could be a reflexive movement, but at no time do I touch her fingers (even though I tease her that I will put her finger in my nose). She usually laughs and enjoys seeing movement as much as I do. Jenny also is able to make movements, upon request, better when she laughs. I’m not sure how that works, but I tell Jenny that she will take her first steps at a comedy club if this is the case.
May 10, 2004
Jenny has been eating anything and everything that we can bring her. She ventured to try food from her puree tray on Sunday after I tried it first and gave the okay. Oddly, the item she ate was chicken noodle soup, but it was the only thing not watery or runny, whereas the meat, vegatable, bread and cookies were all a liquid consistancy. Go figure.
We have family home evening at the hospital tonight and we sang a primary song in rounds for an opening song. The girls sang the first verse, which put Jenny into tears because it was so beautiful. Zach and I sang the second verse which also brought her to tears, but only because she laughed at our singing. We had cotton candy for our treat. Cotton candy has to be the best treat for her so far. It just melts in her mouth.
May 4, 2004
Today was a great day. I always try to see what Jenny can do or if she is able ot move on with therapies. I convinced the staff to let Jenny go without an oxygen tank for therapies since she is only on oxygen for moisture. Jenny had no problems and her saturation levels were normal for the several hours she was off the oxygen. So, they decided use room humidifiers instead of oxygen. Her secretions are less each day and she is so ready to get rid of the trache. Her eating was great today and her mouth opened so wide and she was able to move food from front to back well. I also realized that Jenny, being a singer, had not tried singing with her speaking valve. She tried it and sang a song for us to guess. Obviously, she is still making basic sounds, but her friend guessed correctly “I Am a Child of God”, just after a few sounds/words. She definately makes more sounds and has better use of ehr voice when she sings, and she requires less spitting on me to make it work (notice I said “less”, not “no”).
In physical therapy, Jenny was able to hold her head up on her own for 15 seconds at a time while in a seated position on the therapy table. She looked so great. Of course, she is such a perfectionist and feels she is not doing well. I asked if I was in her place and did what she did today if it would be a big deal and she indicated that it would be. So, either she expects too much of herself or too little from me.
Missy was helping out with me today and we decided to experiment with what would make Jenny most comfortable. There is a second bed in her room and Missy would position me and put pillows under me like we do for Jenny. All the while, Jenny is watching and having a huge laugh. From my brief experience, I had a short look into Jenny’s life. There are no comfortable positions and the pushing and rolling is uncomfortable. My nose itched and Jenny liked me knowing that little detail and indicated that this is one of her personal torments, on top of everything else. The first thing I did when I got up was to itch her nose.