Recovery

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.

May 4, 2004

Jenny continues to struggle with pain in her body due to involuntary muscle movements. We all treasure the moments when she appears to be comfortable and happy. Jenny has work well with making sounds recently. She often mouths words she wants to say, and I have noticed (after her mom pointed it out) that Jenny mouths words to songs that she listens to. For some reason, she does best at producing sound following a stimulation like laughing. Unfortunately, the thing that made her laugh the most was when she spit up at me on accident (so she claims).

Jenny is able to sit longer (2-3 hours) in an upright position and her tone in her neck and upper body get better every day. Some parts of her body are becoming more stiff, but we are trying to work out those bugs. She also seems to be getting sore muscles that are being worked in therapy. We had accessability designers and therapists from the rehab come to the house to see what needs done to get Jenny set up to come home. The house looks pretty good, but needs to add a roll-in shower. However, Jenny could come home at pretty much any time, as far as the house goes.

May 1, 2004

Jenny has completed her first week of more intense rehab. I see her fighting the pain and discomfort during all of her treatments. She spelled out that she is tired of tests. I do not blame her. I hate seeing her tremble each time they say she needs a new MRI or x-ray.

During therapy, she grits and bears the pain. On a scale of 1-10 (10 being the highest pain), Jenny reports feeling a “9”, but will still allow the therapy to continue. I think I need to sew on cape on her clothes since she is my new super hero. Her pelvis or tail bone has been hurting her, so the harder therapy tables are even more uncomfortable. We had a better afternoon as she ate foods for pleasure and she laughed at the jokes that her mom and my sister were throwing out. They ended up with a chick flick before bed, so Jenny was in heaven for a few hours today.

April 29, 2004

Jenny began showing voluntary neck movement to her right today, which has relieved the pressure on her right ear some. Therapies have focused on strengthening the neck. In just under 2 days, she has also gained more tone in her neck and she is able to sit upright in a bed with litle or no support, when she needed constant support as recent as last week. I took her outside at lunch time and Jenny just relaxed peacefully in the sun and breeze. Since Jenny is aware of her condition at all times, she sees less progress than someone like myself or less frequent visitors. There are wonderful things returning each and every day which add up to bigger improvements as time goes by.

April 28, 2004

Jenny seems to be more at ease and getting her needs taken care of at her new hospital. Rehab has been tiring for her, but I prefer the more aggressive approach. Her head does not pull as much to the left today. I had spent the past three nights with her, so I have had just as little sleep as she gets. Yesterday, while holding her head (near the temple/top of her left side) to keep her sore ear off the pillow, I fell asleep and woke to find myself smooshing her face. I jumped and Jenny had the biggest laugh. I’m sure it was uncomfortable or at least annoying, but after a while (how long I do not know) she appeared to find the humor in it.

Jenny is here next to me and she wanted me to send her love to you all. Jenny has been in real clothes the past two days and looks so very good. She gets upset when they put her back into gowns. She wants to take a bath/shower so very bad, but they want her to get better neck and back control. I think she will work that issue until she gets her way.