Most of what Jenny has been working on the last few days has been breathing around her trache opening that we plug for several hours at a time. It is more difficult than what it would be without a thrache since the tube is still blocking some of the air flow. Jenny is able to sit up in her chair longer and longer each day. She seems to be free of the severe pain and discomfort. All she has now is the constant moderate discomfort- which is still a huge improvement.

Sleep appears to be good as well. Our plan is to get Jenny out every other day for drives or trips to the park. She refuses to go to stores and the such still.

Jenny has been reluctant to watch videos/dvd’s, or even tv, since one little reference to hospitals or illness causes emotional distress. As it turns out, most of her favorite shows were hospital based (like ER). The recent illnesses of friends and family are also difficult for her. It just reminds her too much of her experience and she feels bad since she knows what suffering others are experiencing.

As for other improvements, Jenny is surprising herself. Therapists and ourselves always ask Jenny to do things she has not been able to do. Every now and then Jenny does something new and it can be seen in her eyes that she was unaware that she could do it. Then, she will pracise until she is sore.

Jenny had her first Dr appt away from home today. The idea was to go to the ENT who saw her at the hospital and get the trache removed. For a while, Jenny has been doing everything that seems to be recomended prior to decannualtion (trache removal). As for our experinece, the Dr said that she was not going to remove the trache, despite the fact that Jenny is doing what she needs to do, and the Dr did not even look at Jenny before she said this. In her mind, a person with a stroke like Jenny’s has a time limit to fullfill. Trache removal is a huge step for Jenny. It is a major moral boost. It is something that assures she is getting better. It is one less open wound or source of infection. The trache is a major source that requires frequent care. It gets bumped frequently, which is painful, and its placement hinds head movement to her right side without causing discomfort. Any pain or discomfort is what throws Jenny into a cycle of painful spasms.

I want to feel that this Dr has some credibility and that in some way Jenny is being spared from possible harm, but the whole experience with setting dates of 6-12 months and stating Jenny is not ready prior to examination tells me she is not the type of person Jenny needs. Jenny more than agrees. If anything, Jenny is so set on working harder than ever before to prove everyone wrong who said she could not do- well, anthing. She is going to everything she use to do and there is no stopping her now. I’m not sure if I liked the old Jenny who fought rehab therapy and wanted to lay in bed, or the new one who demands constant therapy. I think the new one is pretty good.

The trip to Jenny’s appt did demonstrate her ability to go places. Jenny should be returning to church soon, which has been something she really wanted. She is reluctant to go into public, such as places like the malls and stores.

The whole med concern with Jenny’s involantary muscle movements that cause pain seem to be coming under control. Her doctor changed the meds to address neurological pain again. Jenny initially stated pain was not an issue, but I don’t think she realized the neurological pain was causing most of her discomfort.

We were able to get a mini-van for Jenny today! IT has an in-floor ramp that slides out, and it is the same basic model of van we already have. We took Jenny for a ride arond the block (and through the McDonalds drive thru) to see if she could do well in motion. She did great. Tomorrow is her first appointment away from home, so I think all will go well.

Jenny is slowly having fewer spasms in her muscles that make her tense up in painful positions. It seems to be part of a vicious cycle of tensing muscles because she is in pain and being in pain because of the muslces that are tensed up. Jenny did ask for real food again. She lacks confidence in her eating, but it is so good. Jenny rarely tries to eat, but she does tons better each time she tries. Today was tapioca pudding and angel hair pasta in alfredo sauce. Since her perspective has changed a bit, she is kind of a “eat dessert first” kind of girl.

Last night was a quite different experinece for two things. First of all, Jenny seemed to sleep a little at last. Second, we had a tornado and severe thunderstorm warning so I had to carry Jenny down to the basement. I think Jenny liked it since she had not seen the basement since coming home.

Jenny has been making small movements still. I know it is something significant because Jenny is now agreeing that she is making good progress. Her meds are still being worked out to regulate spasms and contractures that cause pain and twisting of her body. Her head is turning to the left side again, which makes head control more difficult. I am most encouraged by her respitory health. We have been plugging her trache to allow her to breathe completely through her mouth and nose. She does well considering that her airway is obstructed with a tube. It is pretty much like breathing through a straw. This just means she is getting closer to having the trache removed.