Jenny is in a bit of pain with the ‘whole jerking out of the tube’ proceedure yesterday. Since they did not sedate her because they did not know she was conscious when it went in, I guess not being sedated to have it come out was keeping in form. At least they gave her a choice this time. She had a temperature for a short while today, but she appears to be getting better. If anything, getting rid of her feeding tube was to get rid of a reminder that she was not well. She knows she is doing better and I think it will show in her recovery. Jenny has been trying so hard to speak lately. Unitl now, any attempt to speak brought total silence until she was brought to tears by frustration. Tonight, she mouthed “I love you” and there was air and sound behind it. Making sounds is not new, but making voluntary sounds is. It was a beautiful and needed thing to have happen- for us both. Jenny does not use her eyes to speek anymore- except to tell me she loves me. I don’t miss blink spelling, but I still like to see her code for “I love you”.
News
Nov 5, 2004
Jenny is now finally tube free! Initially, they were going to sedate Jenny and put a scope down her throat to see what type of feeding tube was placed there. Prior to our first attempt on Monday, we had prayed for a successful removal without complications and felt good about it. Since they could not insert an IV, her initial tube removal date was postponed. It was confusing to have felt good about there not being any complications, but then have complications that prevented the removal. However, it appears that things worked out better off. Since they did not want to stick her 100 times looking for an IV, they contacted the hospital who inserted the tube and asked what type it was, so all they had to do at that point was skillfully pull it out in a proceedure that took a couple minutes. It makes a person wonder why they did not make the call to begin with if it could have been this nonevasive to begin with. I now realize that our prayer to avoid complications was most likely answered in the form of eliminating unnecessary proceedures that would have been performed the first time we went in.
Jenny is doing better each day still- just tiny bits at a time though. She is back to her old love of journaling again. She just does it on the computer now. Her entries are short, blunt, and filled with strong emotions. It appears to be really therapeutic for her. Jenny was able to vote this week and do a bunch more things that she has not done in a while. Outpatient therapy is wonderful for her. Her speach therapist is too much like Jenny (even the same anti-bean eating beliefs). Jenny is rapidly making improvments with her tongue, mouth, and voice through newer and inventive therapies. I really can see her speeking some day, even though she has not made any recognizable words or sounds yet.
Jenny is in her new room with her roll-in shower. It is wonderful and there is a bigger bed so I can take over more of the caregiving at night. I was initially worried that taking care of her from 7 am to 11 pm, plus get up every couple hours at night to reposition her would be too much, but as I have taken a few more nights from the night nursing aide, it does not seem to be all that taxing. I still have a nurse who relieves me 1-2 days per week so I can do a few errands or work things. I will most likely still have a nurse come in a couple night just to make sure I sleep enough. My biggest worry is what would happen if I become ill for even a short period. Jenny is still reluctant to have others do much for her besides myself (and the nurse on occassion).
Nov 1 2004
Jenny and I went to the hospital early this morning to have her last tube (feeding tube) removed. Unfortunately, they could not get an IV in her, so they postponed it for a later date. Jenny was really dissapointed and I hated to see her feel let down. It will come out soon, but this is another bump in her road to recovery. To do something a little more upbeat, Jenny and I went out for breakfast and Jenny shopped at a new scrapbook store. She has been to craft stores since coming home form the hospital, but she actually bought a couple small things this time. It seemed to do the trick to take away some of the hurt. I have a feeling that she will be wanting to scrapbook now that she can move her arm better. At least she can edit digital photos on the computer.
I, again, want to thank Jenny’s brother, Don, for this great web site. Recently he added some photos of Jenny and the family for those who are interested. They show early progress, but do not really capture how good Jenny has been recently. Hopefully I will be able to add more soon. You can find the link on the begining web page.
Pictures!
I have finally added some pictures of Jenny to the web site. You can see them here.
The pictures were taken between April, 2004 and September 2004. Thanks go to Mark for providing these pictures and to Jenny for letting us put them up on the web site.
Oct 30, 2004
Great things have happened since the last time I wrote. We finally broke a huge barrier when it comes to Jenny using the computer. Her vision has been good enough to do most things, except read. She has been working a mouse better each and every day, but not able to read print. We finally hooked up a computer to a large screen tv to see how she could do. Right away, she checked her e-mail and cried. She wrote a message to me, and cried. She wrote a message to her parents, and cried. They were all really good cries. Her typing skills are limited, but she can hunt and peck a couple sentences before exhausting herself. The whole process is still not perfect, but it works for us.
For those who write to Jenny’s own e-mail address, there are a few things that will help her see better. Type in a bold, all caps, larger font (at least 18), and make sure to double space lines. Double spacing is the biggest thing she needs to see since it gets all jumbled up with her blurry vision. I wanted her to write on this web page, but she was worried that people would think that she was more capable than she actually is. So, just so everyone knows- Jenny still struggles with the most basic tasks and needs assitance with almost every thing a person does. With that said, I hope to convince her to write at some time.
Outpatient therapy is wonderful! She ended up with a different speech therapist who is perfect for Jenny. Jenny most likely went as far with homebased therapy as was possible, so this was a good move at a good time.
JENNY LYNN'S NEWS 