Nov 11, 2004

Jenny is feeling better from the tube removal. Her stomach was sore for a few days and she even took her first nap in years for a couple hours. She has been working with augmentative communication devices that speak what she types. She is good at it, but she is faster at finger spelling, so she is reluctant to use the speaking machines. Sign language does not require her to carry around a small computer, but finger spelling limits who she an speak to – mostly the kids. She did write several notes to the kids telling them how she felt about them. Plus, Zach has homework assignments where he needs to make words from a group of predetermined letters, so this offered a perfect opportunity for her to help Zach with homework for her first time. Being a past 2nd grade teacher herself, this meant a lot to Jenny to feel useful and to interact with Zach.

Of course, like most of Jenny’s things, everyone else used the communication devices more. We had to do several sentences such as, “Jessie eats worms”, or “Zach kisses girls” to make sure we really figured how to make it worked.

The kids have been really sweet with Jenny lately. They wanted so much to help their mom get better. Even our two-year-old Sophie makes sure to pray every time that, “mom gets better”. I gave therapy assignments to the kids to do specific activities with mom to help with motor skills. They involve puzzles, games, and therapy putty- so the kids are even more excited.

Last night, we had an aid to help out, so Zach became the first child to sleep with mom. Jenny needed this badly. They fell asleep holding hands and giving each other their special “I love you” hand squeezes that they have always had as their special secret way to tell each other that they loved each other. Zach is so sweet to his mom and loves her so much. The other day, Zach pulled out a bunch of his mom’s old sign language books and was diligently studying them. Jenny broke down into tears because she realized how much he wanted to communicated with her.

Nov 6, 2004

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”.

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.