Jenny seems to be doing better at home, and appears more happy to be with the kids. Of course, being at home with the things she loves reminds her of what she can not do and it is difficult emotionally. I think she tries to get out of doing some therapies, but we encourgae until she gives in. She has a lot of emotional periods, but they seem to be brief and less traumatic. She has had fewer periods of spasms and her neck appears to have had favorable results from Botox shots since it does not pull to ther left much (however, she will not admit that the shots were worth it) and her ankles appear more loose. The kids are warming up well to Mom being home. They are coming in more to snuggle an show Mom things. Zach is always looking for someone to watch him champion his gameboy games and now he has a captive audience. Jessie saw Mom’s feeding tube and she wants one too. Jessie thinks that her mom is cool because food gets in her tummy fast without having to go through her mouth.

I dare not try to give an estimated discharge date, but I think it will be soon. Jenny’s health has improved and she is getting stronger. We see definate movements in both hands, but mostly in her right hand where she can move her thumb and now her pointer finger at any time. She recieved Botox shots in her neck and ankles to relieve the muscle tension that causes those parts of her body to turn abnormally because of constant spasms due to any sort of stressor. She is not pleased with the doctors who did not tell her how long the needle would be. As I watched, I even expected the needle to come out the other side. She was brave though. I can tell that Jenny needs to come home and be with the family. She has been gone so long and I notice that she is resisting therapy at times. Perhaps things will improve once therapy resumes at home. She still has her trache and other tubes, but hopes to get them out soon- most likely not before going home. Her respiratory health looks as good as ever though, so it should not be too long.

Jenny had a difficult morning yesterday in which she was flexing and twisting her whole body in painful ways for much of the morning. I am not sure what triggers these spasms, but it interferes with her ability to do anything on her own.
There is talk about removing her cathater and trach in the next couple weeks. Jenny is more than excited for those to go. We have been discussing more future plans, which seems to be going well, with some emotional times, but generally productive outcomes. We are looking into buying a van and doing some renovations, which will make life more enjoyable for Jenny. Jenny has become really comfortable with some of her nurses and she is working well with her therapists, despite reporting constant disomfort and severe pain in rehab exercises.

Jenny has tried to manipulate me into staying overnight any way that she can. I finally gave in again, but I now have to be gone during the day hours to catch up with errands I need to run and to spend time with the kids. I realize her concerns since some of the night nurses are not around her when they can see family interact with her and learn her communication, as well as her likes or dislikes. As much as some nurses try, I doubt they really know what Jenny needs. Others do really well with her. As for today, she has a sub nurse and tech who do not know her. That is no big deal since the family does most all of the care from dressing, feeding, moving, and cleaning during the day hours. Missy and I are pretty good at manual transfers, so that is going pretty good for us right now.