Jenny will most likey be in the hospital for a few more days. Jenny agrees with the delay and has some goals in mind to achieve prior to coming home. She is doing better today and began the day more relaxed until a horrible experience with a respiratory doctor whose lack of bedside manner and negative comments put Jenny into extreme emotional distress that she had painful body spasms that lasted a few hours and had to miss rehab in the afternoon. My stomach was in knots as I saw Jenny sweat and shake as she never has before. This guy’s behavior was more than accidental words or bringing up sensitive topics. He will no longer have contact with Jenny.

As for some good news, Jenny was moving her right arm in a way I never have seen before during some spasms. I could not get her to repeat the full arm movement, but she had definate control of her right thumb to the point of raising and lowering it on my direction (I have video as proof). All I know is that this is the same thumb that I use to control the remote, so her life is going to be pretty good. Seriously though, if this become stronger, it has solved our speaking board problem since the blinking sensors do not seem to work. A finger switch would be much more effective.

It looks like Jenny may be coming home as soon as next week! It is great, yet scary. We obviously do not have the home set up like we want to with renovations and redecorating. They can get the basics in for us to use for a while, but I’m not sure what things will be like at home. Jenny wants to be home, and I bet once she gets a real nights sleep, her strength will improve. I doubt she sleeps more than a couple hours of sleep each night. Jenny seems to be getting more control of her upper body enough to support her weight when slightly supported from behind. Her head still turns to the left, especially when she coughs, which triggers a whole chain reaction of painful spasms in her body. She lets us know that her trach bothers her when her head is turned to the right. A respiratory doc has been asked to look her over to see if the trach can come out, but he has not been up to see her.

Today, Jenny came up the full way on a tilt table that helps strech out her tendons to her foot that are shrinking due to lack of use. She grits through the pain so very well, but sometimes her face tightens up so bad that we fail to know what her blinks are saying. It also interferes with a speaking board that uses a muscle sensor that picks up deliberate blinks. She is getting better, but a laugh or cry will throw it all off.

Jenny has had 3 very emotional days this week that have made it difficult to relax her muscles. Whe she gets emotional, feels pain, is anxious, or feels discomfort- her body will become painfully tense and her joints become unbendable. Her therapies have been hindered and she had to cancell speech therapy due to being overly emotional (I later completed the eating exercises with her that she missed). It has taken constant repositioning and hours of hugging (which I do not mind at all) to get her to calm down. She becomes relaxed if I spoon with her in bed while she listens to love songs. Not a bad therapy if I say so myself.

Her eating is so much better. I gauge her progress by her ability to eat Jello. Two weeks ago she could not keep it in her mouth. Last week, she had some success keeping a few bites in. Yesterday, Jenny wolfed down a bowl in no time. The hospital puree foods are a bit under her level and I have asked permission to give Jenny soft, yet substantial foods. I have also began giving Jenny showers, which she loves. She is only supposed to get 3 a week, but she requests them daily now.